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Can we start a new asthma support thread now dreaded winter season is looming?

(988 Posts)
Knackeredmother Wed 21-Sep-11 09:26:41

Hi,
I can't seem to find the old support thread. I lurked on it during many long, lonely and frightening nights and admissions with ds over the past year and a half.
My ds is 21 months now, was hospitalized at 8 weeks severe bronchiolitis (really thought he would die) then every 3-4 weeks since whenever he gets a cold. No symptoms in between colds but a wet, crackly chest with some wheeze with every cold. Plus of course the dreaded tracheal tug and sternal recession that heralds an admission.
It is all so bloody draining and heartbreaking!
We are just starting with a new bout today after a whole 8 weeks of being well. I am debating whether to call in sick for my nightshift tonight or leave poor hubby with an inevitable hospital admission AND our 4 year old!
Anyway, would be good to hear from others going through similar so we can all support each other ( or direct me to the original support thread!)

dribbleface Wed 21-Sep-11 11:00:13

Hi,

Great idea. My DS is no way near as bad as yours. Was hospitalised at 5 mths with bronchiolitis, took till 9mths to get treatment for asthma and another year or so to get it truely under control. Just had the best 9mths of health in his life (now 3yrs old), but have that feeling of dread as the winter season approaches too. Still on preventers a everytime we try to cut down the ventolin creaps up.

If i was you i would call in sick, not because your DH can't cope but sometimes the extra pressure on yourself worrying all night is not worth it. Suppose it depends in how flexible your work is?

Sirzy Wed 21-Sep-11 12:25:08

Hello, Fab idea!!

I could have written your OP!! DS was also critically ill at 8 weeks old with bronchiolitis - was on CPAP and very close to being tranfered to a different hospital for ventilation - was so scary at the time and when I look at the pics now I can't believe how far he has come!

He is 22 months now and has had 6 admissions with his asthma, and constant day to day problems. Over the summer he has done really well though but I can already see the signs of a long winter ahead of us!

He has his flu jab next week so I am hoping that helps keep some bugs at bay.

Hope you manage to avoid being admitted tonight, can you go to the GP/a and e now to try to get pred/nebs before it gets to bad?

Knackeredmother Wed 21-Sep-11 13:42:50

Good to hear from others going through the same thing!
Sirzy, you have posted on my desperate threads in the past and have been of great support.
Well, we have been admitted. I've rang in to work who were not very supportive and said I'm only entitled to one days carers leave. Ive said I'm not happy to leave my son in hospital without me but apparently I need to have other arrangements in place!
Anyway, just waiting for a chest x ray and the consultant.
Am dying for a wee and we are stuck in the waiting room still waiting for a bed. Nowhere to put ds and no nurses around!
Times like this I wish husband wasn't self employed and didn't have to go it alone all the time.

Sirzy Wed 21-Sep-11 15:31:30

Oh no, hope it's only a short stay.

What do your work expect you to do? Silly people, hope you manage to sort something. X

Knackeredmother Wed 21-Sep-11 21:57:16

Well work can whistle.
We have just seen a respiratory consultant (for the first time! Always just see general paed) who thinks there is a deep seated infection that's probably been there since his first ever episode.
They are going to discuss his x rays at the x ray meeting and arrange a ct scan. Also got 3 weeks of antibiotics.
After 2 years we are finally getting somewhere. I feel so guilty that I didn't push hard enough for a respiratory opinion before. I asked many times but was told it wasn't neccesary. I should have pushed harder.
So much guilt being a mother.....

mspotatochip Wed 21-Sep-11 22:06:11

please dont feel guilty, you can only push, push and do your best for them. i really hope ds improves soon. i too dread winter and dd has never had to be admitted just lots of long worrying nights.

Knackeredmother Wed 21-Sep-11 22:10:16

Thanks, the nights are the worst aren't they?

dribbleface Thu 22-Sep-11 07:34:39

knackeredmum - don't feel guilty you can only push so far and then be guided by the medical staff. hope things are move settled today. also on the work front you are entitled to reasonable time off, reasonable is judged as what's needed to make alternate care IF possible, so if child had chicken pox it would be reasonable to try and make alternate care after initial few days, it would not be considered reasonable to expect you to leave a toddler who is clearly unwell. tell them to get stuffed!

Sirzy Thu 22-Sep-11 08:02:57

Glad you are finally getting somewhere, hope this all helps x

Sirzy Fri 23-Sep-11 15:33:41

How is he now?

Knackeredmother Fri 23-Sep-11 20:14:37

Thanks for asking, breathing improving but really severe diarrhoea and vomiting from the antibiotics. Spoke to the consultant who advised halving the dose.
However our general paed had previously advised a 3 month course of a different antibiotic ( on advice of a respiratory professor) when he next became unwell.
I really want the best treatment for him, now it's the weekend we can't speak to anyone.
It's frustrating different docs doing different things. Anyway, no doubt we'll be back in with dehydration at this rate!

sillyworriedmama Fri 23-Sep-11 22:04:07

hi all, I'm just going to pull up a chair and mark my place. knackeredmother I'm sorry to hear you're having a time of it, I hope the antibiotics help. Hi sirzy smile good to see you!

Briefly for those who don't know us... DS also had bronchiolitis, at 4mo. Repeated trips to A&E, one blue episode. I also fought for a respiritory referral, but was fobbed off for bloody ages. As a result, we hammered the ventolin for about 7mo but it made little to no difference. Eventually, three courses of prednesolone later things have improved slightly. DS is now on twice daily Clenil, and atrovent instead of ventolin. We saw the consultant for a review today.

Apparently he has a slightly rarer kind of respiratory problem (he's still not classed as officially asthmatic due to only being 14mo, even though all his treatment is for asthmahmm). Anyway, the latest is he's been vomiting cup-full's of mucous. The consultant thinks now that he doesn't wheeze due to bronchial restriction, instead he struggles and wheezes due to wet lungs. This is probably why they all thought it was CF for ages. (it's not).

We've been advised to cut out all dairy, even though he's not allergic, to try and 'dry him up'. Has anyone else had to do this? Did it help at all? I'm not sure where to start really - we have a review in March but that's ages away. If we're struggling re: weight gain we'll be sent to a dietician for extra help, but in the meantime... does baby formula count? That's probably a stupid question but I'm not sure what to replace his morning and evening bottle with. Apparently rice and soy milk are nutritionally deficient?

Sorry for thread splurge. If you got this far, thanks for reading!

alibobins Fri 23-Sep-11 22:23:28

This thread has popped up at right (wrong) time!! on high alert for hospital visit tonight Ds2 has developed a nasty cough and wheeze since this morning sad inhalers not helping much

Brief history Ds1 age 6 Brittle asthma ventolin seretide singular ceterizine and azithromycin (long term abs) various severe allergies

Ds2 poorly baby in nicu bronch at 3 weeks reflux ventolin atrovent and flixotide singular was on a 6 month course of clarithromycin finished in spring due to whooping cough/long term infection dairy free.

Sleep study being done on tues and wed ds1 and ds2 follow up appointment in 6 weeks

sillyworriedmama Fri 23-Sep-11 22:30:33

hi alibobins I hope you get through the night with as little upset as possible. Let us know how you get on - in the meantime, here you go brew I know it probably feels like a long night ahead.

Sirzy Fri 23-Sep-11 22:31:10

Interesting how severe bronchiolitis is very much a common factor here.

Ali hope you manage to avoid hopsital

Bohica Fri 23-Sep-11 22:44:21

Unhappily marks place and gets comfy for another rocky night.

DD3 has a horrid cough and cold and her pumps are not helping at all.

Can I ask a question to the long timers please.
If DD3 (3y) has been diagnosed with asthma and then gets a cold with a hacking, choking cough do I presume it's her asthma and not a cold?

I've treated her with calpol, and cooled boiled water for her throat and only now started on her pumps again (blue that is) we use the brown one daily.

Only recently (last winter) been diagnosed with asthma and DD also has a small and recovering hole in her heart.

Sending wishes of peacefull nights to all.

gingerroots Fri 23-Sep-11 22:46:24

hi
I wondered if anyone has any advice re what treatment would be good for baby too young for asthma diagnosis? background - DS admitted to hospital blue with severe bronchiolitis at 6 weeks (CPAP etc). 2 subsequent admissions following colds with chest recession. He is now 8.5 months and I feel that following a 3 day cold & shallow breathing another hospital admission may be on the cards. He has a spacer & the green/white inhaler. We are on tenderhooks everytime he picks up a cold
Thanks for any advice.

Sirzy Fri 23-Sep-11 22:50:44

Bohica - with ds when he gets a cold it always ends on his chest so at the first sign of a cold I up his blue inhaler. One day this will be enough to stay out of hopsital!

Ginger roots - sounds like the same situation I was in with ds last year. Are you being seen by a specialist? If not I would be pushing for that. Ds was a similar age when the brown inhaler was introduced and when we got the dose right for that it made a massive difference, especially to his day to day life. Ds was officially diagnosed when he was 12 months old which is young for a diagnosis but it was a massive relief to get it confirmed and means the gp finally takes us seriously!

gingerroots Fri 23-Sep-11 23:01:54

thanks sirzy he is not being seen by a specialist just a general paediatrician for the breathing. Interesting to hear that the brown inhaler makes a significant difference. He has other health issues though & he is seen at specialist hospitals for those conditions.

sillyworriedmama Sat 24-Sep-11 08:25:09

Hi bohica, if your DS has that very sticky, wet cough I'd go back and ask about possibly starting a brown inhaler. The blue one didn't do very much for DS at all because he got so sticky he was waking up at least 5 times a night choking and coughing to the point of vomiting. It took about 8days of Prednisolone to clear up the excess, now we maintain with the brown inhaler (Clenil). We found that the blue reliever didn't help because it's a dilator that opens the airways, but DS's airways were blocked with mucous - hence the wet, hacking nasty cough that sounds like he is choking in his sleep. Apparently only 10-15% of babies respond completely to the brown one (it works better for most in older children) but for us, it literally makes the difference between using a reliever 2-3x a week instead of up to 20.

We saw general peads btw from when he was 4mo, through croup and the blue episode etc, and only recently saw the respiritory consultant. It makes a world of difference - he can properly explain to us what is happening. It's still not nice to watch DS go through, but at least I have faith in the care plan!

dribbleface Sat 24-Sep-11 09:03:21

i would second the brown inhaler advice. DS started on his at 8months and the difference after 2 weeks was remarkable. went from using reliever's several times a day to once a week or so. even now the odd time we try to but back on it within a week we have a bubble chest. DS woke today with a cold, cough and wheezy, here we go. using his blue inhaler's 4 times a day in the hope of keeping it off his chest, sometimes works. DC2 due in 9 days so could do without it!

sillyworriedmama Sat 24-Sep-11 09:29:22

ps DS started his brown one at 10mo.

Knackeredmother Sat 24-Sep-11 18:00:55

Hi everyone who has joined the thread! Would be nice to meet under better circumstances.
I don't know if it helps anyone but my son is thought to have 'persistent endobronchial infection'.
It explains the wet chest with every cold. Wheeze is not a big part in my sons breathing problems and the brown inhaler didn't help us.
This persistent infection is only just becoming recognized in medicine, if you google it you may find it explains your child's symptoms.
I am a doctor and had not heard of it but now I've done some reading I finally have some hope.
Just need to get the right antibiotics and fight for respiratory follow up.....

SnapesOnAPlane Sat 24-Sep-11 18:14:59

Hi smile
I've never actually been on one of these threads before (or looked, really), but I'd quite like to join if you don't mind.
DD1 has had a bad cold this week and her chest has been making 'funny noises' grin- I'm only really worrying because it still happened even after she used her inhaler. It's a purple round one blush a technical term, I believe. At what point do you start worrying (more than usual) and take them to the doctor?

Sirzy Sat 24-Sep-11 19:09:27

Hi Snapes!

With DS I know if he starts wheezing it is bad as normally he doesn't wheeze he just gets breathless and grumpy. If that carries on after a big dose of ventolin I know he needs to head to A and E. Also if there is any signs of the chest recessing or rapid breathing that needs checking. How old is she? Pixie who used to post on these had a rule of thumb which was if they can't sing a nursery rhyme without getting breathless then they need checking - obviously only good if they are old enough to talk though!!

Knackered - pleased you are finally getting answers, hopefully this gets it all sorted for him and you wont have to many more hospital trips x

Knackeredmother Sat 24-Sep-11 19:27:02

Snapes, I generally know it's time to go when the recession starts ( pulling in between the lungs, the sternum/breast bone sinking, tracheal tug/ hollow under the chin with every breath, belly inflating with each breath) and when 10 puffs of ventolin don't last 4 hours.
Fingers crossed for a hospital free night for everyone.

Knackeredmother Sat 24-Sep-11 19:28:03

That should have read'pulling in between the ribs' not lungs. Oops!

alibobins Sat 24-Sep-11 19:34:16

Managed to stay at home till 3 this afternoon when ds2 was wheezing hot grumpy and restless sad after a nebuliser at out of hours we were sent home to see how he goes but I am not happy they didn't take a history or even listen to his chest as he was upset they could see he wasn't happy hence the nebuliser she disn't even check his sats. He is just starting to get out of breath again sad I will take him to main hospital if he gets worse as they know him.

Lady at out of hours said I could give him an extra dose steroid inhalor at lunch times never been told this before?

knackered ds1 has got an endobronchail infection that is why he's on azithromycin mon wed and fri his bloods always show a slight infection and xray's show a cloudy area.

Sirzy Sat 24-Sep-11 19:38:44

I have always found OOH worse than the GP with DS! We have now been told that any concerns we have to skip GP and OOH and go straight to A and E - was nice to be told that rather than feel like a time waster!

Hope he is better soon and you manage to stay out of hospital.

My sister used to all in more steroid inhaler at lunch when she was ill (15 years ago though!) not sure how effective it is as I thought it took time to work but I guess it does no harm to try!

sittinginthesun Sat 24-Sep-11 19:54:05

Hi everyone

My DS2, aged 4, has mild asthma, almost the same symptoms as me. Thankfully, he gas never been really poorly, but every cold goes straight to his chest and in the bad old days, pre diagnosis, he would cough himself sick nightly for months. He lost so much weight, looked exhausted ...

Just wanted to say to those posters who are asking about colds and inhalers - we saw a specialist nurse last year. She has now said to use the brown inhaler all year round, double the dose during the first two weeks September, and again last two weeks of December, as these are the trigger times for colds etc.

Fingers crossed, it is working. DS has just got over a cold last week, but only needed blue inhaler at bedtime.

sillyworriedmama Sat 24-Sep-11 20:45:41

has anyone else gone dairy free or very reduced dairy diets with their DC? I'd appreciate any tips/advice on what you replaced it with. DS is 14mo and I'm worried about him not eating enough calories/calcium etc. Apparently it will help with his mucous. Don't worry if not, I might start another thread for it if no-one has any particular advice...

dribbleface Sat 24-Sep-11 20:47:58

sillyworriedmama - think if you are gonna cut it out completely you should ask your GP for support. I looked after a little boy who had prescription formula and we used to make up milk puddings etc with this.

sillyworriedmama Sat 24-Sep-11 20:55:22

thanks dribbleface, the consultant said not completely - ie we can keep one fromage frais, or some cheese, but that we should phase out milk. It's a bit of a bugger because I don't know what else to give him. I have been offered dietician support at our next review but that's March!! Six months is a long time to just wing it. I may ask my GP at our next appt (thurs) if he can be a bit more specific.

sillyworriedmama Sat 24-Sep-11 20:55:51

(I mean one fromage frais a day lol - one forever would be a bit minimalist!)

dribbleface Sat 24-Sep-11 21:01:49

i agree 6 mths is a long time to wait for help! I would ask GP about formula etc.. we did cut down DS's yoghurts etc at one stage but it made little difference to him, and to be honest he was an avid milk refuser from about 9mths so wasn't an issue for us at that point.

Hoping someone else with more ideas might pop up soon.

Knackeredmother Sat 24-Sep-11 22:37:14

Alibobins has the azithromycin helped?
That was the original plan for ds but the oncall consultant has given 3 weeks of erythromycin instead. He's really struggling with diarrhoea from this so we've now been told to halve the dosr.
I'm not convinced and think he should be on the azithromycin for longer like your ds.

cantpackwontpack Sun 25-Sep-11 12:18:10

Hi all, just popping in to say hi. I was fairly active on the old thread (used to be Suiledonne) My dd1 is 5.4 now and is doing very well lately. We normally don't make it through September without a hospital admission but so far so good. She started on Seretide a few months ago after developing a night cough on top of her usual cold-triggered asthma and it has done wonders. She now can get a cold and get through it without intervention.

As a precaution I bought a oximeter a few weeks ago. I dread those nights of watching and waiting so I thought if I had the oximeter I could keep an eye on her oxygen levels and be able to see if the nebuliser was having an effect.
I'm hoping it turns out to be a complete waste of money and we never have to use it grin

The change of seasons is always hard on her though and her eczema has flared up badly in the last few weeks.

suejh Sun 25-Sep-11 15:42:28

Hi all. My dd 15 months had broncilitus and colapsed lung at 6 months old and ended up in hospital for 5 nights. Now every time she gets a cold she gets very bad breathing again, its such a worry. I saw people have writen about going on a dairy free diet to help there lo. My dd is on completely hyperallergic milk and hasn't had any form of dairy since she was 11 weeks old, she still has lots of problems still :-( sorry. I do think it is ment to help tho.

alibobins Sun 25-Sep-11 16:26:35

Knackered- It has helped loads he has been on it before when he was around 2 for a year then things improved but then around 4 months ago he was re started on it. The consultant has spoke about putting ds1 on a low dose of pred but as a last option.

