Brittle Asthma

Hi my daughter is 6 and has what they describe as brittle asthma.She is admitted to hospital every 4-6 weeks and usually requires a few days in ITU then followed by a week on the normal ward before coming home.Just recently the build up to an attack has been much worse being more lengthy and Chloe getting more distressed, she always complains of feeling sick ( possibly from all the coughing and her tummy muscles working harder), she also has a really itchy neck and chin (does anyone else experience this ? )which aggravates her even more and then usual symptoms of wheezing and coughing.We have recently been refered to Great Ormond Street and the drs have been talking about Sub cuts and infusion pumps does anyone know what these involve.We are going to GOS in a few weeks to discuss all these but any information would be greatly appreciated. Our own hospital are not very helpful at all I've got more information from people on here . Thanks Nikki xx

[KateMoss]

Hello Nikki,

sorry your daughter is having a rough time at the mo.

There are a couple of other younger people here who have brittle asthma & s/c infusions.

I am brittle and use s/c some of the time. If you do a search on this message board or look back through the medical section there are a few threads on it, some started by me!

Anyway, s/c is a continuous subcutaneous infusion of usually Bricanyl and occasionally ventolin via a syringe driver ( very small pump, bit smaller than a video casette in size). It pumps every few minutes 24/7 so maintains a certain level of the drug in the system all the time. The drug is in a 10 or 20 ml syringe, attached to tubing ( very thin) which is attached to a needle which is inserted into the subcutaneous layer of skin. You will be taught how to do this. there are various needles - the best ones are a bit like venflons where the metal needle is withdrawn leaving plastic tube in place - more comfy.

I get an itchy feeling too when having a bad attack.... feeling sick... usually down to the ambulance driving! ( very fast on blues & twos!) Coughing doesn't help either.

I hope this helps a bit .... there are some other 'Mums' out there who may be able to advise more as I don't have small people.... only a niece!

Take care

Kate

xxx

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Thanks Kate I'll have a look through previous threads and see what I can find .Much appreciated Nikki xx

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Hi Nikki, My son has been on S/c bricanyl since he was 8 so about 3 yrs. We were in a very similar pattern with Sean constantly in and out of hospital and increasingly unstable. Sean is a patient of Royal Brompton and they have a few kids on this treatment. It didnt take Sean long to get used to the needles and carrying the syringe driver and he definatly noticed the benefits. I know when adults start this treatment they have a trial but we didnt. He was started on a small dose and increased over a week, usually this is done as an inpatient but as there werre no beds we were allowed to come home at night and go back to the hospital the next day. The first few weeks Sean was on s/c he was very well and he noticed himself he could tolerate excercise more, unfortunalty this spell ended with a huge splat after 6 weeks. Since then I would say this is probably the only drug sean is on that we would both say works definatly apart from ventolin. He is on such a huge cocktail of drugs it is hard to tell sometimes which one os working. He still has admissions unfortnatly some requiring Icu but not as often, he still has splats during excercise sometimes. On a couple of occassions he has had the s/c unplugged overnight and his peakflow has dropped by 50% so theres evidence it really helps him. In our experience the s/c has been a treatment that hasnt 'cured' but helps to keep his lungs more under control .

Re: Itchy neck and Chin, I can often see a splat coming before Sean does as he will scratch away at throat, the worse the itch usually the worse the attack is.

If you need a chat or want to know any more feel free to message me.

Let us know how things go

Julie x