Wheezing into 2013 - Support thread for parents of asthmatics

[Sirzy]

As the old thread is filling up I thought I would get a new one started!

This thread is for anyone with a child with asthma, or asthma type symptoms. Between us we have to much experience of inhalers, nebulisers, steroids, sats and all things asthma!

Can I join you all...currently lying on some sort of camp bed next to my 17 month old who was admitted last night as his wheeze and breathing was so bad - in December he had two days In with chest infection and struggling breathing but this is the first time the wheeze has nt gone after the nebuliser - can anyone tell me what the next step is? He has has the nebuliser every 2 hrs since 8pm throughout the night - but still wheezy they are doing hourly obs and know he is asleep his sats are not to bad at 95 - anyway rambling after being awake all night and wondering how they can get his breathing to calm, he is having to work so hard -

Has he has any steroids?

Sometimes it's just a waiting game for everything to work

They have been giving him steroids as well now on 1hrly nebuliser - so stressful we are staying in tonight they have said -

hope he starts improving soon

Dora hope he gets better soon

Thank you he had a really bad turn today it was very worrying seeing consultants worried and telling me how worried they were - but after a few hours he has stabilised - he has had IV salbutamol and steroids so hopefully he will pick up tomorrow -

dora so sorry. We've had some really scary episodes with DD1 (6) who deteriorates rapidly to such an extent that her GP is scared.

Hopefully your DS is being treated by respiratory consultants? DD1 used to get blue lighted to Children's Hospital quite a bit, and found that A & E docs and also ward doctors would treat asthma on an acute basis quite competently, but a few times I have asked for her respiratory consultant to be bleeped. For the most part the acute treatment is fairly standard, but there is nothing as scary as watching your child struggling to breathe...

Hope you get some sleep tonight. Presumably he's on an O2 monitor? The nurses can set it so an alarm goes off at a specific percentage. Think for DD1, it was set at 90%. It made a difference so I could get some sleep knowing she was being monitored. Not that you will be able to, I know, but a few hours will make a difference...

Glad he has stabilised, hopefully he carries on recovering. When it comes to time to be discharged i would insist on consultant follow up and if he isn't already on preventative medication ask about that.

DS has been playing in the snow today for the first time and was fine at the time (topped up on ventolin before he went out) but then has struggled a bit this afternoon.

Thank you for your replies he is on full monitor and is beeping at 90 and then they are given oxygen - they are given 1hrly nebuliser as he is not lasting longer at the moment - he is also on antibiotics and IV steroids - he is at last falling to sleep but I think it will be another long night with 1hrly wake ups!

Hope he had a settled night Dora.
Ds2 has started with a high temp and cough
Ced we've had an appointment come through for next Tuesday from GOSH to discuss ds1s results are they usually this quick or should I be panicking something has been found

How is he doing Dora?

DS is the same Ali, and a clingon who won't get off my knee either.

Dear All,

I feel a bit bad to come into this thread so late, but I sympathise with all of you and share your worries and experiences. Will tell you a little bit about my child. He has had 5 severe food allergies since 7 months (eggs, peanuts, tree-nuts, sesame, chickpeas) he is now 2 years old (Birthday yesterday).

We were fine and thought all in control of his food allergies (after two visits to A & E)until last August when we had a terrible night of throwing up, cough, etc. My husband and I did not realise or knew what "wheezing" meant but found out pretty quicliy the following morning. Ended up in Hospital with intravenal Saubutamol and Prednisilone. This was with an overnight stay. After that the rollercoster started, Doctors, Hospitalizations (5 in total) luckily only with oral inhalers but he has had 4 courses of Prednisilone in five months, huge amounts of Ventolin. We did try Singulair twice but he really became like a possesed child, we even came back earlier from our holidays thnking he had psicological problems. It was that bad and his behaviour scary and erratic.

Now his pediatritian has finally decided enough is enough and has put him on Qvar Beclomethasone 200 morning and 200 night until February 17th. He said to try this for four months (we started last October). Even though I am ecstatic that we have been out of Hospital for one and a half month, I cant really understand what a high dose means/ I do believe that his dose is not low and dont know who to ask. Does anyone know? I dont want him to wheeze and I panic every with every single cough yet but I dont want him to be on a horse dose without me even knowing.

Also, for those who are loosing hope I have tried a trusted homeopath and although I am a sceptic person by nature, it has helped a lot! He has told me that part of his attacks are clinical part emotional and was given one dose only of 10 drops of a homeopathic plant at night (will write the name down soon) and since then we have been good. So even though I dont believe in miracles I do know believe in combining homeopathy with traditional medicine.

Thank you and sorry for my long post, keep tight all out there and I hope that all these beutiful babies and children will grow out of it since this is what I have been told.