Ds2 has had a very rocky night I am going to see gp first thing in the morning as I think he has a chest infection sad managing on 3/4 hourly inhalers at mo so I am happyish

Ds2 has been dairy free since birth so not sure how much it helps.

roliepolie Tue 27-Sep-11 14:44:20

Hi all just joined up when i saw this thread.DD 2yrs 4mths has had 3 bouts of pneumonia and a few lesser chest infections and been hospitalised twice.Took her to a respiratory consultant who looked at the xrays and said he thinks she is asthmatic.He cahanged her inhaler to flixotide and have to keep steroids in the house..my problem now is when is she bad enough to give them as she only finished a course two wks ago..just dreading the long winter months at this stage

cedmonds Tue 27-Sep-11 16:40:34

Hi
I was on the old thread. Ds has been doing really well over the summer until yesterday and i think he has got a chest infection again was on nebs last night and today. He has just flopped all day and hasn't eaten a thing. Back to the gp for us i think i just hope he can get though it with out going blue all the time like last year.
As for avoiding milk etc it has really helped ds. He was dairy free as a baby then went back to having it for a year and that has been the worst year for hospital admissions.

sillywmama Tue 27-Sep-11 21:03:36

hi cedmonds, I hope your DS is doing better now? welcome to the thread roliepolie smile in the nicest possible way, I wish there were less of us who had to be here!

I'm settling in for a night of sleeping with one ear and one eye open tonight. DS just got up with the tell tale wet, hacking cough - he's super bubbly and wet on his chest. It's been building up a bit with a few night wakings over the past 2-3 days, and tonight he's just had an hour of earsplitting screaming working himself up into a right paddywack and wheezing, until he vomited a huge amount of mucous yet again. Nothing much helps when he's like this. We've given the green inhaler, he's not got any significant pulling in at the ribs, so we've settled him back down to sleep by walking round for ages in the buggy, so he's upright when he falls back to sleep. It's fairly mild tonight, but I'm not looking forwards to nights when it's rainy and cold outside and we can't go out for the midnight stroll sad

I'm lucky that there is an asthma drop in clinic where I live for children on Thursdays. Depending on what happens between now and then I'm going to go for dietary advice and a winter care plan review.

Sirzy Tue 27-Sep-11 21:09:59

The drop in clinic sounds like a fantastic idea!! Wish we had something like that here.

DS is still plodding on nicely as long as I'm not mean mummy and make him walk for more than 10 mins at a time!

sillywmama Tue 27-Sep-11 21:25:51

I know, we are very, very lucky Sirzy. There are community asthma nurses who visit at home, and the last time DS's came to visit she told me about the clinic, which is every Thursday. There is even an out of hours emergency call number which we used in the early days of his diagnosis, before we really knew what was A&E-worthy and what was 'wait and see'. I wish we didn't need it though!

suiledonn1 Tue 27-Sep-11 22:14:50

Hi cedmonds, I recognise you from the old thread and Sirzy too, I think.

I've changed back to similar to my old username. Was cantpackwontpack earlier on this thread but Suiledonn suits me better smile

As regards the persistent infection when dd1 first started having chest infections she went from antibiotic to antibiotic without ever being fully well. It was only when it came to a crisis when she was 19 months and rushed to hospital by ambulance that they did an extra which showed a patch of infection. The consultant reckoned that this infection was not clearing with oral antibiotics so she was put on intravenous and x-rayed again to make sure it was cleared. That, and the brown inhaler, was the start of a big improvement for her.

I've come to the conclusion that dd is allergic to September. Everything seems to go wrong for her at this time of year.

I feel like I am the only one hoping for a hard winter like we had the last two years as her asthma and skin improve loads when it is freezing outside.

Sirzy Tue 27-Sep-11 22:19:02

I'm dreading winter! Last 2 winters slightest sign of snow seems to coincide with hospital visits! His first admission it was a struggle to actually get to the hospital!

suiledonn1 Tue 27-Sep-11 22:29:40

Sorry to hear that Sirzy. Wishing you a lovely mild winter in your neck of the woods and subzero all the way in mine grin

cedmonds Wed 28-Sep-11 08:29:24

Hi suiledonn i have always said that ds is allergic to September it is always when his asthma starts to flare up.It is then hard to get it back in control again for the rest of the winter.

HattiFattner Fri 30-Sep-11 07:35:37

Gaarrghh! Hello all, we're baaaaack! September/october rolls around and BAM! young master hatti the preteen grumpy one is wheezing away. A day off school today, I think as he has been like a set of old bellows overnight and recessions thismorning, although thankfully they have eased after his normal dose of flixootide/serevent plus a couple of ventolin.

I hate this time of year!

Action stations today on his bedroom - clean bed, new pillows, vax carpet, air room. sigh

sillywmama Fri 30-Sep-11 09:34:51

hi HattiFattner, I hope your DS feels better at home today.

HattiFattner Fri 30-Sep-11 10:01:02

thank you!

He's had 5 lots of ventolin since 5 am, so we are off to the GP at noon, watching him until then. Think it might be an infection brewing as he was really clammy and hot overnight.

HattiFattner Fri 30-Sep-11 12:43:52

steroids & penicillin sad Ahh you have to love Autumn!

sillywmama Fri 30-Sep-11 14:43:12

bless! Poor thing. I hope it's a short illness. I know it's not asthma related, but my wee DS has just had his MMR and the other two jabs (blush I don't actually know what the other two were!!) and is feeling rubbish today. Fever, no appetite, exhausted. Makes a change to have a sleepless night that ISN'T about asthma. As a result of the fever, the only thing he will accept for fluids today is formula... so much for dairy free!! Start again tomorrow I think...

roliepolie Sun 02-Oct-11 13:00:55

Hi girls thanks for the welcome to the thread..i think we all need a bit of support with the constant worry with our los.Was reading all the messages and was wondering have any of you had your los on the singulair sachets or tablets for the older ones.I had dd on them last yr ,now she still got a chest infection but in between seemed symptom free.She was taken off them as doc thought they were causing nightmares but i put her back on them last night as she has had a very bad few nights with her breathing.Anyone any experience with this medication i looked it up myself on the net and think its the worse thing i did.Consultant said you will find negative things about all meds if you google them.She seemed to have a better night last night so thinking of keeping her on them during winter mths.Sorry abt long post but its all just so confusing trying to get a happy medium with all the meds.

elmofan Sun 02-Oct-11 13:31:21

Hello . Is it ok if i join in ?

My dd is 5yrs old and has Asthma , eczema & hay fever (the whole package) but is having recurrent chest infections every 3 weeks and is put on Antibiotics and Steroid tablets along with her inhalers every month for the last two years . No improvement at all . Going back to our GP tomorrow as her chest is in bits again .

Sorry all of you are going through this too .sad

HattiFattner Sun 02-Oct-11 15:52:28

elmofan, as for a referral to a specialist...that is too much for a wee one!

Mine is still struggling - not needing ventolin now but is awful colour and breathless all the time. We are playing the "wait and see" game.

HattiFattner Sun 02-Oct-11 15:53:00

ask [bush]

HattiFattner Sun 02-Oct-11 15:53:33

gaarh! ASK blush

Double blush

elmofan Sun 02-Oct-11 16:18:08

Thanks hatti We had a referral to a consultant last year but he just told us the same as our GP "that dd should grow out of these chest infections" sad
But EVERY 3 weeks she's back on steroid tablets & antibiotics . I wonder could i buy an nebuliser to use at home , i will ask my doctor tomorrow .

Fingers crossed for your little one x

Sirzy Sun 02-Oct-11 20:54:07

We were told they only give home nebs to really severe asthma, as normally if they need nebs they need to be in hospital (or at least at gp)

Sounds to me like its the same infection just not clearing. I would be pushing for a longer course of antibiotics (perhaps even all winter) to make sure it clears fully.

elmofan Sun 02-Oct-11 21:06:34

Could it be the same infection lasting for just over two
years now though? shock
My Gp asked me did i have a nebuliser at home while i was
at his surgery three weeks ago, but didn't mention it again after
i said no.
Thanks i'll ask about a longer course of antib's.

HattiFattner Sun 02-Oct-11 21:09:39

do you think I should be worried?

DS is on amoxicillin and prenisolone, has been since friday lunchtime. But still feels very tight and wheezy. He's had a couple of puffs of ventolin tonight (on top of normal upped dose of flixotide and serevent). Peak flow is down but not drastically (from 400 to 340) ... WWYD - just keep on with the ventolin or down to after hours for a neb?

Bohica Sun 02-Oct-11 21:16:23

Is he settled and just sounding tight and wheezy? When did you last give the top up and do you think it helped?

<lots of questions emotioncon>

elmofan Sun 02-Oct-11 21:17:04

Go with your instincts Hatti sad if you are worried
go to doctor / hospital now.
How old is your ds?

HattiFattner Sun 02-Oct-11 21:23:16

hes coming up for 12. calling GP now as he had 3rd dose ventolin in last 30 mins and he is upstairs coughing and breathless

Sirzy Sun 02-Oct-11 21:25:49

I would give the full 10 puffs then see what happens but like others have said if in doubt get him checked out.

Hope he is ok x

elmofan Mon 03-Oct-11 07:05:15

How is your ds Hatti? hope he is doing ok now? X

HattiFattner Mon 03-Oct-11 07:25:51

morning - spent the evening in A&E - hes now on reducing regime of ventolin/atrovent. Snoring upstairs, and so tired he hasnt actually woken up to do his inhalers overnight. WIll be building a spreadsheet thismorning to work out when he needs which meds! Surely theres a market for an app for this (goes to work out spec for app).

Sirzy Mon 03-Oct-11 10:00:36

An app like that would be fantastic. I end up with a peice of paper with everything he is taking written down with the times they are due!

roliepolie Mon 03-Oct-11 11:04:12

hattifattner sorry to hear your ds not doing well..hopefully he will be a bit better today hate those visits to A&E as soon as my dd sees the doors she goes mad and she only 2..weather not as damp here today so maybe have a better day

roliepolie Mon 03-Oct-11 11:06:23

sorry hattifattner meant to ask how do you measure the peak flow

Sirzy Mon 03-Oct-11 11:44:17

Ds loves going to hopsital bless him! He thinks the nurses are great - until they give him Nebs then he hates them.

Peak flow is only done when they are old enough to understand and co-operate!

elmofan Mon 03-Oct-11 12:29:44

Hi everyone , We are just back from the doctors with DD . GP has changed her inhalers to salmeterol/fluticasone and salbutamol and ventolin . I mentioned about the antibiotics not working (thanks sirzy) so he has given her a two week course of Augmentin Duo antibiotics to see if that clears her infections up (both her lungs are crackling and her chest is very wheezy) . If not then he is talking about starting her on a tablet for her Asthma along with the inhalers .
Her colouring is awful today , very dark circles under her eyes .

How is your ds feeling now Hatti ? poor thing must be exhausted sad x

HattiFattner Mon 03-Oct-11 14:24:49

we're just back from A&E again sad DS was very tight and wheezy depite 6x ventolin at 8:00am, peak flow down to 320, so off we pottered....all morning in a fecking busy A&E* and saw paeds consultant....of course when triage nurse and junior dr listened to his chest at 10am, he was wheezy all over. Xray was clear. By time Paeds consult called, he was fine hmm - magic white coat anyone?

She's put it down to a viral infection. He has a snotty nose, and post nasal drip is triggering wheeze. Plus she says much of it is in his head (he had major attack and 2 days hospital in January) - as she was very kind and said that kids panic. Gave us some good advice on when to bring him in, and also said that Drs can panic too and start him on loads of different meds for belt and braces cover, where really he might not have needed much of it.

So at least we are home, and he is looking better and has been reassured by a nice dr.

* A&E: A family there - mum, 2x sisters (one in her PJs - she was about 18) toddler and baby. Mother is having a big shouty issue with the nurse because she wants to see a dr NOW as her baby might have meningitis.....hmm this would be the 9mo baby that is beaming at everyone, eating cheesy wotsits and chugging on her bottle quite happily then?

HattiFattner Mon 03-Oct-11 14:27:32

rolie, we have a peak flow monitor. he blows into it theres a little guage on the side and we know where it should be (c. 400 is normal for him) and if it drops below a certain point (now 300) he needs ventolin. You can ask your GP for one.

elmofan Mon 03-Oct-11 14:44:13

OMG Hatti your poor ds . poor you too , you are really having a though time of it .
glad you are back home and i really hope your ds starts to feel better soon .

HattiFattner Mon 03-Oct-11 15:05:26

elmofan, thank you. Your DD is now on the same combo as my son - he's been on them since he was 4 and it made such a difference from the beclotide (sp) which was ineffective. DS is generally really well controlled and we rarely need help but we are heading to puberty and it can all go a bit tits up at this point (esp when bolshy preteens dont want to do their meds!) - hopefully this will do the trick for your child.

elmofan Mon 03-Oct-11 17:59:51

I know what you mean about bolshy preteens , i have a 12yr old ds grin .
I swear he is going back to his favourite word as a toddler NO wink

I really hope dd improves on these inhalers , the doctor said if these don't work then she will need to be put on a tablet to help control her Asthma .

Hope you all get a better nights sleep tonight Hatti .

overthemill Mon 03-Oct-11 18:07:31

we've just finished 10 days on oral steroids and peak flow 1/3rd of what it could be. sooo fed up, it's wonderful weather and why oh why is she so ill so soon???

roliepolie Tue 04-Oct-11 09:42:04

hatti glad your ds is on the mend typical when they see the doc they magically seem better.Elmofan i think the tablet to help control her asthma is the singulair my dd is on the sachet formula when we started her on it we had four months of her being well have just put her back on them since thurs for the winter mths plus she has had the flu injection so hopefully she will be good for a while now.Overthemill doc told me 2 wks ago that the month of sept and last 2 wks in dec are the worse mths for colds and flu..dec 2009 dd had pneumonia and 29th dec 2010 had pneumonia again and now again this sept

cedmonds Tue 04-Oct-11 10:35:48

HI sorry everyone has been having a rough time. Ds went back to the dr as still very tight chested and got sent home yesterday after asthma attack. He is on pred and three hourly ventolin and has had his flixotide increased.He is having a neb in the morning and evening as well.hmm His peak flow is right down but he has gone to school and they are going to keep a close eye on him. I really don't want another winter like last one with him only having 60% attendance. His is missing all the basics sad It is so hard to know wen to send them in but he had all of last week of school.

Sirzy Tue 04-Oct-11 19:27:43

Hope all the poorly children feel better soon.

DS has his first cold of the winter so got everything crossed that it passes uneventfully this time!

Knackeredmother Tue 04-Oct-11 20:17:38

Sending get well soon vibes to all the dc struggling. It's a miserable time isn't it? We have been well here since 23rd September (good going for us!) but ds still on his antibiotics so fingers crossed for when they stop.

garliclover Wed 05-Oct-11 08:41:01

Hello, I'm new to this thread and new to asthma. My 15 mo has been in hospital twice with breathing probs. Has brown inhaler twice a day and has been having a lot of ventolin recently, plus a course of prednisolone. This is all related to multiple allergies which have been diagnosed over the past year. I've learnt so much from your posts and will be watching this thread with interest and a lot of sympathy for your DCs and you...

elmofan Fri 07-Oct-11 09:55:13

Good morning

How are all your dc's doing ?

Sirzy Fri 07-Oct-11 10:00:24

Ds is doing well. Just had his flu jab so hopefully that will help with a nice healthy winter!

elmofan Fri 07-Oct-11 10:14:30

Oh thats good smile I had my flu jab on monday and was sickly for a few days afterwards <yuk>
My doctor has decided to hold off giving it to DS & DD this year , which has me baffled seeing as they have had it for the last two years confused Doesn't make much sense seeing as dd is suffering so bad with her chest again .

roliepolie Fri 07-Oct-11 10:19:08

morning all looks like another trip to the docs for us today.dd constantly taking large sighs might sound strange but was wondering do any of your dc do this.She did this before and had a chest infection so dont want to take my chances over the weekend.All of these symptoms are new to me as she is not wheezing or breathless..sitting here wondering am i overreacting(last time was breathless with the sighing)Friend of mine who is asthmatic says its because she not getting enough oxygen to her lungs so thats why she doing this.Any advice or views welcome....also very very restless all night

elmofan Fri 07-Oct-11 10:24:34

Oh Rolie sad I tend to do the big Sighs when my chest feels tight . In my case it's just like your friend says it feels like i can't get enough oxygen . Hopefully thats not the case with your dd xx
Kids tend to pick up habits , it could be just that but if your worried get her checked out .

roliepolie Fri 07-Oct-11 11:03:40

thanks elmofan have an app for the afternoon she doing it a lot more now..giving her the ventolin but it not making a difference..my doc will be sick of looking at me was only there last wk and the wk before

elmofan Fri 07-Oct-11 12:24:09

Not at all your doctor will understand x
better to get her checked out now than to leave
her sickly all over the weekend.
Good luck at the doctors x

Hi everyone can I join?

Both my DS have asthma. DS1 is on brown inhaler but seem to be coughing and coughing again at night. I wonder if I should book another appointment with the Asthma nurse. should he be coughing all the time when he is on brown inhaler or is the dosing not appropriate for him

Sirzy Fri 07-Oct-11 12:42:13

Have you tried giving ventolin before bed for a few days?

Sirzi

Yes I have been doing that for three/four day. How long do you think I should carry on to see a difference?

cedmonds Fri 07-Oct-11 14:19:56

Hi
Ds has ended up in hospital againsad He is at home now and seems loads better.Lets hope this is not the first of many hospital stays this winter.
lifetooshort they shouldnt be coughing that much when on the inharlers i would do what sirzy says and try ventolin before bad. Airing the room for ten mins before bed can really help as well.

cedmonds Fri 07-Oct-11 14:21:14

Sorry crossed posts.
I think it should make a difference pretty quickly.How old is ds? Can you make an appoinment to see the asthma clinc?

