Worried Parent

Hi All

You may have to excuse me but I am am a newbie and its my first post.

We have 4 children one of which has asthma ( was diagnosed at 4 ish) he is 10.

We have been told he has non allergic difficult asthma. He has been in and out of hospital a lot. This episode had lasted 8 weeks now. He had another attack today and is in hospital tonight. His asthma is a tricky one we cannot locate a trigger or triggers. It just seems to be everything starts him off. He goes downhill very fast. When he is well he is 100% no wheeze with 99% oxogen levels.

His current list of meds is

Slophyllin

Montelukast

omeprazole

flutiform

predisolane

salbutomal (when needed)

Atravent and ventaline for his nebuliser at home.

Magnesium sulphate (via a drip when needed)

My worry is am I doing enough as a parent to get him the correct treatment or diagnosis. He is under a consultant at our hospital who has been great. He has given us a red card so we can access the ward at any time when Owen is unwell. But it depends on what doctor we get to see. Some doctors say hes fine give him a neb and when they check on him an hour later they realise he has gone down hill fast and needs another neb. Hi consultant has given him test which we are waiting for the results of. When they come back he is being referred to the Brompton hospital in London for more tests. Is this enough or I am expecting too much (ie for someone to give us a magic tablet that will cure him).

My main concern is that from what I have been reading he falls in the category of the 5% with the most severe asthma and its those 5% which make up 90% of the 4 deaths a day from asthma. I don't want to be saying could I have done more to prevent the worst.

Any advice would be greatly appreciated.

Neil

4 Replies

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  • My son is only 4 so have a lot less experience. I would say a referral to the royal brompton is very positive. From what I have heard they are amazing! I don't know if you are on facebook (or if I am allowed to advise this) but there is a group called Children with Brittle Asthma and Chronic illness and there are some brilliant parents on there who have given me a lot of advice and support through some difficult times.

  • I really feel your anguish and worry. I've felt the same way about my daughter the last few years..it's a horrid 'out of control' feeling - something a parent should never feel about their child. (She's severe brittle, aged 5!)

    I don't think you can ever expect too much when it comes to the health and well being for your child so I think your doing a great job. I too dream of a magic treatment that will mend everything and give my daughter the quality of life she deserves. You are responding to your sons needs and getting him the best treatment possible. The Brompton is great and am sure will give you all the information and support you need.

    I too have the same concerns regarding Asthma tragedies as you do.. The way I've learnt to deal with it is by not trying to think of the statistics too much but concentrating on all I can do to help my little one (as you are doing too). Also I try and put my energy into educating those around my daughter so I know that she's as well cared for as possible when not with me.

    It's the toughest, most emotional job in the world but it sounds like you are doing great. We are hear if you need. Let us know how things are. X

  • Hi i have asthma and mine started getting worse at secondry school i have been verry poorly with and been admited into hospital meany times even icu they found that when i had an attack my phopholin levels whent down and i had to get tabblets for them i also went down hill so quick i would see if they have cheaked theae levuls and if not could they i am 21 now and doing raily well so i hope you child gets better p.s i dont know if i have spelt phopholin right ive just spelt it how it sounds x

  • Hey I'm a newbie too and just reading your situation and some things have rang a bell,i have a son who is 10 nearly 11 and he has been suffering now since he was 10months old , like your son he has been put in the same range and I have been constantly banging my head against the brick wall as far as the hospitals are concerned,when you hear the words there is nothing more we can do,he is on the same dosage as an adult and it still not working is hard to take in, I was wondering if they have done allergy testing on your son?

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