Advise on daily Pred

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.

[Hidden]

I don't have any direct experience of steroids in children but thought the following extract might be useful to discuss with the consultant. Source was asthmacenter.com. This site has some very clear information about steroids.

Alternate-Day Oral Corticosteroid Treatment

When inhaled corticosteroids and other medications fail to control severe asthmatic symptoms, alternate-day corticosteroid therapy may be considered as a treatment option.

In order to minimize the potential for side effects, many specialists may recommend treating you with a low dose oral corticosteroid with a shorter half-life such as prednisone or methylprednisolone (Medrol®) every other morning. If these short acting corticosteroids are taken as soon as you wake up in the morning, the medication will have a limited suppressive

effect on the adrenal glands for only one day. On the following morning, your

adrenal glands may resume their normal production of corticosteroids (cortisol). The day of corticosteroid treatment is usually referred to as the “on” day and the day that the corticosteroid is not given is called the “off” day.

Since the adrenal suppressive effect can last 12 - 24 hours, it is very important to take oral corticosteroid medications early in the morning as soon as you awaken. Taking the medication later in the day to catch up because you forgot the morning dose defeats the goals of this maintenance program. Administration of corticosteroids on an every-other-morning treatment plan is called alternate-day therapy. Since the anti-inflammatory or anti-asthma effects of corticosteroids appear to last longer than their suppressive effects on the adrenal glands, this approach gives you the benefits of oral corticosteroid therapy with little or no side effects when used in low doses.

Alternate-day oral corticosteroid treatment is a sophisticated type of therapy, and you must be under close supervision by a knowledgeable physician if involved in such a program.

[Hidden]

Hi Casper my daughter is 6 and has severe/brittle asthma she has been on daily pred for the last 18months.She takes 40mg every day as well as other medication.she is very small for her age and the pred also turns her into a raging monster.Chloe finds it difficult to concentrate at school and her sleep is poor.She sounds very similiar to your son in respect of attacks and symptoms as we rarely leave hospital from october until May.It hasn't lessened her attacks at all and her consultant now thinks her body is so used to it that it has very little effect so they are thinking of changing it. I hope all goes well with your son and you manage to get things sorted as the winter months creep upon us. Good Luck and let us know how things go . Nikki xx

[Hidden]

Hi, my son is nearly 11 and has been on daily oral steriods since he was 3 at high dose. He now takes pulmicort,oxis,ciclosporin,s/c bricanyl,montelukast,domperidone,omprezole,neo clarityn,slo phyllin. He is quite unusual in the fact he has always been tall for his age so steriods havent stunted his growth but ive been warned when he hits puberty he may stop growing. The steriods over the years have caused moon face, acne, mood swings and he still had numerous admissions but i do believe they have been a life saver as well when used in massive doses in hospital. We found out this summer he now has a suppressed adrenal gland and he has become steriod resistant hence the ciclosporin. I think its a very difficult decision to make whether to commence daily pred but on the positive side if the pred does its job and reduces your sons airway inflammation and improves his health then I personally think its worth the risk with side effects.

Jay sounds very much like Sean, Sean will push himself to extremes to prove he can do sports, he also can look very well and then splat big time out the blue. Even when he very unwell he manages to look wellish, fortunatly the Rbh know to ignore how he looks and concentrate on chest, but then he doesnt always wheeze either so then its guess work! I think kids have a knack of being well in clinics etc, I can be telling doc in local how bad he has been and they just say well his chest is clear now, I find it embaressing sometimes at clinic when he proves me wrong but if Jay's medical notes are anything like Sean's the con should know how severe their asthma can be.

Good luck with making your decision.

Julie x

[Hidden]

michael takes alternate day pred and has done for about 18months now. hes 4. the cons recommended alternate days to limit the side effects although he still has a bit of a moon face!!! it has relieved his daily symptoms and he has only been in HDU twice since starting compared to every 2nd admission beforehand. it is alot to think about but if they keep an eye on it and keep him on the smallest dose possible, then the benefits do seem to outweigh the side effects. michael does still get unwell and has daily symptoms but they are more under control now, although he has started a few new meds over the past year or so, i cant say for definate it was the pred but i do believe that it helps. have an in depth conversation with your cons and weigh it all up. michael is also very lucky in the way that he is still average size wise(he has slowed down - he was well above average before but they gave no way of knowing whether it was the pred or him evening himself out!!!) good luck, i hope it all calms down soon