Cedmonds sorry to hear about your DS. I hope he gets better and out of hospital soon!

Mine is 3 and he is coughing as much as he was before he got his inhalers last year, that's why I am wondering whether I should go back to the asthma nurse.

Will try airing his bedroom before bed too. Thanks for the tips.

cedmonds Fri 07-Oct-11 14:38:01

Hi
He is out of hospital now. I would go back to the gp as night time cough can be a sign of un controlled asthma.
YOu could also try damp dusting his room and washing sheets etc at 60 .
I have put ds soft toys in the frezzer over night to kill the dust mites etc.

elmofan Fri 07-Oct-11 15:16:15

Great advice there from Cedmonds lifeistooshort smile

I have to damp Dust DD's bedroom EVERY DAY because she is highly allergic to dust . I found Ant-allergy mattress and pillow covers helped too .

Cedmonds - Hope your little one is feeling stronger soon x

elmofan Fri 07-Oct-11 20:00:27

Rolie - How is your dd feeling now?

Thank you for the tips Cedmonds and Elmofan. I will try. Glad your DS is out of hospital Cedmonds!

Nuttychicken Fri 07-Oct-11 22:53:22

Hi,

Don't often post but would appreciate some advice. Son (3 years) is currently taking brown inhaler twice a day as preventative, blue reliever. Has had a cold. Today his cough has started up and I am just filled with dread. His blue inhaler relieves for an hour or so at most and then the cough comes back.

Annoyingly he is not diagnosed as asthmatic despite a trip to hospital in March which was very scary and involved chest xrays and nebulisers with antibiotics and steroids. We have been given the inhalers but no advice on what action to take when he gets these symptoms.

There is nothing more frightening than watching your child ill but being faced with apathy from health care providers who seem to think every parent is neurotic and overreacting.

At what point to I call the on-call GP? At what point do I need to take him to hospital? I have read up online and there is a lot of talk about an action plan but nothing has been set up with my son. Does anyone have any experience of this?

So far he is sleeping and hope that he will stay that way but will he wake if his breathing gets worse or do I need to check on him?

I would really appreciate some feedback from anyone with experiences like this.

Thanks,

Nutty

roliepolie Sat 08-Oct-11 10:29:52

hi all i see a lot of our dc are suffering at the same time,cedmonds glad to see your ds is out of hospital and doing better dd just had her ventolin dose increased and seems to have stopped the heavy sighing.Nutty we were the same with dd with hosp addmissions,xrays nebulisers,antibiotics and steroids but was told very hard to diagnose asthma in young children,after a visit to a private consultant he is fairly sure its asthma and changed her brown inhaler to an orange one which is stronger called flixotide

Nuttychicken Sat 08-Oct-11 20:31:48

Thanks Rolie.

I wish we had the resources to go private but its totally out of the question at the moment. DS is better today but still getting breathless very quickly and seems worse again this evening. Perhaps its something in the house making it worse as we've been out most of the day and he's been ok...

Did you find the flixotide worked better?

cedmonds sorry about DS. DD1 (as she is now!) saw the respiratory consultant a few weeks ago and he didn't think she was ready to reduce the Seretide sad. She's still on the singulair and a ton of Ventolin, but as the consultant reminded me, she hasn't needed to be on oxygen for over 6 months and hasn't seen the inside of an ambulance for about 9 months....

sillywmama Sat 08-Oct-11 21:25:22

so... sorry to hear everyone's been having a tough time. I'm just checking in. DS is very bubbly in his chest and that wet cough is building again. We've doubled his clenil for a few days and are giving the atrovent to try and steer off a chest infection. The wetness on his chest is so hard to manage when he gets a cough. It just builds in the night. Still, we panic less now and haven't done an A&E run since before summer. Fingers crossed it stays that way. We are getting into the dairy free now and I have high hopes for it, will report back when it's been a few more weeks to see if it has an impact! I hope all your DC's are feeling good tonight!

cedmonds Sat 08-Oct-11 21:46:00

Hi Nutty Ds is on flixotide and it has really helped but i thought it was out of licencing for under 4yrs. Ds is doing really well now almost back to normal.
Hi i love congratulations on dd2 that's good news that dd1 has Ben stable and you have had no mad rushes to hospital.

Nuttychicken Sun 09-Oct-11 09:26:40

Thanks for the feedback. Have done some Googling and it does seem flixotide is for 4 yrs plus. Shame as I thought there might be some hope there.

Had another bad night last night. DS was up from 4.30am and actually asked for his inhaler which is a first. He is really rattly in his chest again. It looked like another day of calling on-call GP today and getting nowhere fast.

This morning however he is like a different child and I am now left wondering how he is fulll of beans and I am ready to collapse! My state is not helped by DD who decided to cut her 4th tooth last night too (as well as mastering crawling) so she was up every two hours. Why do all these things come at once!?

:-(

nutty DD1's respiratory consultant said that at Children's Hospital they are more willing to prescribe some medications that aren't strictly approved for pediatric use as there are lots of factors to be taken into account. DD1 is on Seretide 125 but she was taking quite a bit of pred in the meantime, so her asthma wasn't controlled. Plus she is being seen by the consultant every 6 weeks and her height is being monitored closely as one of the side effects of steroids is stunted growth.

cedmonds Sun 09-Oct-11 10:49:25

Sorry nutty i didn't make myself clear ds was on flixotide when he was 3, because as i love said it was the only way to get his asthma sort of under control he is also at the hospital very 8 weeks . I know some Dr will not go out of lienceing though.
Its always the way when they are full of beans after a rough night and you feel like curling up and going to bed for a few hours.
Ds was coughing again last night and actually got up to have his inhaler himself bless him.

Hi can I join? DS is just turned 7 and has asthma. Looking back he had a terrible chest infection as a baby and was hospitalised. Then not much in terms of coughs until January this year when he was hospitalised again as unable to breathe. GP says the infections have triggered asthma. A few weeks later he was struggling again, back to GP who gave him a programme of steroids which really helped. He now has the blue inhaler for if he is wheezy and a brown inhaler which we have to give him if he is starting a cold.

Been very stressful, and really dreading another winter so it gives me comfort to know we are not alone.

alibobins Sun 09-Oct-11 16:06:40

We've had a stable few days until last night when ds2 started with a cough and wheeze sad he is well in himself so fingers crossed it stays like that as I have a very important exam tomorrow.
Ds2 has been on flixotide since he was 6 months old so it my be worth asking about. We were lucky that we saw a fab consultant early on who we already knew through ds1.
Ds1 is having surgery on wednesdy for a unrelated problem and then opefully can book the sleep study before we go back to the consultant 2nd November.

roliepolie Mon 10-Oct-11 11:15:49

Hi all weather here terrible so expecting plenty of ups and downs..nutty dd is only two and has been put on the flixotide i couldnt afford private consultant all the time i just went for one visit for a second opinion and an assesment..alibobins hate to hear the cough i instantly panic and fear the worse but not so much now as in the beginning..sillywmama hope your dc is feeling better now they are an awful worry..hope all have a good day

alibobins Mon 10-Oct-11 12:44:25

I've shipped him off to granparents loaded up on meds sad off to do my exam if I can remember anything!!!

cedmonds Mon 10-Oct-11 12:53:00

Hope your exam goes ok to allibobins as you stay away from drs with ds.
Ds is of school again today he has a horrid cough and is very tight chested. We have got a dr appointment tonight. I think the weather going from hot to cold and back to hot again really isnot helping him.sad

Sirzy Mon 10-Oct-11 18:50:59

Ali hope the exam goes well and ds is ok with his op!

roliepolie Mon 10-Oct-11 19:09:59

best of luck alibobins hope ye do great,cedmonds think your right abt the weather hope your ds feeling better how did you get on at docs?

cedmonds Mon 10-Oct-11 19:24:23

Hi
Ds chest is still very tight.The gp wanted him to go to the hospital we have manged to stay at home with strict instructions if he gets any worse he needs to go straight theresad
He also said that lots of asthmatics are having problems at the moment because of the weather.

alibobins Mon 10-Oct-11 20:49:53

Ds2 managed okayish at grandparents although very wheezy tonight but still eating and smiling which is all good.
Exam went okayish too so glad it's over feel like I can have my life back.

Cedmonds fingers crossed u stay away from hospital did your gp give you any pred or extra meds?

cedmonds Mon 10-Oct-11 20:53:40

hi alli glad exam was ok.He is on pred anyway so just had extra and the inhalers have been increased back to what they were.

alibobins Mon 10-Oct-11 20:56:33

so rubbish hate the winter months the dark nights waiting for the mad dash to a&e yuck yuck

roliepolie Wed 12-Oct-11 14:49:38

just back from a&e AGAIN poor dd had very rapid breathing all night and then at 6am temp spiking at 39.3 rang doc on call and said to take to a&e turns out she has an upper respiratory tract viral infection ears throat nose and chest which doc says makes asthma worse.....and thats after having the flu injection

cedmonds Wed 12-Oct-11 17:12:13

Oh no rolie Ds always used to get mild flu like symptoms after getting his flu jab. This year he was just a bit under the weather.
Ds went to school today and was then sent home at lunch at least he managed a morning. He is still very tight in his chest so we are going back to the gp tomorrow morning.

alibobins Wed 12-Oct-11 20:38:49

Ds1 op went well although we did have to spend all day on the ward as he took a bit of coming round and was in some pain.

TheSecondComing Wed 12-Oct-11 20:54:36

Message withdrawn at poster's request.

Sirzy Wed 12-Oct-11 21:20:21

You have to do what feels right to you. Whenever DS gets a cold he ends up in hospital (thankfully he doesn't get colds that often but since he was 8 weeks old we have had 7 admissions and he isn't yet 2) needing oxygen/nebulisers/steroids etc.

Based on that, and talking to his consultant, I decided the flu jab was the right thing for him. He had it last year and this with no problems. That said he has never reacted badly to anything else so it wasn't as hard a decision!!

Sirzy Wed 12-Oct-11 21:21:36

Ali - glad the op went well. DS was awful when he came round from his anaesthetic but was fine the next day!!

Rollie - hope DD is better soon.

DS just had his flu jab with no side effects. The GP said this years jab was better than other years so shouldn't cause side effects. Worth checking with your GP?

roliepolie Mon 17-Oct-11 13:17:17

Hi all things seem very quiet on the thread hope that means all the little ones are doing well...

TheSecondComing Mon 17-Oct-11 13:32:53

Message withdrawn at poster's request.

Knackeredmother Mon 17-Oct-11 15:13:06

I hope everyone is well.....
We've just had another blue light admission. The last 3 weeks of antibiotics have made no difference- another cold and the heartsink respiratory distress was back.
We've another 6 weeks of antibiotics and STILL not been taken on by a respiratory consultant. I'm seriously losing the will to live......

carocaro Tue 18-Oct-11 12:50:18

Come on here for a whine, DS2 aged 4, started school 4 weeks ago and has yet to do a full week, has been on Motulukast for over a year which has helped with the past 3-4 colds, but this last chest infection has buggered us all. Four lots of prednislosone steroids, two trips to a&e out of hours, two trips to the docs, one this morning after him coughing all night long ever 60-140 seconds - I know I counted - with a 60 min stretch max of sleep three times. Chest infection gone, but it's now a virus appatently, another one, I wish virus would all FUCK OFF.

Is the difference between a virus and a bacterial infection a high temp? Or something else? How come both sound wet chesty coughy yet doc said she could hear no wheezing or wetness? So tired and confused. Just spent £60 on vitamins, DHA oil supplements and stomach enzyme for kids (all Animal Parade) after extensively Googling help and cures and things that might work!!!

He is propped up in bed - cough medicine - blue and brown inhaler - steroids - humidifier - Vicks rubbed on the soles of his feet with socks (google it!) BUT still coughing. I seriously am thinking of emigrating somewhere hot, I DETEST the winter and all this shit. Poor DS is so tired and fed up, still eating and drinking but wants to go to school but can't go totally knackered and cough all over everyone! PLus some stupid mother at school said to me 'oooh he's so sickly and missing so much already" I just ignored her! This is the woman than goes into school at lunchtime to give her kids Calpol rather than keep them off - which I think is A - insane and B - takes up the teachers and TA time when they should be getting on with their job. Anyway I digress....

Knackeredmother - write to your GP and the hospital, its outragous you are not under specialist care. DS had two admissions and is under the care of a peadiatric respitory specialist.

DS1 and 2 (aged 9) had the flu jabs last year and had not side effects at all. I would give it because if a cold can cause this much trouble the flu would be 100 times worse.

Power to you Mums out there with this to cope with!

Knackeredmother Tue 18-Oct-11 14:20:53

Carocaro your post exudes humour despite the nightmare! I can totally emphathise with being fed up. I have a post going in AIBU that might provide some support for us ladies here
www.mumsnet.com/Talk/am_i_being_unreasonable/1322320-To-want-our-family-and-friends-to-help-us
We are under a general paediatrician but despite so many admissions with RESPIRATORY problems, no one will refer us! i've tried gp, community paed, general paed and everyone says no!!!!!!
We did by sheer luck see a resp doc on our second last admission who has devised a (sort of) plan but still has not taken him on - is just liasing with the general paed. I am banging my head against a brick wall!

FloweryBoots Tue 18-Oct-11 22:13:17

Now, I feel a bit pathetic asking here when you guys are (from my brief glance through the thread) clearly having to cope with BAD stuff, and far worse than we have, but you probably can offer the best advice! My DS, 14 months, is wheezing and I could do with a bit of advice about how much salbutamol inhaler I can give, and if I should go to the GP with him, or not bother.
He started with a cold two weeks ago, he was almost immediately chesty but to begin with it seemed to be just phleghmy rustling, not wheezing. Last Thursday (a week after start of cold) I thought he was wheezing just a little so we started on 2 puffs three times a day. On Monday two puffs wasn't cutting it so we upped to 3 puffs 4 times a day. Today I picked him up from the child minder at 5pm, he'd had 3 puffs at 3pm and was already quite wheezy again. I gave him 3 puffs again when we got home and by bed time (7pm) he was wheezy again, and had another 3 puffs. This is starting to feel like quite a lot of inhaler to me and really can't remember what the doctor said we should give when we first got the inhaler as that was at least 6 months ago and he used it then for a few days, again a couple of weeks later and hasn’t needed it since. Should I try more puffs less frequently, or is fewer puffs more frequently the way to go? And is it worth a trip to the docs if he's the same tomorrow? He’s happy in himself and none of the nasty signs of respiratory distress .
One minute I think I’m over reacting and worrying unnecessarily and that I’m just waiting for DS to have full blown nasty bad asthma like me and my sister had when little, and my sister’s two boys have now (they are well known in the local ICU!), and the next I think I’m too blasé because this sort of level of wheezing is just so standard in my family.

Sirzy Wed 19-Oct-11 07:46:24

I would take a trip to the dr even if just for your peace of mind.

With ds we have been given the rule of thumb to go to a and e if 5 puffs don't help for at least 2 hours. I know others work on 10 puffs but ds deteriorates pretty quickly when he starts!

FloweryBoots Wed 19-Oct-11 09:36:24

Thanks Sirzy. We had to give him 4 puffs at about 4am and another 4 this morning once he was up so we're off to the docs at 10am! I can already hear him rattling again but he's still happy so it can't be too bad!

Sirzy Wed 19-Oct-11 09:44:38

Hope you get answers at the docs.

Ds is always happy while ill strangely, I have a fab photo of him stood in a cot on oxygen with a massive smile. Actually his first smile at 8 weeks he was on oxygen to!

FloweryBoots Wed 19-Oct-11 12:41:28

Hrumph. Came away from the doctors more confused than I went in. Doctor said he wasn't wheezing at all and chest was completly clear. Pretty much told me I shouldn't have been giving him an inhaler at all and in future must come in to the doctors for 'permision' to give the inhaler.

Of course he wasn't bloody wheezing then, he'd had is inhaler an hour before.

Never gave me a chance to give him details of when the cold started, when the wheezing started, what doses we'd given or anythign. When I tried to ask about how we were supposed to know what was wheezing and what wasn't I just got the symptoms to look for that ment he should go to hospital. Well I'm sorry, but I'd really rather prevent a hospital trip if we can and not let it get that far before doing anything about it.

I made an appointment with the Asthma nurse in two weeks time in the hope she might have clearer advice and be willing to listen to a concerned parent instead of just rushing us out of the door as quickly as possible. Grrrrrrr.

alibobins Thu 20-Oct-11 20:48:00

Currently on night 2 of ds1 and 2's sleep study. Ds1 sats didn't really go over 94 and at some points during the night was 88-89 don't know if I should be worried about this? did think it was the machine but ds2 has had it on over an hour and he is sitting around the 99 mark.
Hope little ones aren't suffering too much x x

mumtoaandj Fri 21-Oct-11 13:03:40

hello, can i join the thread. Have been on last year. ds was 2 last week, bronchiolitis at 5 weeks and then severe bronchiolitis at 8 weeks, recurring chest infections, chest recessions and clavical sucking in- a chestinfection every month for first year of his life. antibiotics give him diarrohea and put him off his food. has brown inhaler and blue inhaler. Touch wood no chest infection since firs tweek of august. Specialist thinks they are not chest infections but that his bodies response to a virus is his pipes ?shrink? not sure really anyway- they become clogged up and the difficualty begins. As soon as he has the first soluble steroid he starts to improve. we have the flu injection tomorrow and am hoping it helps. when he is bad it comes on suddenly, his breahting becomes noisey, and obvious and rate goes upto 50 plus. never actually know what to do as it is always t night and the hospital is 30minutes away.
he is always happy smiling though too and never really seems to be too distressed by his problems. i on the other hand get very stressed and tired.

