Hi have been keeping up with everyones news but not posted in a while.
I have a 10 year old son who has difficult to manage to Asthma, thankfully he responds well to nebs and pred when in hospital and has only needed to be admitted to HDU once. We seem to be on a 4 to 6 weekly cycle of needing pred/admission (albeit breifly) that generally gets a bit worse in the winter.
Jay is currently taking Seratide 250 : 1000mg daily Slo-phylline 500mg daily and Singulair 5mg He can go through about 20 - 50 puffs of Ventolin a day as he often takes between 5 and 10 puffs at a time. The most annoying thing is when he goes to clinic he's almost always well! His appointments are always in the late afternoon when he is at his best. It gets to me when I read his letters that he appears fine on examination and has good lung function and peak flow, then 2 days later he's admitted with low sats and virtually non existant peak flow reading, when well he can PF at 300 which drops to 60 when he's ill!!
He is mad on sports and really pushes himself to keep up with his mates, often to his detriment. he struggles with aerobic sports like running or football but he found gymnastics was really good for him (he is a national level gymnast). When he told the consultant he was using so much Ventolin throughout the day he felt is was not really necessary as he seems so well in clinic. His answer was that Jayden must be getting scared of wheezing and mistaking natural breathlessness after exertion for asthma, quote ""I am sure if either I, or your mother ran around the playground we would also feel out of breath but this does not mean we need Ventolin, just a little rest!"" I tried to explain that Jayden is actually really fit and healthy, you only have to look at his body to see he exercises regularly but his lungs just can't cope with runnung around. All on deaf ears.
Anyway getting off the point a bit there, got a little carried away with the rambling. After a furthur 3 admissions the consultant had to admit there was a problem and that he did drop from brilliant to wrecked within 24 hours. There has been a suggestion to give Pred on a daily basis at least over the winter to see if this keeps Jayden out of hospital. Obviouisly I am not over joyed with the idea because of the long term side effects but he is taking a 5 day of 40mg almost every 6 weeks anyway, so am not sure which is worse. Would really like some advise from others with wee ones who are taking this so I can go in fully armed to the next appointment. Really not sure how I feel about it all. My son is really impressed as he heard it would slow down his growth, he is a giant in the gymnastics world and really wants to be small! Obviously he would like to be as symptom free as possible so he can go about enjoying his life a bit more. I worry about adrenal suppression and osteoporosis but do not know which dose would cause these problems or how long you would need to take pred for this to happen. Any advise would be welcomed, I just want whats best for Jay, not just now but in the future.
Thanks for reading sorry it was so long.