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

[Knackeredmother]

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!)

[Sirzy]

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]

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.

[Chrysanthemum5]

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]

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

[Knackeredmother]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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.

[ilovemydogandMrObama]

It was all going so well, until yesterday

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...'

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]

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]

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]

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]

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]

Hi everyone
Ds has now got a cold[hsad] 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 lower[hhmm]. 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]

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]

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]

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]

Oops - can anyone advise / give me their opinion.

Thanks and best wishes to everyone for winter