It was all going so well, until yesterday sad

DD1 (5) was chesty Wed night, but otherwise OK. She wanted to go to school, but told her teacher to keep an eye on her. Picked her up from school and she was obviously struggling. I asked her why she didn't tell her teacher she didn't feel well, and she said, 'no one asked me...' sad

Took her to GP and her sats were 95% so she's on Pred.

spoke to the head teacher and thinks it would be a good idea for the community nurse to train all the Year 1 staff who come into contact with DD1 as she looks OK, when actually she isn't.

Knackeredmother Sun 23-Oct-11 12:40:08

Mumto your situation sounds exactly like mine. No answers but exhausting.
I'm off out but will pop back on later to compare notes, support and see how everyone is doing .

judith123 Mon 24-Oct-11 19:51:48

Ive not posted before, sorry everyone is having a hard time, my 5 year old was discharged yesterday from her 5th admission in a year for really low sats when she has a cold, she never audibly wheezes but is struggling to breathe. We have been told she is not asthmatic as she has no interval symptoms when she is well but she has been put on montelukast which I understand is asthma medication. Does anyone have a similar experience, steroids never seem to help when she is ill. We only managed to see respiratory medicine as our nurse cornered them on the ward when they were reviewing another child and asked them to come and see her.

Knackeredmother Mon 24-Oct-11 20:35:48

Judith, my son is very similar to this. Admission with every cold, drops his sats, not much wheezing, responds a bit to steroids, brilliant in between colds.
We too are fighting to see a respiratory specialist. We too saw one by sheer luck on our second to last admission but he still hasn't taken him over.
We go next week to see our general paed and I'm not taking no for an answer re a referral.
The current thinking is my son has a persistent endobronchial infection. He was given 3 weeks of antibiotics but then got a cold on the last day and was readmitted worse than ever.
He is now on another 6 weeks. He's had at least 15 chest x rays but I've stopped them now because it makes no difference to his management.
How old is your daughter?

Knackeredmother Mon 24-Oct-11 20:37:41

Sorry just seen she is 5. My ds is also on monteleukast and even though he has no interval symptoms it does seem to make his episodes less severe when they happen.
You have my heartfelt sympathies.

cedmonds Tue 25-Oct-11 10:13:25

Hi everyone
Ds has now got a coldsad and it has gone straight to his chest just as he was getting better. We are waiting for a private referral as the dr he is under is not treating him as everytime he is seen he is well even though he has seen him in hospital with stats of 90 and lowerhmm. He has got an appointment at the dr on friday for a check up. Just waiting to see if we stay out of hospital this time.

KatyMac Thu 27-Oct-11 16:23:25

Hi everyone, need some info please?

DD (13) has grown 6cms since March which the asthma nurse says is a lot

Her peak flow hasn't gone up at all

So she needs a blood test to see what is going on, does anyone know why?

What would the blood test be for? TIA

roliepolie Thu 27-Oct-11 18:54:45

Hi everybody tried to post a few days ago but for some reason kept getting preview message and wouldnt post.I see none of us are having it easy at the moment,since my last post dd has had a very bad viral infection which affected her chest,nose,ears and throat,and temp spikes of 39.3.Today back to docs with ear infection she now on antibiotic drops for ears which are an absolute nightmare to get in..she runs when she sees me coming with them.Have her back on the singulair for the winter mths hope that helps her..oh and this is all after she got the flu injection

leftmydignityatthedoor Fri 28-Oct-11 00:05:54

Hi all

I hope you don't mind me butting in. I think ds has asthma (like me) and I'm struggling with a diagnosis and have been for *lmost 5 yrs!

When we was little he had a lot of chest infections and even when well for about 9 months he would go to sleep at night then I'd hear him stop breathing, start spluttering and then I'd have to get him up where he'd retch and cough and turn a horrible colour until he brought up clear stciky glue like mucus.

Last year his chest wasn't too bad. At xmas he got swine flu and subsequent pneumonia and imo has never fully recobvered.

He needed steroids in may as he was coughing literally non stop. He's had a bad cough recently too and doc gave a brown inhaler and coincedence or not the cough improved dramatiucally the next day - he has a blue one for when he needs it.

The docs refuse to diagnose asthma because he doesn't usually wheeze, he coughs and he gets breathless - just like me.

Can anyone advise / g

leftmydignityatthedoor Fri 28-Oct-11 00:07:12

Oops - can anyone advise / give me their opinion.

Thanks and best wishes to everyone for winter

BlueAndBrown Fri 28-Oct-11 10:40:29

I've just put a post on the Children's Health board here Can you give me a 'Your Child Has Asthma 101'? and then saw this asthma thread, so I though I'd be cheeky and ask if any of you can help too.

left my DD was the same; initially she only got asthma when she was ill, which they referred to as, 'asymptomatic asthma.' But then she would always get a chest infection and difficult to know where the asthma started and where the chest infection ended. After several trips to A & E, I asked for her to be referred to the respiratory consultant even though she had been diagnosed as asthmatic.

Seems to me that you need a Care Plan. Is there an asthma nurse attached to your GP surgery?

Knackeredmother Tue 08-Nov-11 12:25:55

How is everyone doing?
We have finally got a respiratory referral after 2 blue light admissions in the last month. Ds is on week 5 of antibiotics and starting with ANOTHER bloody cold so we are bracing ourselves for another admission this week. The antibiotics don't really seem to be making much difference tbh.
I hope the fact this thread has gone quiet means everyone else is ok?

cedmonds Tue 08-Nov-11 12:37:26

Hi knacked hope you get some answers from the referral.
DS went to Great Ormond Street last week and is now on seritde as well as the montelukast. He had another xray done which showed some shadowing which they think is scarring from the phemionia, and not another infection,. He is doing OK at the moment but is still getting very tried and bad tempered, and needing ventolin at school before play time and PE
hope everyone else is ok

Knackeredmother Tue 08-Nov-11 14:05:10

My friend is a paed at gosh ced, it's is good that you go there. Has your son had many xrays? I've lost count of the number my son has had and have put a stop to them now. They are blindly ordered by junior doctors on every admission and make no difference to his management ( not sure they even get looked at tbh).
hope your ds picks up with new meds.

cedmonds Tue 08-Nov-11 17:46:46

Yes he has had a few same as you on every admission.

cedmonds Tue 08-Nov-11 17:49:11

sorry pressed post to soon he saw DR Suri at GOSH. They have had to put a stop on the ammount he has as well but as it was an new pead they wanted to see and check there was no infection left.

Sirzy Tue 08-Nov-11 19:00:26

Our hospital are great with x rays and only do them if really needed. He has still had about 5 of them but compared to the amount he could have had its low. Only when he has been really bad they do them.

cedmonds welcome to the Seretide club sad. DD1 is on Seretide 125 and it really has made a difference in conjunction with Singulair. She also gets 6 puffs of Ventolin every lunch period.

When I tried to reduce her Seretide, she developed night coughing a few days later, and the consultant said not to reduce for the moment. She gets measured every appointment as steroids can affect growth, but fortunately hasn't <<knocks on wood>>

Am having difficulties managing her asthma at school as the teachers don't recognize the signs, so am seeing the asthma nurse at Children's Hospital next week to discuss.

cedmonds Tue 08-Nov-11 19:29:31

ilove sorry you are having a hard time i didnt want ds to be put on seretide but he couldnt carry on how he was. Have you got a school nurse that you could talk to ours has been really helpfull with ds. He has got a fantastic teacher this year who is great about him having meds at school and is over cautious about his asthma, which is what i would prefer rather than last year.
DS is also measured ever appointment and he is tall for his age, but very skinny.

cedmonds I know what you mean about the reluctance re: Seretide. DD1's consultant though pointed out that it was less steroids if it prevented her having to have pred, which had been needing fairly regularly.

The school nurse situation. There is a community school nurse who is scheduled at some stage to train all the Year 1 staff who come into contact with DD1. There isn't a nurse at school, unfortunately, so will mean the teacher is responsible. Seems a huge burden as she has 29 other children to look after (with an assistant...)

How is everyone else doing?

We got the reminder for flu vaccinations. Anyone else doing them?

Sirzy Thu 10-Nov-11 16:41:59

Ds had his flu jab a few weeks back.

cedmonds Fri 11-Nov-11 19:47:22

Ds had his flu jab end of sept.
ilove i know what you mean about it being a burden on the teacher. Luckly Ds is in a small class which a teacher and t a. The school nurse which like you is a commuity nurse . I had a meeting with her about ds today and re doing the asthma trainning with the staff. I was a bithmm when ds came home and said that a teenager helping had given ds his ventolin at school. I think she is first year sixth form but even so it shouldn't be given medication to children.
Hope everyone else is ok?

Sirzy Sun 20-Nov-11 15:41:12

Hmm Ds is wheezy and clingy today, but still going off happily playing at other times. Started the ventolin and fingers crossed he hasn't got something brewing.

Knackeredmother Sun 20-Nov-11 17:07:09

Fingers crossed too Sirzy. Sometimes I think it's the feeling of dread rather than the actual illness that's worse.
We've just got out of hospital with ds. I think this is our 4th admission since I started this thread. This time both the ED and paed consultant oncall today have promised to personally chase the respiratory referral and he is now on his 10th course of pred in as many months.
I am exhausted, I had to sleep in my clothes on a plastic chair, the facilities are just shocking for parents and children at our hospital.

Sirzy Sun 20-Nov-11 17:18:55

Your right about the feeling of dread, probably not helped by the fact it's 12 months this week since we spent 8 days in with pneumonia.

Hope you get a refferal sorted soon, is there not another hospital you can go to?

I am lucky our peads unit is fantastic and really look after parents aswell as children.

BramblyHedge Fri 25-Nov-11 10:34:19

Just checking in here for first time as ds2 (3) is in hospital with asthma and beginning to become a more regular concern. i posted in chat last night, www.mumsnet.com/Talk/_chat/1350662-ds-gone-to-hospital-with-asthma-and-i-cant-go-any-experienced-parents-of-asthma-sufferers-out-there?msgid=28667545#28667545

Feeling really useless as can't get hold of dp to see how my ds is. I don't think he has it too severe but also not sure how concerned I should be going forward. He doesn't seem to be an allergic (is atopic the word?) child but he has never had a cough that hasnt gone to his chest. As it seems to be illness related I am unsure if i should be looking at issues like dust, home environment or if that is irrelevant. Any great sources of information out there?

ElmoFan Fri 25-Nov-11 10:56:43

Hello everyone .

Haven't been on MN much lately as DD has been very sickly again the last few weeks sad She has croup . Can't seem to get over this dose , she also has throat & ear infections so her temp has been up a lot the last 3 weeks . Ds also has croup now . I am sooo worried heading into this winter , the weather here(Ireland) is still quite mild ATM , dreading when the snow and ice hit .

Sorry to see your little one's are not doing too good either x

Knackeredmother Fri 25-Nov-11 13:11:19

I am too tired to give advice (ds has severe hand foot and mouth for the 2nd time in 6 months, probably picked up in hospital last week while on pred) but just wanted to say hang in there everyone.
Tis a shit time but must surely pass.....

ElmoFan Fri 25-Nov-11 13:45:41

Oh Knackered sad poor you and your Ds [hugs] x

cedmonds Fri 25-Nov-11 16:53:51

brambly hedge
Dr will not usually say it is asthma untill they are older. This is because all the tubes are smaller and this can cause viral wheeze. If he only gets asthma like symptoms when he is ill it may well be that not that i am a Dr or anything.
What inhalers has he been given? Are they going to refer him to peads?
If you think it is from dust etc you should wash bedding at 60c. You can also put any cuddly toys in the freezer overnight.

DS has had more phemionia but got over it reasonably well for him. He is back at school this week and has just got back from football and only had two puffs of ventolin so i think the seretide is working.

BramblyHedge Fri 25-Nov-11 20:30:25

Hi cedmonds. You are right, they have always said viral wheeze, nudge wink probably asthma but not putting it in writing. So hopefully it might just be viral wheeze but it has always been strongly suggested it is asthma. He just has a blue inhaler and has been given a three day course of steroids. Been told to go to gp and discuss at some point. He has never had a cold or cough which hasnt gone to his chest and has been in hospital 3 times with this. I am hoping he does grow put pf it and it does end up just being wheeze.

Hope your son is feeling better.

TheSecondComing Mon 28-Nov-11 11:44:24

Message withdrawn at poster's request.

BramblyHedge Mon 28-Nov-11 11:54:43

How long do these attacks usually last. Ds first went into a and e on Wednesday night. he then returned Thursday night and was given pink steroids for three days and sent home next morning. he ha had regular inhaleraler since and is a bit up and down. he is still wheezing and has recession. not sure if i should just continue with inhaler or see gp. i probably will bit having got dp in bed fo 5th day in row, dd 9m at ood last night with bronchiolitus i am losing perspective

TheSecondComing Mon 28-Nov-11 11:58:23

Message withdrawn at poster's request.

BramblyHedge Mon 28-Nov-11 12:05:15

Thanks. he was also admitted 7 weeks ago for same thing. i have never known him to be ill and it not go to his chest and he has had the inhaler a while, just seems to be getting worse.

Sirzy Mon 28-Nov-11 12:14:35

With DS it varies in length.

The first time he was admitted to hospital with an asthma attack (rather than bronchi as it has been before then) he was in for 8 days in total and took another 2 weeks or more at home to fully recover. Other times he has recovered in the space of 3 days well enough to come home and fully recovered in a week.

He always seems to take a long time to get back to normally fully though, although since being on the brown inhalers his bouceback time has increased a lot!

TheSecondComing Mon 28-Nov-11 12:16:40

Message withdrawn at poster's request.

Sirzy Mon 28-Nov-11 12:21:31

He is just turned 2, had chest trouble since he was 8 weeks old so its second nature now. He has a cold at the moment and touch wood he is coping well on just 5 puffs every 4 hours so I am hoping we manage to stay home. He has his asthma clinic on Thursday anyway so she can check him over then.

I find the "day to day" problems worse than the illness ones at times though strangly. Things like him not being able to walk or run around for as long as a normal 2 year old are starting to become more of a problem now he gets older and doesn't want to be in his pram!

alibobins Mon 28-Nov-11 12:50:10

Ds2 is not well he's got a cough and wheeze sad we are managing at home so far but have an appointment at 4.30 with docs. Up until this point we were doing well with only 1 a&e visits and that was ds1.
Sorry to hear others not doing so well.
We have steroids and a nebuliser at home but I'm a bit reluctant to use with ds2 as I don't really know his limits yet. With ds1 I know when to try at home and when we need extra support I just worry that it gives me confidence to saty at home when really they need more support.

TheSecondComing Mon 28-Nov-11 15:00:38

Message withdrawn at poster's request.

cedmonds Mon 28-Nov-11 15:56:03

HI
Sorry everyone is having such a rough time sad
Ds was sent home from school today as his ventolin wasn't working.
He has had a neb and doesn't seem to bad now so hopefully he will stay at home.
TSC Have you tried ribena and in the smallest amount we normaly get away with about 10ml and lots of briberygrin sweets normally work

BH When ds is bad he has been in hospital anything from two nights to over a week. He will take a while to recover as well. If he stays at home it will normaly always be a week off school doing nothing and if he is really bad he will then go part time for a week afterwards.

Sirzy Mon 28-Nov-11 18:31:38

I was going to say Ribena to! I love the nurse who taught me that trick, makes life much easier!

second here's what I do: get a shot glass blush and put in the pred tablets with just a splash of water, and I do mean just a splash. Let them dissolve, and add a small amount of Calpol, about 5ml.

TheSecondComing Mon 28-Nov-11 21:28:18

Message withdrawn at poster's request.

Sirzy Thu 01-Dec-11 16:02:53

Those who have Los on clenil what doses do they have? Ds is just 2 and just been increased to 400mg a day which seem a lot?

TheSecondComing Thu 01-Dec-11 18:16:48

Message withdrawn at poster's request.

Sirzy Thu 01-Dec-11 18:33:09

Oh no hope you not in to long. This time last year we were just coming to the end of our pneumonia stay.

Hope everyone is doing OK?

DD1 had an appointment with the asthma nurse at Children''s Hospital, mainly as there was an incident a few weeks ago where she was quite poorly, but didn't tell the teacher, and her O2 levels were around 90% sad. Anyway the asthma nurse was brilliant and is making a card for DD1, so when she feels poorly, she hands the card to her teacher, and the teacher gives her Ventolin.

Poor DD1. She was telling the asthma nurse that she is told not to interrupt, so felt unsure about communicating about her asthma sad sad

Hopefully the card system will make it easier.

Knackeredmother Sat 03-Dec-11 16:27:20

Hi all, just checking in. I'm sad to see lots are struggling but thats winter eh? It's crap.
We've finally seen the respiratory professor who although isn't actually doing much has reassured me ds doesn't have an underlying cardiac or imunology problem which was my worry.
He has told me 'he will take my problems away'! I bloody hope so!
As an aside have any of your lo had the chickenpox vaccine? I'm going to push for it as it is very serious if caught within 3 months of a course of pred. Given we are virtually always within 3 months of a course of pred it seems prudent to vaccinate but I just can't afford to do it privately.
Anyway, big hugs to you all (not allowed I know but needed on this board!)

Sirzy Sat 10-Dec-11 20:58:09

Hope everyones los are as fit and healthy as can be expected at this time of year.

