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!)

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?

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?

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.

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

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.....

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.

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

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!

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

How is he now?

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!

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 :) 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 asthma). 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!

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 :( 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

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 I know it probably feels like a long night ahead.

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

Ali hope you manage to avoid hopsital

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.

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.

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!

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.

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!

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!

ps DS started his brown one at 10mo.

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.....

Hi :)
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' :o- I'm only really worrying because it still happened even after she used her inhaler. It's a purple round one a technical term, I believe. At what point do you start worrying (more than usual) and take them to the doctor?

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