Worried grandma

Hi all. I have just heard that my 4 year old granddaughter, Aimee. is back in hospital - this time with suspected pneumonia. She was perfectly healthy until June of this year, when she was hospitalised with a chest infection. Since then, she has been in hospital 7 times with breathing problems, the last time was just 2 weeks ago, when she was taken in by ambulance. I don't know all the meds she is on - although after every hospilisation, she seems to be given extra meds - the latest is montelukast. What I want to know, is how difficult it is to get children on the right medication to stablise their condition and prevent so many hospital stays? Is it trial and error and if so, how many more trips to hospital are there likely to be? I'm probably asking questions that no one has the answers to - but thought I'd give it a shot. My daughter has been told that Aimee is too young for allergy tests, but my thinking is that the trigger is more likely to be viral, anyway, as it seems to come on whenever she has a snuffle and escalates very quickly from there. Would there be any benefit in getting her a private consultaion with a respiratory consultant/ paediatrician? Any advice for a distraught grandma would be very welcome!!

[Thomass_mum]

Hi

My son is 2yrs 9mths old and also back in hospital. He was diagnosed with asthma in August this year, something we had suspected for a long time but had a tough time getting a diagnosis because of his age. He has a suspected lower respitory infection this time. My son is on a number of medications (Seretide, Nedocromil, flixonase, montelukast and his ventolin) but we have been warned that with him it may be the case that if he picks up viruses no matter how many medications he is on it will not always prevent him having to be hospitalised. We were quite positive previous to the past couple of days as for the last 3-4 weeks for the first time in ages we hadn't been having to give the blue inhaler every day.

He was due to have his allergy testing tomorrow but as he's ill he won't be able to have that now. I don't think he has allergies but they want to do it to rule it out, I believe his isomer virus linked too.

Is she under a consultant at the hospital? My son is under a specialist Respiratory and Allergy Consultant who is brilliant. If she isn't under one could you not ask the GP to refer her?

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HI Jenny - hope your son is back home again soon - it is such a roller coaster ride and so exhausting isn't it? I cannot believe how quickly they deteriorate and end up in hospital. I will ask my daughter about the consultant. I'm sure that the number of times Aimee has been in, she must be under one - do they have specialist respiratory paediatricians, or is it a respiratory consultant who deals with adults and children? As a grandma, I feel so helpless - I don't want to ask too many questions, particularly when Aimee is in hospital, as I know my daughter has enough on her plate without me giving her the 3rd degree! She had asthma herself when she was little, but was only hospitalised once and it was controlled by ventolin when she had a cold. It was never as bad as this and she grew out of it by the time she was at secondary school.

[Thomass_mum]

I guess it depends on the hospital whether they have a specialist consultant. Thomas's consultant I think classes as a paediatric consultant but he specialises in allergy and respiratory disorders. The clinic Thomas attends is the Respiratory Clinic so they also have a specialist respiratory nurse who you tend to see each time as well. I am really pleased with the hospital they have been brilliant all round. Before July Thomas hasn't been admitted since January and wasn't even taking a preventative inhaler as they thought it was just during the winter he was affected. It's been quite a scary 5 months for us. Luckily, Thomas's consultant is on ward rounds so will get to see him in the morning I already have so many questions. It is worrying the amount of meds he takes the amount of steroids he has ha in the past 5 months is worrying. This is his 8th lot of steroids, each course has mostly been 5 days, then there's his steroid inhalers and nasal sprays. He hasn't grown much and I am concerned it could be because of all the steroids.

My son hasn't slept through the night in almost two years now, not just because of the asthma he has adenoid problems as well so I constantly feel shattered. I can imagine how your daughter must feel. Does she have other children? I have a 7 year old daughter and I know she gets upset by me being in hospital because she misses me and is worried about her brother.

I have asthma as well but mine didn't start until I was about 11 and never grew out of it but mine is nothing like this. Strangely the only time I have ever been hospitalised was when I was pregnant with my son and it happened 3 times. I have been fine since and rarely use an inhaler.