Quick question. DS normally doesn't have trouble with a cough with his asthma but is struggling at bit with it at the moment. Giving him extra ventolin especially before bed but not really helping a lot. At what point do you get the cough checked out? or is it even worth getting it checked?

cedmonds Sun 11-Dec-11 17:46:51

Hi
Ds has had a horrid virus which has gone on and on. He is on lots of ventolin. At least he is going to GOSH this week so the can see him when he is not good.Hope everyone is ok?
sirzy Has he had a cold or anything? I tend to get ds checked as it can be the first sign of his asthma getting worse. He is also prone to infections.

cedmonds DD1 has had the virus too. She woke up a few nights ago with this terrible cough and gasping for air and saying, 'I can't breathe...' Scary, but it was all in her throat. Croup, I think? Anyway, went into the shower room and turned on as high as it would go and sat in the steam for half an hour and that seemed to help. Gave her a ton on Ventolin anyway, just in case.

sirzy I usually get it checked if DD1 is struggling as she too is a 'silent' asthmatic.

Sirzy Sun 11-Dec-11 18:08:33

Thank you both. Will try to get him to the nurse this week, it's only 2 weeks since she increased his clenil but said it may not be effective and might need something else.

Hope your Los both feel better soon

cedmonds Sun 11-Dec-11 21:24:37

iove Croup sounds like a barking seal
sirzy How old is ds now i have lost track of time? Have they tried him on an antihistame or montelukast? Both worked really well for ds when he was little.

Sirzy Sun 11-Dec-11 21:28:06

He has just turned 2. I think montelukast is the next thing they are planning as he is on 400mg of clenil a day so that can't go any higher!

grin @ barking seal!

sirzy they may want to change his preventer. Clenil didn't really help DD1, and she went to the orange one (can't remember name) which also didn't really help, so now she's on Seretide which seems to help <<knocks on wood>> in addition to singulair. her attacks aren't as frequent or as severe and she hasn't had to be blue lighted to hospital in over a year!

cedmonds Mon 12-Dec-11 19:32:57

Hi clenil didnt really help ds either the orange one you are talking about is flexitide. Ds was on it before the seritide.

Sirzy Sat 24-Dec-11 19:29:06

A quick visit to wish everyone a very happy, and healthy, Christmas!

gemjays Fri 30-Dec-11 20:44:00

So glad I have found this! Hi I'm new but god am I stressed! So I shall give you a run down.. My daughter is now 2 but at 10 days old she got bronchilitus, had it so severe she was in high dependency on CPAP and was minutes away from being put on a ventilator. Ever since then she has NEVER shifted the awful gagging cough she is on ventolin and atravent and a month ago was given the steroid dissolvable tablets after a bad spell. She's now on a clenil inhaler too... However nothing seems to shift her cough, she sounds awful she can't sleep and she cannot get overly active as she has a mild attack. It is breaking my heart and also frustrates me so much that my GP doesn't seem to actually do anything to help!!! I want an asthma plan, reassurance etc etc.. Haven't slept in days just want to take it all away from her. Although luckily she knows no different so it seems to bother me more than her!

Sirzy Fri 30-Dec-11 21:13:26

Hi Gem, that story sounds so similar to DS. He had the bronchi at 8 weeks and ended up on CPAP and was prepared for transfer to be ventilated by narrowly missed it.

How long as she had the clenil? It isn't immediatly effective so hopefully after 2 weeks or so you will notice a difference. If not go back to your GP and if he wont help ask for a refferal.

How is everyone else?

DS ended up in A and E with a croup attack on tuesday, his chest has been awful since and now on antibiotics for a chest infection. Hoping to keep it under control at home with high doses of his inhaler.

ElmosChristmasWish Sun 01-Jan-12 18:46:43

Hope your ds is on the mend soon sirzy sad
DD has been battling on/off with croup since mid November , it's a horrible dose .

Sirzy Sun 01-Jan-12 19:01:28

He's getting better, spent yesterday on childrens ward getting his asthma under control but managed to come home last night on pred and high doses of ventolin. Thankfully they have moved him back to consultant care rather than gp care to

alibobins Sun 01-Jan-12 20:53:32

Glad to hear he is feeling better sirzy can't understand how u ended up on gp care with your ds's problems glad you back under the consultant. What meds is your ds on now is he on singular?

Ds2 hasn't been well over the last 2 weeks with several trips to the gp pred and antibiotics I thought we were turning a corner but today has been awful sad just packed a few things into a bag just incase we make a middle of the night dash. (usually being prepared means it doesn't happen lol)

Ds1 seems quite stable (touches wood) but he is on high doses of maintenance meds.

Wishing everyone a happy and healthy 2012

Sirzy Mon 02-Jan-12 09:56:46

Hope he was ok last night!

Ds is currently on 400mg of clenil a day which isn't working anywhere near as well as it should so meds are going to be reviewed at his next appointment! Meant to be moving to 6 hourly ventolin today but he has different ideas 3hr 45 mins and the coughing and wheezing starts!

cedmonds Tue 03-Jan-12 10:16:33

Hope everyone is having a better time today. Its been so quiet on here so hopefully everyone else hasn't be having a hard time.
Ds has got a horrid cold but seems to be ok. So hopefully the seritde is working. He went up to GOSH just be Christmas and they were pleased with him. He has been transferred on to the NHS as well and is going to see a gastro DR for his allergies etc. So hopefully we are getting somewhere with it all at last.
The DR at GOSH has said they want him to have a local DR here so if he gets admitted they know what he is like when well. They will also have a copy of his notes from GOSH so they know what they are doing.
Fingers crossed for an problem free 2012

alibobins Tue 03-Jan-12 21:35:38

Sorry for not getting back to this thread sooner x x Ds2 managed well up until 4 then ventolin just didn't seem to touch the sides sad so off we went to a&e he was given a nebuliser in a&e then another on the short stay ward. We were seen by the doctor who was happy that we carried on treatment at home as ds2's sats were okay throughout just recession and bad wheezing.
Today has been a bit rocky at times but better than yesterday so hopefully he will be turning a corner.
The doctor did say it's bronchi season and as ds2 was rsv- then to keep an eye on him for any deterioration.

sirzy have they mentioned singular? ds2 is on that and flixotide, atrovent and ventolin at the moment.

festiemum Fri 06-Jan-12 12:13:39

Hello, thank you for sharing your experiences. I am on a similar path and wonder if I could join you. Our story (hopefully briefly!):

Dd is 2y 8mo. Until early oct, she'd never had an episode of wheeze. The first time followed a cold and resulted in neb at gp's and pred. During oct and nov 2 more episodes dealt with by GP with pred prescribed. Early dec, blue lighted to hosp- lots of nebs, more pred and we learnt the 10 puff technique. After xmas - GP woefully unconcerned, sent us away with pred, leading to..... Blue lips and unconscious episode, blue lighted, hosp, nebs pred etc.... Just got back from a 2 day stay.

She's now on clenil. And we have an out patients appt for 8 weeks time. So, it feels like we're being taken seriously now, which is good. But how do you deal with the fear?! We live 50 mins from the nearest A&E. Sometimes that terrifies me! On weds the ambulance arrived within about 15 mins and got her straight on a neb, which was reassuring, but I can't help thinking 'what if' which I'm sure is natural, but not very helpful!

Thanks for reading my essay. This thread is such a godsend! thanks

Sirzy Fri 06-Jan-12 12:29:57

Ali - at the hospital last week they seemed pretty sure he would be started on singular when he goes back. Just got to wait for an appointment to come through now. He isn't liking any efforts to reduce ventolin though we have currently managed to get to 5 puffs every 5 hours ish so think it is going to be a long haul to get it back under control this time.

Welcome festie! Hopefully the clenil helps get things under control for her, DS was in and out seemingly every other week until he started on that but now it is more controlled although still far from perfect!

As for the fear, it gets slightly easier as you become more aware of the early signs so you can react with extra inhaler and straight to A and E before it kicks in properly if needed!

In my experience GPs seem pretty useless when it comes to young children and asthma. We have been advised to skip the GP and head straight to A and E as DS tends to deteriorate pretty quickly when it starts.

festiemum Fri 06-Jan-12 18:05:22

Thanks sirzy.

You've confirmed what I was thinking re GPs ! Really glad the hospital have taken her on as a patient now.

Thank you also for your advice re the fear. I think you're right, I should get better at spotting when she's getting poorly earlier, and I also need to develop thicker skin. The first ambulance crew were sceptical that she needed hospitalising. He changed his tune when we were in the ambulance and her O2 sat had dropped below 90.

Need to trust my instincts I think. Hopefully the clenil will help, though I see from your earlier posts, it hasn't been a miracle cure for your ds. Do hope they find something that works for him.

Could someone fill me in on the Ribena trick too? Many thanks. smile

Sirzy Fri 06-Jan-12 18:18:42

For a lot of people the clenil works wonders. My sister has been on it since 3 and been well controlled all that time pretty much.

Ribena in pred by any chance? Instead of mixing with water mix with Ribena/blackcurrant juice as it makes it taste much nicer apparently.

festiemum Fri 06-Jan-12 19:13:08

That's good to know, thanks. Should it be neat Ribena or diluted?! Sorry full of daft questions. Despite being asthmatic myself, feel like I'm completely entering new territory with dd!

Sirzy Tue 10-Jan-12 19:45:45

Hope everyone is doing well.

quick question. After a bad attack how long do you find it normally takes to get inhaler levels back to normal? Nearly 2 weeks down the line DS is still needing 15 - 20 puffs of ventolin in any 24 hour period. Is that normal?

alibobins Tue 10-Jan-12 21:30:30

That seems quite alot sad is it lasting the 4 hour mark? if it is I would slowely try and reduce it and if he doesn't cope go back and see gp.
When is his consultant appointment?

Sirzy Tue 10-Jan-12 21:57:23

He is lasting 5-6 hours generally. At the consultant on the 1st of feb so will just keep trying to reduce the amount he is having between now and then and see what she says.

festiemum Wed 11-Jan-12 08:39:47

I'm no expert, but I would say if he's managing 5-6 hours between puffs, then he's doing ok.

I'm being much more cautious about weaning dd off the ventolin this time, because her last episode was so severe. It's been a week, and she's averaging 24 -30 puffs, but mostly going 6 hours between now. The doctor who spoke to me before we were discharged was at great pains to emphasise that she was weaned off gradually, and I'm going with my gut.

Obviously, that said, if you find he's struggling and needing it more often, that's when you seek medical help. But you know that! smile

mumtoaandj Thu 12-Jan-12 20:59:10

hi i dip in and out of here-just needing a helping hand or shoulder. My 2.3 year old, like many had bronchiolitis at 5 weeks and again at 8 weeks old, then a chest infection every month until he was 1.5. We are under a paedatrician, he has brown inhaler and blue inhaler.Since November his ches thas been bad- we honest;y have been at the doctors every other week. Nights are terrible.They ve given him antibiotics which dont work. Soluble steroids do work but then as soon as they stop the course it returns. He has a wheeze but also crackles. He does not complain about his problem which is good! I am now back at work and the child minder does not want him-he is too ill for her! I have taken him back today to the doctors and got anohter course of orla steroids- he is using his neck and rib muscles, is wheezy-upper and nasal sounds and is coughing loads-at the moment he is asleep and he seems to be using his tummy instead of his lung area to breath. i have rung his paedatrican but she has not got back to me. There must be something more I can do or give him. i up his inhalers and give upto 8 pufffs of blue but it soon wears off. Should i be demanding something else? some magical cure?

Sirzy Thu 12-Jan-12 21:08:04

From what you have said I would be considering taking him to A and E tbh, he may need a nebuliser to help him out a bit. Any sign of recession and I have been told to take DS in.

In the long term what dose of brown inhaler is he on? perhaps that needs increasing or looking at another drug?

mumtoaandj Thu 12-Jan-12 21:16:27

he was using his auxillary muscles(is that right) when i took him to gp tonight.
brown inhaler is 2 puffs morning and 2 at night, i also give 2 blue at same time-then blue whenever. He is next to me now-the steroids have helped his cough but his breathing is crackling. His breathing rate is 34 which is ok-i think?
the hospital is 25 minutes away over the moors.
i hate nights like this.

Sirzy Thu 12-Jan-12 21:19:34

I know what you mean, trying to decide what to do is always hard I am never sure when we need to head to A and E but now work on the if in doubt get him checked idea.

Hope he is ok x

mumtoaandj Thu 12-Jan-12 21:26:30

he is sleeping well- will see what he is like when he wakes. I kind of wish he complained more when we saw the doctors cos he smiles and lifts his top to show his chest and for them to listen to him. I know too that he'll be like this until maybe march- which is difficult for the child minder to understand as she thinks he is contagious. i am sure he isnt.

Sirzy Thu 12-Jan-12 21:32:18

DS is the same, always happy even when ill. Makes me sad in a way he is so used to it, but at the same time does make things easier really. Thankfully the hospital know him well enough to know that he can be happily playing but his sats still low enough to need oxygen.

I would certainly push for them to change his medication as it should be more controlled, DS was really bad last winter but then they gave him the brown inhaler which made a massive difference, when we noticed it was less effective they increased the dose straight away and now we are looking like needing another medication to keep things right.

Hope you can make your childminder understand, I am lucky that DS nursery are happy to take him as they have staff trained in asthma management so as long as he isn't contagious and is happy in himself he can go in.

mumtoaandj Thu 12-Jan-12 21:41:59

how do you know when they are contagious? i m sure he cant be because we dont get it? i think its more likely that the other children weaken his immunity so as soon as a bug catches him he responds with this breathing/cough/asthma thing?

Sirzy Thu 12-Jan-12 21:46:52

When he is really bad he always ends up in hospital (and then off nursery for 2 weeks anyway) so I can go off what they have told us. With him his day to day problems just come and are obviously asthma not illness IYSWIM, he has never had an infection which hasn't landed him in hospital.

alibobins Sun 15-Jan-12 10:14:45

Well this cold weather seems to have set us back a bit sad ds2 has lost his voice got a croupy cough and wheezy so back on the pred we go sad

Ds1's school are really good at having him in although he still hasn't made a full week since september [sighhhhh] even when he was in private daycare they were really understanding and even had training from the hospital to manage his asthma plus his allergies he has got an epipen too.

cedmonds Sun 15-Jan-12 10:53:26

Hope the pred does it job alibobins.
Ds is also suffering with the cold weather he has a horrid cold and had a attack last night. He is lying on the sofa coughing away, and needing ventolin ever four hours.sad. I think we will be going to the gp tomorrow for antibiotics.sad

Sirzy Sun 15-Jan-12 11:07:25

Hope they are both better soon.

Ds is plodding along at the moment, although getting frustrated he has to go in his pram rather than walking if we are out for more than 10 minutes. At least we only have two weeks until his consultant appoinment

alibobins Tue 17-Jan-12 13:08:00

Ds2 seems to be finally on the mend and has ventured off the sofa today smile still wheezy but nothing like he was x x
Cedmonds hope ds is feeling better.

cedmonds Tue 17-Jan-12 15:48:10

Hi Glad he is getting better alibobins
Ds went to school today had no choice really as the education welfare officers have got involed. He is OK wheezy when he came home and has just lied down doing nothing. He is on 10puffs of ventolin 4 hourly at the moment and has antibiotics.

alibobins Tue 17-Jan-12 20:42:09

Cedmonds that is awfull why have they got involved? ds1 hasn't made a full week since september and school are fine with this as it's a medical issue.
He still sounds really down sad

cedmonds Wed 18-Jan-12 11:00:13

I dont know why he has had a lot of time but know I really dont understand as the school have got all the peads letter inculding GOSH. The doctor is going to have a meeting in school in Feb about him. I think half of the problem is he can look so well even though he isnt if that makes sense. He has been in hospital bouncing up and down in bed whilst on oxygen and having really low stats.sad
School phoned yesterday and said why wasnt he doing PE as he looks so well hmm they made him do it and he only lasted a couple of mins.
I am hoping that when they have the meeting it will all be sorted.<fingers crossed>
Hows ds2?

alibobins Wed 18-Jan-12 12:34:22

Ds2 is still not himself sad but we are back at the doctors Friday x x
That is the case with Ds1 he looks so well and copes so well the consultant said children quickly adapt to not being able to breathe properly and get used to the feeling sad X x

cedmonds Wed 18-Jan-12 16:11:19

Poor ds2 hope he is ok and you stay out of hospital.
I think the sudden change in weather is making at lot of the asthmatics suffersad. I know my dn is suffering and my sister.

Allboxedin Wed 18-Jan-12 19:38:49

Hi all, I found you!!
We are going through the same with our 2 yr old. Just got out of hosp sunday for attack which is 6th/7th time she has been rushed in with blue lights. She didnt respond to the usual nebs this time and was put on IV's. sad She had wires and monitors everywhere.
Much better now but this is happening every 4-6 weeks and it is exhausting as you all know. Its good to have this thread to run to and share on.

alibobins Sat 21-Jan-12 11:26:40

Allboxedin sorry you have had to find us sad it does sound like u are having a rough ride ds1 always used to end in resus and on lots of medication to control his attacks but he is now 7 and well controlled on a cocktail of drugs x x we do have a home nebuliser but only to use whilst waiting for an ambulance or for maintenance when discharged from hospital x x

Ds2 is doing much better doctor was happy with his progress but wants him to stay on a low dose if pred for another 7 days and work on reducing his blue inhaler x x

Sirzy Wed 25-Jan-12 20:28:07

Allboxedin, hope things are better for you soon.

DS is bad again, hoping to avoid a trip to A and E tonight. Back to hospital next week so hopefully will get him under control then.

alibobins Wed 25-Jan-12 21:26:29

Sirzy sorry ds is bad again sad ds2 has had a relapse again although think it is more his throat thistime with a wheeze thrown in for good measure lol x x

Sirzy Wed 01-Feb-12 14:19:27

Well we now have singulair granules, how long do they normally take to make a difference?

alibobins Wed 01-Feb-12 19:13:45

sirzy was anything else suggested? both boys take singular I am not sure how long it takes to work but some people only take it during a cold so maybe it is quite quick.

