& pred

[Guest guest]

Hi , Congrats on a diagnosis. At least now you guys can move

forward with an idea of what you are dealing with.

I have a different opinion of prednisolone. My son was two when he

started receiving pred. He had a febrile episode about 25 days out

of the month. He was in the hospital at least once a month. When

our Rheumatologist from Texas Childrens put him on Pred it was like

the movie " Awakenings " with Robin . He started feeling better

and playing. He was on a reducing dose of pred for a year and a

half. We would taper the pred down til he would get a fever, then we

would start all over again. He started to have fevers about 3-5 days

once a month. I don't believe pred is harmless but compared to how

his life previously, we would take the pred. Having 105-106 can't be

good for you either. My son has HIDS which causes inflammation so I

would say it worked for him. He has tried Enbrel, didn't work and

now Anakaria and not much success there either. I know there is

going to be risk with almost every drug they are on. Tonsilectomy's

work for some children too but not on all. I hope we will get Drug

companies to find a happy medium for our kiddos. Unfortuanetly, we

are not talking about an illness with market value for their pocket

books. We have to trust that our doctors are doing the right thing

and in the best interest of our children. You will find through

trial and error what works best for your child. Good luck to you.

Keep tuning into this support group, Thanks to Fran and all of the

parents I have learned and shared so much about my sons illness.

Tammy, Mother of Clay 4 with HIDS