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Hope Thomas is doing OK. Aimee went home this afternoon - thankfully it wasn't pneumonia - this time she has antibiotics as well as the steroids, inhalers, etc etc. It was only a short stay this time (24hours) and her SATS were better when she went home this time, than last time she went home, so fingers crossed again! She has an appointment with the consultant on 29th January, but Vicki is going to ring up to see if that can be brought forward, seeing as Aimee has been in hospital twice since that appointment was made. She thinks it is a general paediatrician. We can only take one day at a time and hopes she makes it through Christmas, without further drama! I really don't know how you manage with another child as well - the knock on effect on the whole family is horrible. Aimee is an only child, so at least that's one extra worry that Vicki doesn't have. Do you give Thomas any extra vitamins / supplements to try to boost his immune system?

[Thomass_mum]

How funny is that Thomas's next consultant appointment is on 29th January too, we have allergy testing now on 9th January as he couldn't have it today. He is currently seen every 4-8 weeks as his asthma has been so uncontrolled

We are home now turned out Thomas also has a lower respiratory infection so we left hospital with antibiotics and steroids. Thomas always has 5 day course as found in the past the 3 day courses weren't long enough and he would get ill again soon after stopping them. I am also pleased they are doing a 10 day course of antibiotics at least it should get us past Christmas.

We do find dealing and coping with Thomas's asthma hard but we have a lot of worry about my sister as well as she has a serious liver condition which will require a transplant at some point. Most of the time I just try to be as positive as possible and remind myself how lucky we are with modern medicines, I take each day at a time.

I asked today about an emergency plan for my GP or having prednisolone at home to try avoid having hospital admissions. The consultant isn't happy to do either because Thomas gets ill so quickly he needs to be seen in hospital whenever he is wheezy and the blue inhaler (10 puffs every 4 hours) isnt making a difference. His last admission despite being on nebs he got worse and he ended up in HDU on IV salbutamol.

The consultant and my GP doesn't think the vitamins will make any difference but the dietician wanted me to try Thomas on them but tbh haven't had a chance to get them yet with him being unwell. Thomas also has been given fortini (supplement drink) by the dietician for when he's unwell and he won't eat.

Do you know what inhalers she has?

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Glad to hear Thomas is home again too. Aimee has 5 days of antibiotics. I don't know the name of the inhalers, but she is on brown, green & blue. She has been told to increase the green one from 1 to 2 puffs.

You do have a lot on your plate, with your sister as well. Reading these forums is quite an eye opener in seeing what other people have to put up with. At least I am confident that the GP & the hospital are taking Aimee's condition seriously and although it is frightening everytime she has an attack, she is in the right place when she is in hospital. Just wish they could get it controlled - but it sounds as if it may be a while before that happens!

[Thomass_mum]

I have come to the acceptance that although on a normal day to day Thomas is getting there with being controlled we will never avoid the admissions because of cold and viruses. His body just doesn't seem to be able to cope with them at all. The turning point for Thomas has been since he was put on a yellow inhaler called Nedocromil and a nasal spray called flixonase. Before that he was on his purple inhaler and montelukast but still struggling and requiring his blue inhaler most days. Asthma is a very scary condition and sadly a lot of people don't realise how serious it can be a lot of people seem shocked when I tell them how often I am in hospital with Thomas. I think they must just assume with asthma you get a bit breathless take an inhaler and its all ok.

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I'm afraid I used to be one of the guilty ones, who thought a puff of an inhaler sorted it out - I know better now - it looks as if Aimee still has a few inhalers to try yet - don't think she has had yellow or purple yet! She has been on montelukast for the last two weeks.

[Thomass_mum]

It may be that the inhalers and montelukast just need longer to build up, Thomas has been on his latest lot of meds just over 4 weeks and we were told that medications can take weeks to build up to their maximum strength. There is plenty they can try I think you are right it is mostly a case of trial and error we have been trying since July to get it right.