Ended up at a&e again sat morning more nebulisers steroids and antibiotics sad ds2 does seem to be improving slowly.

Sirzy Wed 01-Feb-12 19:17:00

No, she wanted to stick with the clenil with the singular for now. I hope it works and does so quickly!

Hope he feels better soon.

Jakeandsophiesmum Wed 29-Feb-12 20:07:41

Hi all wanted some advice if anyone can help. My DD 4.7 has had asthma since she was 9 Mths and has had several admissions with asthma related problems (pneumonia x 3) and has even had her tonsils removed at 3 in the hope that a wider airway will allow her to breath in more of her inhalers. She currently takes seretide 125, singular, ventolin, occ pred which we have been advised to keep at home always, and now her paediatrician wants her to start a new drug called Slo-phyllin and I wondered if any of you have any experience of it as some of the side effects look a little scary grin and if it has made a big difference to any of your children. Thanks in advance

jake I don't know, but DD1 is on Seretide, Singulair and Ventolin and her Paediatric Respiratory Consultant says that at her age (she's 5) she's pretty much at the maximum dose and he wouldn't want her to be having any more medication unless really really necessary. Having said that though, her asthma is fairly well under control, so guess what you need to find out is what are the bench marks as far as getting her asthma under control, i.e. lack of admissions, peak flow at a particular range etc.

cedmonds Fri 02-Mar-12 16:19:12

Hi
jake
I agree with i love ds is also 5 and is on seritide ventolin and singulair. We have been told by great ormond street that it is the maxium that he could have.
But it does depend i think on how well controled they are. If she is having lots of admissions/attacks they will want to change her medication untill she is under control.

alibobins Sun 04-Mar-12 06:59:56

Hi Jake ds1 is on same meds as previous posters but is also on an antibiotic called Azithromycin which has helped loads this winter no major admissions smile

Having a really bad time with ds2 was up most of last night with another attack sad they seem to be happening quite frequently at the moment. He is also developing mire and more allergies and gas quite a scary reaction to tomato just over a week ago x x spoke to his lovely consultant who is seeing him on Wednesday x x

Sirzy Sun 04-Mar-12 07:22:55

Ali hope Ds is better soon and things stabilise.

6 weeks on singulair and the difference for Ds is amazing - for the first time we can consider going out without his buggy as he can walk without getting breathless.

alibobins Sun 04-Mar-12 08:34:02

Really glad things are improving for your ds smile
We are the opposite ds2 gets out of breath so easily it's so frustrating when all they want to do is run around and have fun sad

Sirzy Sun 04-Mar-12 08:36:54

It is horrible to see isn't it, especially when they dont understand why they have to sit still for a little while. Hopefully you get some answers on wednesday

alibobins Wed 07-Mar-12 19:52:58

I am so glad we saw the consultant today as ds2 was really quite poorly sad he's had chest x-ray which shows some cloudy patches his sats were 95 and showing slight tugging we have been allowed home with pred and 10 puffs of ventolin every 4 hours and strict instructions to go to the ward if he gets worse x x ds1 is having some surgery tomorrow so hope I don't end up with both on different wards sad

Hope the quietness means all is okay x x

alibobins Fri 09-Mar-12 19:08:06

Ds2 managed well untill this morning sad we have spent the day on the children's ward and have come home with antibiotics and inhalers every 2 hours x x

hello! Any advise please? After a horrific episode of being blue lighted to Children's Hospital sad sad and a scary incident with DD1 being at school (long story) she still isn't really back to normal. Ugh. The GP prescribes anti biotics and Pred. Consultant appointment isn't for another 3 weeks, and asthma nurse can't really prescribe anything stronger than what she's on....

Not sure what to do.

mumtoaandj Tue 01-May-12 13:26:56

can anyone help. my son was bluelighted last week to hospital he is 30 months old history of chest infections and asthma and was on brown inlaher 4 puffs daily 100mg each puff and blue inhaler whenever. Last week his breathing rate went upto 60 and he was really struggling. His pattern is always the same- every 2/3 weeks he starts with a cough and a temperature then during the NIGHT he rapidly declines, struggling, panting and breaths per minute go up to 45-60. then come monrng he improves, copes ok through the day then rapidly declines at night. this was true at hospital. we were discharged after 24 hours being told his sats were ok and he had a nasty chest infection- we get home he goes to bed then deteriorates and is blue lighted again. Picke dup next day, runnning around then night came and oxgen levels dropped to 82%.

We returned home last night. with new white inhaler which does seem to work, strong antibiotics, mono? chewable tablets and care plan.
My partner during the time we were in has stripped the bedroom of carpet and we are awaiting lino/vinyl type being fitted, am about to order dust mite protective sheets? pillowcase things etc.
what else can i do?

Sirzy Tue 01-May-12 13:49:55

I love - any chance of getting the consultant appointment brought forward? Or a phone consultation?

Mumto - hopefully the new meds will help, until this week the montesculat has made a massive difference to Ds.

After seeing the consultant last Monday and him being happy with everything at last Ds has now been rushed to a and e twice in the last week. Last night had a bad asthma attack home now on 10 puffs of ventolin 4 hourly. They don't want to give more steroids as he has had 3 courses in 4 months so it's now a waiting game and if he has to go back then they will give him them and bring forward his next appointment to review his meds again!

sirzy sad sad.

Good idea. Just spoke to consultant's secretary and she said she would call me back after she had discussed with him. Looks like we're in the same boat of steroids etc, and treating the acute asthma. Today is DD1's first full day back at school since the GP called the ambulance shock shock. It's been a month but am still traumatized mainly as she has silent asthma...

Sirzy Tue 01-May-12 14:06:50

Hopefully you get some answers. Hope her day at school goes well

mumtoaandj Tue 01-May-12 16:37:30

Ohh, my son has had quite a few courses of steroids since christmas- how many shouls/shouldnt he have? has just finished a course of 3 days but had a 5 day curse probably 3 weeks ago and same 3 weeks before that...

mum it's an indication that asthma isn't under control when it's being 'treated' on an acute basis rather than by preventers and Singulair.

What I find really frustrating is that there is no coordination between the GP and Children's Hospital. I've been asked how many courses of steroids DD1 has had in past 3 months. I can't remember! Why can't the GP's records be accessed by the consultant hmm

Sirzy Tue 01-May-12 17:14:50

mum there have been periods when Ds has had more than he has had recently. I think this is just a case of it not being as obvious he needs them so waiting to ensure its necessary as he has had so many if that makes sense!

So far he is doing well with 5-8 puffs every 4 hours. Overnight tonight will be his big test.

Sirzy Wed 02-May-12 19:06:25

I love - how did DD get on at school with the full days?

mumtoaandj Wed 02-May-12 22:01:49

my son is improving the white inhaler seems to work whereas the blue one doesn't seem to have any affect anymore?
can anyone recommend bed linen that is dust mite proof and covers the entire mattress (mattress goes in it?) also for double bed as we cosleep and will continue for sometime.

Can I join in, having a nightmare again with dt2 he's had 2 admissions in the last 2 months, with viral asthma, basically he's fine until he gets a cold then goes straight to his chest and breaths very rapidly and goes pale etc.
Took in to gp again today, after 2 days of rapid breathing, he 's got a chest infection, and and steroids again and 10 puffs of ventolin every four hours. His sats were 95 at the gp.
Anyway as always seems to be the case at night he's worse now with his sats hovering around 89. His breath rate is about 40 so not too bad. He's fast asleep really don't want to drag him to out of hours, but worried about his low sats.

sirzy thanks for asking. She's been quite tired, so pleased that her school is a polling station so she's at home today. Hopefully we will get an appointment with her consultant in the next week. His secretary is lovely, but she cannot seem to grab ahold of him. I've emailed him, so fingers crossed he will see her either at the end of his clinic or in his office. How's your DS?

Sirzy Thu 03-May-12 23:54:46

Ds was doing well until this afternoon. A trip to the gp has ended up with an overnight stay on kids ward. Hopefully home tomorrow!

Sirzy Sat 05-May-12 08:48:48

Well we got home last night, if he doesn't start sounding better we will be going back this morning sad

Sirzy, we've been in since Wednesday night too, still on 2 hourly nebs, but on oxygen when tired or sleeping, think we'll be here for the weekend.

Sirzy Sat 05-May-12 09:33:56

We just managed to avoid oxygen thankfully. I don't think he would have cooperated with that as well as he did when younger! Hope your Ds gets home soon.

Ds is just curled up on his seat feeling sorry for himself sad they are talking about possibly needing to start him on a long term course of pred which I'm not sure about but we will have to wait and see what happens in the next few months!

Ah bless him sad how old is he?
Dt2 is on third lot of pred in 8 weeks.

Sirzy Sat 05-May-12 09:41:31

2.5 been in and out since he was 8 weeks old so all the staff know him well and he actually likes being there which helps lol!

Must be hard being in with one twin with the other at home. How old is he?

He's 2.10 they really miss each other when apart, dt1 more than dt2 as dt1 is the shy one.
Dt2 has only in the last 6 months had problems, and only when he gets a cold, just very quickly has breathing problems, they are saying viral asthma and have started him on a preventative inhalour now.
He doesn't really wheeze though just sounds chesty, and then starts breathing very fast.
Dt2 likes the playroom but hates been stuck in the bed on oxygen.

Sirzy Sat 05-May-12 09:52:49

Hopefully the preventor kicks in soon and he doesn't have as many problems!

The play rooms are great fun!

large DD1 was the same; they refused to use the 'a' (asthma) word, but eventually put her on preventers and then it was a matter of getting the right combination. She's now on Singulair, Seretide and Ventolin (as needed). Up until a month ago, I was a bit smug that her asthma was under control, but we're getting there.

sirzy hope DS is on the mend and goes home soon smile

How's this for aaaarrrrgggghhhh? Right, after the blue light ambulance trip to Children's Hospital before Easter, I called the asthma nurse at Children's Hospital. Told her not the 26th as we were away that week. She said she would ask for an appointment not for the 26th. So, we get back from holiday and find a letter for an appointment on <<wait for it>> the 26th angry.

And to make matters worse, get a letter this morning from our GP saying that as we failed to attend the appointment, only he could reinstate any future consultations angry. Will sort it out of course and am sure our GP will understand the circumstances, but what a hassle. <<rant over>>

Hope everyone else is OK

Sirzy Sat 05-May-12 15:36:11

Oh no. Hope you get an appointment sorted quickly.

Ds is slightly brighter this afternoon so hoping we have come out the otherside of this attack. The registrar has arranged for his next appointment to be brought forward to do they can keep an eye on things.

alibobins Sat 05-May-12 22:07:05

Hate hate hate asthma sad ds2 has had such a rough time lately saw the consultant on Wednesday and he took bloods did a chest X-ray ECG and booked him in for a repeat sleep study as he thinks ds2 needs his tonsils out but we will see what the results are x

Sirzy Sat 05-May-12 22:12:14

I know that feeling Ali, I also hate the way people assume its mild and a few puffs of inhaler and all is sorted!

Hopefully if your DS does need his tonsils out it makes a big difference for him x

cedmonds Sun 06-May-12 20:53:43

HI, Sorry to see that people are having a bad patch.
Ds has been having a really rough time of it.He went to GOSH to see the gastric drs and they have said they think he is allergic to soya as well as everything else. He had to have a neb and pred whilst he was there as his chest was sucking in and he was very wheezy. He has carried on not being great since. School are refusing to give him ventolin and when he was sent home last week he was sitting in the office wheezing away and had had nothing. Does anyone know if they are allowed to do that. I am having to go in to school to give it to him during the day / before PE. Even though they have got a letter from GOSH saying that he needs it.
Rant over any one got any ideas.

Sirzy Sun 06-May-12 20:56:14

That's awful of the school. What reason have they given for not giving it? Is he old enough to be shown how to do it himself reliably?

cedmonds Sun 06-May-12 21:04:28

Hi Sirzy
He is kind of older enough but needs watching to count inbetween puffs and to make sure the spacer is sealed etc. Also he would have to ask to be given it.
They have just said that they are not allowed to give it. But what happens if he has a bad attack or if a child has an epi pen i don't know. Its not like antibiotics or something its an emergency medication in an attack situation.

alibobins Sun 06-May-12 21:30:07

cedmonds I really can't understand that kind of attitude from school. Have you got a specialist nurse who would be able to talk to school?
Ds1 has got a care plan in place listing what medication to give at what stage, they have even got a supply of pred incase.
At the moment ds1 has ventolin at lunch at school but if extra is needed they give it no problems.
Do they not understand that by not giving him his inhalor they are putting is life at risk!!!! angry

Sirzy Sun 06-May-12 21:34:51

Do the school not realise how serious an asthma attack can be? Like you said its not the same as them giving antibiotics or something. I would be contacting the LEA to ask them to clarify if they are allowed to refuse. What would happen if you weren't in a position to go in?

I am just looking to move Ds to a different nursery and that was the first thing I checked that they can give the inhalers.

cedmonds Sun 06-May-12 22:25:49

Hi
alibobins They had a care plan etc but the school nurse said they were legaly not able to give any medication at school. I am lucky that i only live a few mins drive from school but what would happen if i was out for the day and my mum for eg had to get him she is half hour from school he could be very ill be then. I said this to them and they said it was out of their hands.

alibobins Mon 07-May-12 07:12:53

I would do what sirzy suggests and contact the LEA as I'm not sure they can refuseconfused I work in Early Years and have never come across a school refusing to give medication.

cedmonds DS also has a dairy and soya allergy. Let me know if you need ideas... Re: no medication at school: I would contact Asthma UK. They have been really brilliant at advising me about DD1's episode where she was having an asthma attack at school, asked to go home, said her heart was racing, but wasn't allowed home angry. Took her to GP and she was tachycardia, O2 at 85%, so had to be stabilized before she got into ambulance. The A & E doc asked her what had happened and only then did we get the story. sad

Other than that, is there an asthma nurse at GOSH who could advise? I remember your school has been less than helpful with your DS asthma.

cedmonds Mon 07-May-12 11:23:25

Hi
ilove thats is horrid your poor dd. When did you get her at pick up time had they left her like that sad shock
He is being seen at GOSH soon so will ask they have sent two letters to school so not sure what else they can do. Any food ideas for soya allergy would be great i cant find any bread which he would eat(no seeds in) so its really hard to make packed lunches for him. School complained as he had flap jack and they said it wasnt healthly and seen to be sweets hmm

cedmonds yeah, the teacher came out and said she wasn't well. It was obvious to me that she was struggling, but she doesn't wheeze like Darth Vadar, so can be missed. I would have had more sympathy/understanding for the teacher had DD1 not said to her, 'my heart is racing' and 'I feel sick...' sad. At least the teacher had the good grace to apologize, backed up DD1's version of events, and sent DD1 a card. The head teacher has been very responsive/helpful as has the SENCO.

Re: non soya bread. Tesco own brand oat is dairy and soya free. As far as spreads, we use Pure Sunflower. Be careful with pita breads though. Some have soya and some don't. Most bagels are OK, as are breadsticks (plain ones). I check the ingredients almost constantly though as one brand that previously didn't have soya, added it. hmm. Sandwiches ideas: turkey, chicken, tuna etc. Crisps, tortilla chips. Smoothies.

cedmonds Mon 07-May-12 13:03:21

Hi
Thanks ilove we use pure spread i will look out for the bread as well.
poor dd at least the teacher had the guts to say sorry and tell the truth. Thats also ds problem in a way the he doesnt whezze much but can still be finding it hard work and tucking.He will also keep on going when he shouldnt be and is tucking away.

Sorry just need to vent,
we were reluctantly released this morning, totally had enough of hospital, dt2 managed without oxygen last night although, only found out when i looked at the sats monitor at 6 that it had been off!
Asked the agency nurse why it was off and she said it kept alarming at 89 90 so she turned it off!
He had a temp of 38,2 in the night so had had calpol.
Saw the doctor, who was debating wether to let us go, at this stage dt2 running around the ward and sats 94 so I begged and said we have a home sats monitor.
Anyway back home sats 92 then but him down for a sleep breathing awful again tugging hard bpm 45/50 sats averaging 88. Temp 37.6
Arrrrghh really don't want to go back! He's playing happily now and sats back up to 94.
Don't know what to do, to tired to think straight.

large when in Children's Hospital with DD1, I ask for her to be reviewed at specific time so we can plan. So, maybe it would be an idea to make a decision around 17:00 or earlier, what you're going to do. Maybe if it's just calling the ward, assuming you have an open bed and don't have to go through A & E again. As you know, oxygen levels go down at night, but aren't necessarily the full story.

Sirzy Mon 07-May-12 15:55:43

Oh no. I assume he is still on 5 puffs of ventolin 4 hourly? If so I would take him back if they dip again. x

Thanks so much for your replys, he's on 10 puffs of ventolin every 4 hours then a stronger ventolin type one every 6 hours and a preventor twice a day.
He started a different antibiotic at lunchtime.
We've been given 48 hours open access to the ward.
I'm tempted to leave it to see how he goes when he sleeps tonight, arrgh just don't know sad

Sirzy Mon 07-May-12 16:03:19

It's strange how different hospitals work in different ways, ours won't discharge if your still needing 10 puffs!

You have to go with what feels right, I would be tempted to have a proper meal and then see how he is but go back before bed if needed knowing chances are overnight will get worse.

alibobins Mon 07-May-12 17:17:52

I think I would head back in or at least ring x I hate the waiting around to decide so my new motto is if I'm worried enough to ask then I take him to be checked over x x

Sirzy Mon 07-May-12 17:19:52

That's what I have just decided to. I also give up with gps as they see his history and panic and send us to a and e anyway or they tell me he doesnt have asthma and give antibiotics he doesn't need!

