weaning off long term steroid use...any advice?

[Guest guest]

After 9 months on prednisone for respiratory issues after adenovirus,

we are finally attempting to wean my 6 year old PID daughter off of

them. We had great success going from daily to every other day, but

then going from 5mg down to 4 was a little " bumpy " for a few days.

We now went from 4 mg to 3 the beginning of last week and it has been

quite a battle. She did fine for about 3 or 4 days and then Fri.

evening started to tank. She woke up Sat. with 103 degree fever so I

rushed to to the dr. They did a flu test and strep test on her and

both came back negative. Once the Motrin kicked in and she broke her

fever she was bouncing off the walls and seemed to be fine. They put

her on Omnicef to be on the safe side and Sunday went beautifully, so

I thought we were in the clear. The only compliant she had last

night was that she kept feeling " wobbly " and dizzy she said. Well,

this morning she woke up with 101 fever agian and seems to be weezing

and seems to be tight in her chest. Once agian..the Motrin kicked in

and she is running around and seems fine??? (still seems to have a

hard time breathing when exurting herself) I know this could just be

viral, but my question is...can this be a result of the steroid

weaning? I've read that when you are weaning steroids original

symptoms may return for awhile until the body adjust to the new dose

and if the child gets sick it makes the weaning process even harder

on the adrenal gland? I've put calls in to both her dr. and am

waiting to hear back, but any advice on steroid weaning would be

greatly appreciated!

Thanks!

Becki Rion

Reagon 6 yrs. CVID, asthma, reflux