Hi ego. You may find that they have started on a high dose to get him under control and then will try to lower it down? I know when DS was on Beclomethasone the lower doses did nothing for him and it was only when he was up to 400mg a day it made a slight difference.

Quick update; He was moved out of high dependency late last night and overnight although he needed oxygen he managed to stretch to 3hrs between the nebuliser and has continued to go 3hrly today - so hopefully on the mend now -

Thats good :) x

Hi DS1 had been diagnosed with asthma - coughing all night regularly and poor behaviour (lack of sleep) wheezy ,dark rings under eyes, reccurant throat infections. I just wasnt convinced is was asthma anyway it turned out to be dust mite allergy leading to asthmatic symtoms. Bought a dust mite repeller - 9.99 from amzon and he hasnt had cough for a whole year, no throat infections etc . DS2 19m old has had 5 cases at least of bronchiolitis since 6 months old and croup. Again he has a dustmite repeller and he hasnt had case of bronchiolitis since NOv 12 which is a long time for him. DS1 conf with blood test dustmite aleergic DS2 currently being tested.

But wondered if this may help others- something else to try for asthma type symptoms

Hi
alli i dont know as ds has only had tests done that have taken a while to be run. Hope you get some answers soon.
Ds has been out in the snow today and been nearly a normal child the antibiotics have made so much difference to him.

Hi Sirzy, thanks for that.How long was your DS on 400 a day of Beclomethasone?
He is now good for a month and a half he still coughs a bit in the morning and night but I have not used other than the brown inhaler, no ventolin.I think I have been traumatised by the last 5 months, every night I keep going to his room and checking for any throat recession.WHen he is awake he even opens his pijama slightly and smiles for me to have a look( and he is only 24 months)The homeopath said that I need to calm down to help him and
it is true that as soon as I get into a state he does get worse.So to all mothers out there, we need to stay calm.I know how difficultit is but it does make a difference and they do feel everything.
He was seen by a resoiratory expert and now we have an appointment with the ENT specialist.It seems that they want to look at his airways with anesthesia.I am worried to put him through this after all the ordeals in the past months.
Has anyone had this procedure done, do you think it is worth it?
I have been told that even if he has floppy airways, there is nothing to be done but wait till they grow!

It is so stressful knowing how to be the best advocate for our children - and so many consultants/doctors seem to have different opinions which does nt help -

I can't scroll down as on my phone to check who suggested I ask for a consultant follow up and today I mentioned that as this is 5th (I think) hospital trip but 1st admission and he has been on inhalers since last winter if we could have a follow up appointment and she said he does nt need one as they won't confirm asthma at this stage - i said this was his 5th time for antibiotics (he is 17months) and they said they worry when he has 1 a month or 10 to 12 a year, so no appointment but at least I asked-

Yummy mummy that is so interesting about the dustmites my son has tested positive for dustmites allergy at the hospital after being screened as is cows milk allergic - would you be able to tell me the make of the dust mite extractor as for £10 I will try anything -

Glad I found this thread - hope everyone has a restful night and gets answers soon - sorry I can't offer much advice...

I think DS was on that dose for about 12 months but he also took singliar for most of that time and the last 3 months was also on serevent. He was then moved to seretide which has been the best for him so far although still not perfect.

I am awful for checking on him even now, at the moment he is ill which makes it even worse. Thankfully he is getting very good and knowing when he needs inhaler or whatever which does help.

Dora - even if they won't confirm asthma that doesn't mean that they cant treat his symptoms what they are doing now isn't keeping him out of hospital so they should find something that is. Keep pushing for a second opinion. DS was diagnosed at 12 months,

Dh ended up sleeping in ds2's bed as he was coughing all night :( he does seem a bit better this morning but no snow play for us today.
Dora hope ds is still getting better I can't believe they won't refer him to a consultant!!!

Non for us either Ali, peeling him off my knee is hard enough!

Dora - hope he is on the mend

dora absolute garbage! Yes, the frequency is a factor, but you really should insist on a respiratory consultant out patient appointment due to the severity of the attacks. You also want to ensure that there is no lasting damage on his lungs, therefore he should be monitored.

There are no hard and fast rules about when a consultant is deemed necessary, although there may be local guidelines.

In any case, is the suggestion that your DS was so poorly that he was in high dependency, but no follow up? . That just doesn't make sense. I would speak with a consultant directly and say you are concerned that there is no continuity of care and would like your DS to be followed up in out patients in about a week. Also ask for open access direct to the ward, so god forbid he declines, you can go straight back to the ward.

Thank you for the wisdom - we have come home now as he is managing 4hrs in between needing the inhaler - no follow up appointment given but we do have open access - I'm going to go the gp to discuss it all and ask for a referral -
Thanks again -

glad he is home