Ds is coughing lots tonight and only managing 3 hours between ventolin so hoping it calms soon x

Thanks again, trouble is I know they ll say come back if I ring, he's playing happily at the moment sats 94 so will carry on at home for now I think.

Sirzy, hope your little one starts to improve too, it's so horrible, think I'm going to push for a referral after this as this is his 3rd admission in 8 weeks.

large if you're happy, then fine. I don't think there are any hard and fast rules, but probably him being with other twin at home will help. I tend to feel guilty when I push for a discharge, but unless she is on oxygen, then any other medication can be given at home, and it isn't as if you're in the Shetland Islands are you? I mean in a remote location, I don't know where you are, so if <<knocks on wood>> he does deteriorate, you can take him back.

Thanks ilove, hospital is only 5 mins away so very lucky.
I'm going to but him to bed as usual, then check him every half hour he's due his next lot of inhalours at 8 so we'll see how he goes.
At least temp not got any higher,

Sirzy Mon 07-May-12 18:06:08

I would push, it is only because of Ds consultant care we have got him as settled as he is (or was!) at last!

cedmonds Mon 07-May-12 18:13:02

HI
Agree with sirzy it has only been since ds was transfered to GOSH we have sort of got his asthma under control. We have a sat monitor at home for ds and if he is averaging 92/93 we take him in as he can get worse very quickly .
Well we have had a rough weekend ended up in A+E today and he is on ventolin every 4 hours 10 puffs and got yet another course of pred.sad I have still got the bag packed so hopefully we will stay out of hospital.
Those of you that have school age children would you send a child in when they are on pred and so much ventolin.Especially with how school are about him. I would have to go in at lunch and do his ventolin so could see how he is . I was going to keep him of school but DH say i and being over protective.hmm Any ideas

Sirzy Mon 07-May-12 18:19:14

From what you have said about the school I would keep him off until it has all been sorted and you are happy that he is safe.

DS isn't school age but I don't send him to nursery when he is on pred, or if he is needing inhalers more than 6 hourly. I know they can cope with it really well but it doesn't seem fair on him or them!

cedmonds Mon 07-May-12 18:26:27

thanks i just needed someone else to agree with me grin

cedmonds no, I wouldn't, especially as he deteriorates so quickly.

We have a system in place now where DD1, if she doesn't feel well, can call home. The internal system phone goes to the office and the office calls me. She also has a 'key worker' who is not her teacher who checks on her 2-3 times a day, and she meets with him once a week for a couple of hours, mainly to build up a relationship as she was very scared to go back to school sad sad and that she wouldn't be able to get help with her breathing shock sad

alibobins Mon 07-May-12 19:30:52

cedmonds I really wouldn't send him in especially with the schools attitudeangry

Hope the little ones stay out of hospitalsad

mumtoaandj Mon 07-May-12 21:16:30

i am a teacher and i do understand why some schools donot give medication but refusing to help with an inhaler is stupidity. It is a complete necessity. I would ring your doctor and get them to write a letter to the school or get a good school nurse involved. If this does not work then i would personally go into school and explain the need for the inhaler- then say look if you cant help give the inhaler then my child cannot come to school when they have any sign of requiring it- stress that this will be many absent days...that should get them looking at their actions a bit better. My 2 year old has asthma and i had to train the child minder how to use it and when to use it etc and what signs to look out for in him. He himself knows when he needs it so i expect a school aged child to know when they require it etc and would never deny a child using their inhaler or asking for assistance giving it. (maybe that is wrong and a sackable offence but i dont care because it could also be life saving)

cedmonds Mon 07-May-12 22:28:19

Hi
Well Ds in deff at home tomorrow his peak flow is still a 1/3 of what it should be . Will see how he goes tonight wether we stay at home.
mumtoandj The class teacher has said that she has got her hand tied and what be happy to give but isnt allowed. They were happier not great but better before the school nurse butted her nose in ! They have got a letter from the gp and GOSH and his local hosptal saying about the ventolin. His attendence is about 65% because of asthma there have been meetings with the gp me and senco head and school nurse and the gp is emailing school every time he is seen / of school. I dont know what else i can do really.

cedmonds Mon 07-May-12 22:29:46

sorry ilove thats better at least there is a system in place now. No wonder she was scared poor thing.

system totally failed this morning. Got to DD1's school and there was a supply teacher there. I asked him if he would be there all day. yes. I asked him if he knew who DD1 was? He said, 'no.' Left to find SENCO who was concerned and promised to check on DD1 every couple of hours smile and would call me smile even if she was OK.

Going to see her GP this morning to try and figure out a plan for her asthma.....

cedmonds Tue 08-May-12 11:00:38

Fingers crossed it works. ilove hope you get somewere with the gp.
How is everyone today? Ds is ok ish at least he is playing today.

Sirzy Tue 08-May-12 11:40:31

Hope you get a plan sorted ilove

Ds is really struggling with his coughing at the moment which only normally bothers him at night. Any miracle cures to help calm coughing fits?

cedmonds Tue 08-May-12 12:28:39

No miracle cures . I have put vicks on DS feet under socks before and that has helped sometimes.

cedmonds Tue 08-May-12 12:29:29

sorry pressed send to quickly you have to be carefull with vicks etc with asthma.

Sirzy Tue 08-May-12 14:27:15

I have heard that before but never been sure how it works with asthma, might give it a try though as is really annoying him!

cedmonds Wed 09-May-12 11:03:56

How is everyone today?

Sirzy Wed 09-May-12 11:30:32

I think Ds is going to cause a world shortage of ventolin the rate he is using it. 2 weeks tomorrow of pretty much solidly using it every 4 hours. I am waiting for the gp to start questioning my repeat prescription requests!

How's your Ds?

cedmonds Wed 09-May-12 11:46:28

He still isnt great sad Playing but getting very tight.

In betwwen them both i think there will deffently be a shortage. This is the second week he is on it every 4 hours. He got more pred today aswell. At least he is at GOSH next week. So will see what they say. THe gp said to keep him of school for the rest of the week at least.

Had a dreadful day yesterday. After dropping off DD1 at school and bursting into tears with the SENCO as the supply teacher didn't know who DD1 was (and therefore how could he be expected to observe how she was doing in regards to asthma), was going to GP to discuss managing at school.

Put DD2 (11 months) into car and manage to lock her into car with keys on the front seat. Emergency key didn't work. DH calls the police and they said they would only break the window (after checking ownership details of course), so DH breaks the window. Awful. DD2 is OK and she was able to see me the whole time, but was crying towards the end. sad Now just waiting for the glass people to repair it.

Spoke to GP on the phone and he said he would try and get the community nurse to help with DD1's asthma at school.

Sirzy Wed 09-May-12 13:35:40

Cedmonds that's what Ds is like. Thinking he may need more pred but that means a trip to a and e as our gp won't prescribe him it!

Oh no ilove that sounds a nightmare!

cedmonds Wed 09-May-12 19:28:40

ilove poor you that sounds a nightmare.
sirzy why wont you gp prescribe it?

Sirzy Wed 09-May-12 21:23:06

Coz he is an idiot!

Not sure really, everytime he has been there needing it we have been sent away with antibiotics instead.

Sirzy Thu 10-May-12 15:27:42

Well Ds has been admitted. Sats 91/92 on 10 puffs ventolin an hour. Started on pred and antibiotics. Bringing in a respiritory specialist to see him.

sirzy sad. DD1 was in the revolving door of A & E, but improved drastically when she got onto the right combination after a respiratory consultant changed her medication. Hope he improves soon...

alibobins Thu 10-May-12 17:21:10

Well think ds1 was feeling left out! We have spent the day at hospitalsad he woke this morning wheezing and said it hurt to breathe so off we went to A&E.
He is on pred and increased ventolin his chest x-ray showed some patches so they want to review him in 48 hours x x

alibobins Thu 10-May-12 17:22:07

Sirzy hope your ds improves soon x x

Sirzy Thu 10-May-12 21:24:30

I love - that's what I am hoping. Although because he is so young (2.5) the options are limited as a lot of things aren't licenced for his age apparently.

Oh no Ali, hope everyone is better soon!

Ds is fast asleep for now. Still needing 10 ventolin every 2 hours at most and at last check his sats where down to 90 so I'm hoping that increases soon!

alibobins Thu 10-May-12 21:55:17

Sirzy- what preventer is your ds on? He is the same age as my ds2 who is on flixotide, ventolin, atrovent, singular and daily piriton so far these are keeing him out of danger although we are still at the in and out of hospital stage with him too.

Hope your ds gets better soon x x

Sirzy Thu 10-May-12 22:26:43

Currently on 400mg of clenil and singulair daily. Anti histamine and ventolin as and when needed. Good to know there are other options!

alibobins Fri 11-May-12 07:43:05

Think there are more options but need to be consultant prescribed x x what kind of night did your ds have? Ds1 still sounds bad so I've given him a neb to try and clear some gunk off his chest x

Sirzy Fri 11-May-12 07:48:17

Much better night, managed to get sats up to 96 at one point smile

alibobins Fri 11-May-12 09:12:15

Has the specialist seen him yet? Hopefully you might get home later today x

Sirzy Fri 11-May-12 11:29:07

Seen the specialist who doesn't want to change anything while he is poorly so is going to see him in clinic in a couple of weeks to see how he is recovering. Also wants to do some allergy testing to find his triggers which will be useful to know!

Hopefully home this evening!

alibobins Fri 11-May-12 16:58:50

Thinks it's always helpful if they see them when they are unwell x hopefully u are home and recovering x x

Sirzy Fri 11-May-12 17:02:35

Ye your right. He spoke a lot of sense which was good and allergy testing wasnt something which had even crossed my mind.

As soon as pharmacy get their arses into gear we will be going home!

allergy induced asthma? Good point.

Our respiratory consultant also hardly ever gets involved when DD1 has an attack as the treatment for an acute attack is usually the same, pred, Ventolin, O2/nebulizer, anti biotics if needed.

alibobins Fri 11-May-12 20:11:23

Ds1 has severe allergies as well as asthma so we have epipens.
Ds2 has just had bloods done for allergies. We are lucky to have an amazing relationship with our consultant and he is bleeped whenever they are admitted x x

cedmonds Fri 11-May-12 21:02:30

Hi
Sorry everyone has been having a bad time. Ds has had the whole time of school. Took him to the park today and he managed five minutes before getting tight and coughing needing 10 puffs of ventolin to sort him out.
Really dont know how long to leave him. Went to the gp today and they said just to carry on. He has got GOSH appointment on Friday next week so will see what they have to say. I have got no idea what has triggered this of either.

alibobins Sat 12-May-12 11:33:34

sirzy hope u made it home x x
Ds1 is looking and sounding so much better. We have got to take im for a repeat x-ray this afternoon so hopefully we won't be hours on the ward.

Sirzy Sat 12-May-12 12:21:35

Yes we are home smile still got a long way to go but hopefully he is well enough to stay home!

Hope the x ray goes ok!

alibobins Sat 12-May-12 19:15:52

Well they decided not to re Xray as his chest sounded so much better x x they have made him an appointment for 4 weeks x x

Sirzy Sat 12-May-12 19:47:13

Thats good news Ali! x

mumtoaandj Sat 12-May-12 22:04:19

my son is 2.7 and was in hospital last week they have put him on the white inhaler which seems to work wonders as the blue and 10 puffs did not work and distressed him. The white is atrovent and he only needs one puff every 4-6 hours. Has your son had the white inhaler?

Sirzy Sat 12-May-12 22:25:19

He had atrovent when he was younger and it wasn't particulary effective with him, although when he has had it mixed with salbutamol in Nebs it has worked well.

Hope your Ds is on the mend now!

Sirzy Mon 14-May-12 09:53:10

Got to share. Ds has just been playing with a teddy, got his drs kit to listen to his chest and do his temp then went to get a peg, stuck it on teddies finger before announcing "sats 96!" - I think someone has spent to much time in hospital

grin that is very cute.

Mothership1 Mon 14-May-12 15:44:09

knock knock !! Please can I join??
Pretty new to MN and seem to be a little late into this thread but feel very much at home reading all your posts!
DS 18mo diagnosed with asthma, at 13mo after 7 hospital admissions and family history, I've just posted in health about his current situation if anybody has 2 mins to take a look and give me any advise?
X

alibobins Mon 14-May-12 20:50:09

sirzy he sounds a very switched on little man smile

Ds1 went back to school today but only lasted untill break as his eyes swelled up and was wheezing sad they had given eye drops and piriton before I got there and he still lookes awful x

alibobins Mon 14-May-12 20:50:38

Welcome mothership1 x

Sirzy Mon 14-May-12 20:55:58

Welcome Mothership!!

He is, he copes much better with it all than me thats for sure! I guess he has never known any different really!

Poor thing, hope he is feeling better soon. Do you know what caused the reaction? x

alibobins Mon 14-May-12 20:58:23

He's got hayfever so I'm thinking pollen but not 100% sure.

HotheadPaisan Mon 14-May-12 21:12:27

Hello, another new joiner. DS2 was admitted to hospital two weeks ago following his third asthma attack in quick succession. He is 2.9 and only developed asthma recently following a series of colds. He has a mild egg allergy too.

I called the emergency doctor out in the early hours because ventolin just wasn't working, he gave him drugs via a nebuliser and left and we managed a bit of sleep. He really wasn't any better in the morning though so we were getting ready to take him to A&E when he suddenly got even worse so I called an ambulance. His sats were 86 so they treated some more and off we went to hospital.

Doc at A&E initially sceptical about the sats readings but after DS2 had not responded to second or third lot of drugs via a nebuliser was thinking about a chest xray and said sats must have been right. Finally about 18 hours after the attack started and six or more nebuliser treatments with oxygen DS2 started breathing more easily.

We have an appointment with the paediatric respiratory specialist team next month and will see how it goes. I developed adult-onset asthma a few years ago so should have seen it all coming when the attacks started but we thought it was croup initially. He is having regular ventolin atm as he has another cold, or maybe it's an asthma-induced cough and hayfever? Not sure, he has a lot of green mucous and nearly lost his voice but seems better now and only a little bit of wheezing.

Anyway, hello, I'll be asking questions as we go along.

Sirzy Mon 14-May-12 21:18:03

Welcome Hothead!

Does he have any preventer medication?

Strange you mention croup, DS has had 2 big asthma attacks which both came on within days of him having serious croup attacks. I am dreading his next croup attack.

hothead this is quite similar to what happened with DD1. Initially she only got asthma when she was ill. Think they called it asymptomatic? Anyway, after several trips to A & E, fortunately a respiratory registrar was on duty and he put her on a program of preventers. She was referred to the asthma nurse and eventually the respiratory consultant (all at Children's Hospital). She is not 5.6 years and it's better. She still gets some quite severe attacks, but at least I know what to do. She's on Singulair, Seretide and ventolin as needed.

Croup I find is more in the throat and at least DD1 sounds like a seal grin when she coughs. If in doubt, I look at her chest when she breathes and observe how hard she is working.

I'm not sure that being the parent of a severely asthmatic child is an exact science, but probably more of an art combined with a bit of guess work.

Oh, and every single time I wasn't sure about her breathing and taken her into A & E no one has ever said to me either I've over reacted or that I've wasted their time. So, if you're not sure, default is to take to A & E. I don't bother with out of hours, mainly because they don't have the facilities, and also our GP said to take her straight to Children's Hospital. But if you have a good out of hours, then great.

HotheadPaisan Mon 14-May-12 21:55:10

No preventers yet, we are monitoring and will talk to them at the appt in a few weeks. I don't think it was ever croup, it was viral-induced asthma from when it started this winter.

We also notice his voice is quite raspby or hoarse-sounding, at his toddler check they mentioned his adenoids might need looking at so we'll ask about that too.

What happens if the nebuliser treatment ever doesn't work? What would they do next?

ATM we're giving him two doses of ventolin every 4-6 hours at the first sign of a cold or any wheezing. He is quite co-operative in return for two smarties smile

Sirzy Mon 14-May-12 21:58:49

Often steroids are given (normally a 3 day course), or in serious cases oxygen is given in order to keep SATs up higher until everything starts working properly.

Our hospital has actually stopped using nebs as much and only use them if the child in on oxygen, they give 10 puffs of ventolin as needed instead. For DS that is much better as he get very distressed with nebs but is fine with inhalers other than at 2am!

HotheadPaisan Mon 14-May-12 22:08:10

Yes, they woke us up all night then freaked me about the possibility of IV fluids at 4am so I had to wake him up to get some fluids into him. He did have prednisolone too. But in an emergency what would be the next step?

His sats were actually 82 I think, he just didn't look right and I felt he needed help more quickly than it would take for us to get to A&E. I wouldn't give it that long again.

Sirzy Mon 14-May-12 22:23:06

Our hospital tends to start oxygen when sats fall below 89, Ds was around that mark when we went in last week but just avoided oxygen thankfully!

I think for it to not respond to Nebs/oxygen/steroids at varying levels is pretty rare and thankfully we haven't been there with Ds (although we have when he had bronchiolitis) but it would be into the intensive care/adrenaline side of things I guess but I really wouldnt worry about that side of things as it is highly unlikely to happen xx

HotheadPaisan Mon 14-May-12 22:28:10

That's what I thought, thanks. I think I read something about adenoids and breathing issues, might be making that up, will have to get it checked though.

cedmonds Tue 15-May-12 19:43:35

Hi
Ds is slowly getting better he has managed to mornings at school and is coming home exhausted. He is still on ventolin every four hours every time we try to reduce it he gets bad again. Have to wait and see what they say on Friday.
Ali don't know were you are but ds hay fever is bad as well at the moment.

Sirzy Tue 15-May-12 19:46:14

Hothead There is some sort of link so well worth you looking in to

Cedmonds glad he is on the mend. We are still needing ventolin 4 hourly here, I tried to spread it out today and we managed 4 hours 15 mins!

alibobins Tue 15-May-12 21:17:33

Cedmonds we are in the Midlands x ds1 has had another bad day and has spent the day on the sofa which is really unusual for him sad
He takes ventolin at least twice a day everyday x

cedmonds Wed 16-May-12 11:38:00

alibobins We are in south east so not the same area. Hope DS is feeling better today
I took DS into school again only for them to say take him home again as they are going for a outing to local gardens and walking there and as ds is unable to do much they couldnt have him in school as there was going to be no one there. So he has been maked down as absent when it is there faultangry

alibobins Wed 16-May-12 12:22:05

That is awful angry Ds1 is currently asleep on the settee sounding like a little old man x

Sirzy Thu 17-May-12 13:31:09

Hope everyone little ones are doing well now!

Ds seems to have finally turned a corner and can now get between 5 and 6 hours between needing ventolin. Hopefully he will be able to get back to nursery on Monday!

had a scare today. went to the school at noon to give DD1 her Ventolin and about an hour later her teacher calls and says she's visibly shaking hmm. Part of her updated care plan is that she can speak to me any time she wants when she's poorly, and she said she felt horrible and wanted to come home. So, I pick her up, call the GP who says bring her in immediately. Get to the GP and her SATS are fine, slight temp, but he thinks the shaking is because of the Ventolin....

She seems OK. Made a request for 'Mom lasagne' so guess she can't be that bad wink

Sirzy Thu 17-May-12 17:14:39

Wanting lasagne is a good sign!

When my sister has a lot of ventolin it makes her shake so it could be down to that.

Sirzy Mon 21-May-12 18:17:14

Well we had a good day yesterday. Woke up today and it seems with sunshine comes hayfever sad just about managed a morning in nursery but is back to needing 5 puffs 4 hourly again! Damn you hayfever!

alibobins Tue 22-May-12 19:53:16

Ds1 is doing much better but ds2 is suffering now angry fed up face sad
Sirzy how is ds now?

Sirzy Tue 22-May-12 20:09:45

I'm not surprised your fed up, I find it tough enough with one to worry about.

He is plodding on. Still only going 4 - 5 hours and needing 5 puffs at a time but as long as he keeps to the 4 hours that will do for now!

alibobins Tue 22-May-12 22:19:34

Ds2 is asleep finally next to me think it's been a combination of heat germs and the fact he's got huge tonsils sad not hoping for a good night and have got my bag packed just incase sad

Sirzy Tue 22-May-12 22:44:31

Hope you get some sleep Ali x

Sirzy Wed 23-May-12 20:44:45

How is your ds doing Ali?

alibobins Wed 23-May-12 21:48:27

Not well at all sad just waiting for a bed on the ward sad will update later

Sirzy Thu 24-May-12 13:47:09

Ali how are things?

Joining in this thread, my 7 year old son Alex was admitted to hdu twice last year and spent just over 2 weeks there due to asthma attacks. He had never had asthma previous to this.

His asthma is definitely weather related but seems to be worse on the summer months particularly when the weather is cold one day and hot the next.

The last 2 days he has been particularly bad, sometimes having up to 10 puffs on his inhaler and yesterday we was up the gp's on a nebuliser.

Back on the prednisone now so hopefully that will help. For a couple of days at least.

Bit of a step backwards because at the last consultant appointment they wanted to wean him off his brown inhaler for the summer months but I don't think that is going to happen now.

alibobins Thu 24-May-12 19:38:28

Ds is still not well on oxygen and hourly nebs sad

Sirzy Thu 24-May-12 19:44:07

Welcome jackjack sounds like your son has really been through it poor thing. Hope the pred works and he is feeling better soon.

Oh no ali poor thing, hope he starts picking up soon.

jack sorry about your son sad but would it be worth you querying whether he is on the right medication when you next see the consultant? Clenil had almost zero effect on DD1 (5) and she's now on Seretide 125 which seems to be working, or at least her asthma attacks are not as severe nor as frequent as they were. She is also on Singulair (chewable 4mg).

Ali sad so sorry. Are they going to do an x ray? It's difficult sometimes to pin point asthma and a chest infection. Hope he feels better soon and has a good night....

alibobins Thu 24-May-12 21:29:43

They have ordered a chest X-ray tonight on the ward rounds he has had a canula put in incase he gets worse
He did have a more settled period this afternoon so they just thought an attack caused by hayfever bit now he's gone downhill so the doctor wants more investigations sadsad

cedmonds Thu 24-May-12 21:53:19

Hope he is better soon ali. Ds was in hospital last week and some of this week. He is on 4 hourly ventolin.

Hi all, DS2, 17mo, was diagnosed with possible childhood asthma today. He has ventolin and a spacer. He's on 2 puffs 2-4 times a day to see how he fares. He's had 2 puffs so far and his chest is already so much better.

He's breaking his heart over taking it, but the difference is immense! I am sooooo relieved!

Ali I hope your DS get's well very soon and cedmonds your Son too.

alibobins Thu 24-May-12 22:06:17

Cedmonds sorry your ds was in again hope he is better this time x x
Ds is finally nodded off but don't know how long for as he is due another neb at 10.30 and still waiting for X-ray

Sirzy Thu 24-May-12 22:16:19

Oh no so many poorly little ones again sad

Ali, I find that one of the most frustrating things in hopsital. Everytime they settle it's time for something else!

alibobins Fri 25-May-12 06:22:01

Ds had a more settled night in terms of breathing his xray showed general cloudy and patchy areas so they started him on antibiotics so hopefully we will begin to see improvement x the ward is full and the nurses have said that the heat can be as bad as winter for some little ones sad

Sirzy Fri 25-May-12 07:02:52

Glad he had a better night Ali, hope the antibiotics kick in soon and you can get back home x

alibobins Fri 25-May-12 17:58:46

How come every doctor wants your complete life story and each say different angry luckily for us ds consultant put him straight x x plan if action now is to wean ds off the nebs and oxygen if he can manage without both only on 10 puffs of ventolin then we will prob be home Sunday at the moment he is on a waft of oxygen and 2-3 hourly nebs so slowly improving smile hope others get to enjoy the sunshine it will probably rain Sunday lol x x

Sirzy Fri 25-May-12 18:46:47

Giving the history over and over annoys me to, luckily our last 2 admissions we have had the same great dr so managed to avoid doing so. I do love it when they start of in a and e questioning the fact he has asthma until you start giving the history!

Glad he is on the mend. Hopefully he can enjoy the sunshine next week!

Ds managed a play on the beach today which is a good sign smile silly mummy decided it might be time to lower his ventolin though which led to a small attack but back on 5 puffs 4 hourly and he is coping again! X

Ali so sorry. When DD1 has to go via A & E, I always say that she is under [name drop respiratory consultant] and say, 'do you want to call him or one of his team, or shall I?' the last time she was admitted and blue lighted to Children's Hospital, her consultant did come down to A & E. But there have been occasions when one of his team will be bleeped and the A & E docs will discuss her care plan. Most of the time, acute treatment will be fairly standard and the respiratory team will agree, sometimes they come down to A & E to review and sometimes they chuck her onto the respiratory ward for observation. The main thing though is to have a care plan and a consultant who is overall responsible so you don't have to repeat the symptoms etc.

alibobins Sun 27-May-12 18:10:07

Looks like we are staying in tonightsad ds is up and down he has been off the oxygen most of the day but is still needing it when asleep so they want to monitor him tonight x he is off IV antibiotics and on oral clarithromycin so everything is going on the right direction x x

Sirzy Sun 27-May-12 20:34:15

Hope he gets home soon Ali, fingers crossed for an oxygen free night.

How is everyone elses los coping with the heat?

Community paediatric nurse came
Out yesterday to run through a care plan with us. (totally brilliant service, cannot stress this enough).

Said to not be overly cautious at his stage and it's trial and error at first. I had it in my head last week early on that pollen was bothering him and our nurse said it probably was so not I be afraid to give him a few puffs. He's been so much better this weekend! We've been outside almost entirely! gringringrin

She gave us some great tips for getting him used to his spacer too, including letting ds1 play with it and encourage ds2 to do the same and count To ten I between puffs. This afternoon and evening were a breeze!

Hope all your little ones are doing ok or are on their way home very soon.

Speaking of outside play a very nice lady on free cycle gave us some outdoor toys but as we arrived to collect them her husband was taken ill and has had to be admitted. So please could you Send him get well vibes too.

Sirzy Sun 27-May-12 20:53:31

That great the nurse came to see you at home!!

Glad he is coping well, I think getting the inhaler technique sorted and more importantly getting them happy taking it makes everything so much easier. DS loves playing with his spacer and happily gives all his toys inhalers!

DS is doing ok, struggling with hayfever a bit although the loritadine is making a big difference. Still against any efforts to reduce his ventolin so I am leaving it now until after the bank holiday weekend as we are away and would rather keep him at the level he is now than risk making him worse rushing him off the extras. Only 2 months til we see his specialist!

The community team service is fantastic! It makes an enormous difference to the health of children in the area I'm sure.

Sirzy Sun 27-May-12 21:06:57

I wish we had something like that to access. Our care from the hospital is outstanding but quite often you feel daft going to them but have nowhere else to turn.

I am lucky i have two friends who are paediatric nurses who must get fed up of me bombarding them with questions and asking for advice!

Sirzy Mon 28-May-12 17:00:50

Ds is really struggling today sad managing about 3 and a half hours before needing ventolin. Hoping he doesn't get any worse over night.

Ali - have you managed to get home yet?

alibobins Tue 29-May-12 10:15:42

Sirzy hope your ds is okay sad
We were discharged last night in the end they stopped the constant monitoring and said they would go on how he looked and his breathing x
He had an okay night I just kept hearing alarms in my sleep sad
He's got the antibiotics for another 10 days then a follow up appointment x
I was really shocked we were in so long at one point they were considering moving him to hdu it was a scary few days he didn't move or fight the medication sad he is now very clingy but I don't mind lots of cuddles x

Sirzy Tue 29-May-12 10:24:30

Poor thing, hope he has a speedy recovery x

Ds is ok, still not right but not bad enough to need to do anything yet.

Sirzy Tue 29-May-12 20:03:15

Another afternoon in a and e, another chest x ray shows his pnumonia still hasn't cleared so on new antibiotics. Thankfully he is maintaining is sats well so hasn't had to be admitted touch wood this one works.

alibobins Tue 29-May-12 21:58:17

sad which antibiotics they given now x poor little man x x ds2's discharge says pneumonia x his sats are hovering around the 92 mark tonight I've phoned the ward and they are happy as long as he doesn't drop below 90 they are happy for him to stay at home x

Sirzy Tue 29-May-12 22:02:07

fingers crossed they stay up.

He is on erythromycin (sp) this time

alibobins Wed 30-May-12 07:26:46

Not too bad a night and ds wanted breakfast at 6 this morning so that's always a good sign x x
Sirzy if that doesn't clear it ask for clarithromycin ds only takes it twice a day and seems to work well he had it for 12 weeks when he had whooping cough x x

Sirzy Wed 30-May-12 07:33:26

Thanks Ali. He spiked some high temps last night considering his temp is normally low but seems cooler this morning. He is still asleep but that's no shock as it was 2am before he settled.

Glad your Ds is wanting food and seeming better

Sirzy Wed 30-May-12 13:12:37

Blooming gp. When I put his repeat in I asked for 2 ventolin inhalers rather than one (we are getting through one every week - 10 days)

Apparently this was a big ask. After 48 hours they hadn't managed to do the script, went back and had to sit and wait for it to be signed. Then got told we have to see the practice asthma nurse before having any more - I tried to enquire why as he is under consultant care but nobody could answer! What a waste of time that appointment will be!

alibobins Wed 30-May-12 17:25:27

Grrrrr I've just had the same issue but with ds1's antihistamine he's having extra doses due to allergic reactions and pollen so I ask for two bottles I may of well asked for a million pound lol now sat in the go's waiting room just to get a bloody prescription x x
Hope ds stays well x x

Sirzy Wed 30-May-12 18:43:44

Daft isn't it Ali, I did remind them it was only ventolin not methadone I wanted!

Ds has been admitted this afternoon, can't get his temp below 39 with max dose Paracetamol. Just waiting to have bloods done and looking likely he will end up with ivs.

alibobins Wed 30-May-12 20:23:03

sadsad so sorry to read that x x let me know how u get on x x

Sirzy Wed 30-May-12 20:38:56

Thanks Ali. He is fast asleep for now so I'm pigging out on Haribo watching crap on tv!

alibobins Wed 30-May-12 21:51:31

Mmmmm I've just pigged out on a dairy milk smile if it's like my children's ward the tv and lights go out at 9 so u have no choice but to go to sleep lol here's hoping for a well night x x

Sirzy Wed 30-May-12 22:00:23

We have tv 24/7 but have to use headphones from 10pm. Just waiting for them to do his bloods and then will be attempting to sleep.

alibobins Thu 31-May-12 11:46:44

How's ds this morning Sirzy? X

Sirzy Thu 31-May-12 15:34:55

Chest wise he is doing well. But he has a sore throat to so getting him drink in a pain. Using difflam and a syringe at the moment!

alibobins Thu 31-May-12 16:35:51

Are u still on the ward? X x we are going away this weekend so hopefully we will stay away from the hospital x x taking the nebuliser and emergency pred so I'm well prepared x x

Sirzy Thu 31-May-12 19:44:56

He is home now smile got to go back in 2 weeks for repeat bloods.

Have fun Ali, we are meant to be going away in the morning for the weekend. Will have to wait and see how DS is but the doctors seemed happy for us to take him and we have details for the local hospital just in case!

alibobins Thu 31-May-12 21:48:37

Glad u are home x x Hope u have a fab weekend too x x Hopefully we will get some sun x

Sirzy you know you can register DS at the GP surgery where you go on holiday? Of course you can also go to the hospital and use the GP surgery on an emergency basis, but our GP suggested we do this when we went on holiday to Cornwall. It was really useful when I wasn't sure whether to take DD1 to hospital as I just wanted someone to listen to her chest.

alibobins Fri 01-Jun-12 21:14:43

We've made it away ds2 is spending alot of time in his pushchair if he walks for more than 5 mins he is coughing and wheezing but he is enjoying just being out of the house x x

Sirzy Mon 04-Jun-12 15:47:57

Thanks Ilove - we ended up at the OOH as DS had an allergic reaction to the antibiotics.

DS was the same Ali, but still managed to have a lovely time! x

alibobins Tue 05-Jun-12 21:51:27

Ds2 is back in hospital with suspected meningitis sadsadsadsad

Ali Oh no! sad Hope you are OK

Sirzy Wed 06-Jun-12 17:17:21

Oh no Ali. Let us know how he gets on x

alibobins Wed 06-Jun-12 21:29:28

Thankfully not meningitis but a bacterial infection that they can't identify sad he hasn't woke up since Sunday and won't eat or drink so is on a drip and on broad spectrum antibiotics x x

Sirzy Wed 06-Jun-12 21:35:31

Poor thing sad

How is his chest coping with it all?

And how are you coping? xx

alibobins Thu 07-Jun-12 06:39:05

Sirzy surprisingly well x so at least that's one good thing x sats are around 95 x x he's had a restless night last night sad x x

Sirzy Thu 07-Jun-12 19:56:12

Hope he is doing better today Ali xx

DS went back to nursery again today and managed pretty well although was knackered tonight and has been asleep since 6.

How is everyone else getting on at the moment?

ali great it's not meningitis. Have they been able to give a diagnosis?

sirzy DD1 has been so exhausted this half term which can be a symptom of asthma. Oh I don't know, she's still 5 and in Year 1, and I noticed at the Class Assembly last week how much thinner she seems compared to others. She's on the 75th percentile for height but 25th for weight despite eating like a horse, so I do worry about her stamina. She sees the respiratory consultant in the next few weeks and hopefully will get her medication reviewed. I haven't been able to reduce her Seretide, but he tends to think of 'under control' as only a few visits to A & E hmm.

Sirzy Thu 07-Jun-12 20:24:20

DS tends to be full of energy in bursts of about 5 minutes then have to sit himself down, he is only 2.5 but has already learnt when he needs to stop sad

The hospital are starting to monitor his weight, especially as he has lost quite a bit while ill and has always been a titch anyway!

Hope you get your DDs meds sorted to something that works for her!

alibobins Thu 07-Jun-12 20:56:05

Still unwell he is refusing fluids and
hasn't eaten since Sunday sad he has got a serious water infection so changed his antibiotics to one I can't spell x all they need is for him to drink and we will be aloud home x x

Sirzy Thu 07-Jun-12 21:01:47

At least they know what it is now.

DS was the same with the drinking last week, the nurses commented how it was like a drinks shop with all the different bottles I had around the place of anything I thought may tempt him to drink. Only got to bring him home on the promise we would syringe fluid into him if he wouldn't drink, as soon as we got home the little sod he started asking for juice. I am sure he just wanted to stay and play! x

alibobins Fri 08-Jun-12 10:19:06

Well ds pulled the drip at 5 this morning so it's up to him now to drink x he's got to take 600ml throughout the day x he is showing some improvement as he has been fighting the syringe and meds x x

Sirzy Fri 08-Jun-12 11:00:56

Fingers crossed he can be persuaded to drink!

Sirzy Fri 08-Jun-12 20:04:02

How has the drinking gone? x

alibobins Fri 08-Jun-12 20:08:50

It was going okay until around 2 then he vomited everything back up sad He has now got an ng tube in as they don't want him to rely on the drip x x don't know how long it will stay in for as he really doesn't like it x