Re: Miriam

September 16, 1999

Shana,

Spencer is on 12 mg every other day and on Vivonex and on mostly IV TPN. Does

she have Eos Colitis? We tried doing an every day low dose of prelone and it

didn't work, but when we tried doing this every other day.....which is better

for the child and side effects it is working pretty good. Although he only

get's about 1 cup of Vivonex per day. We have to live the life that he will be

on Steroids for a very long time. There are terrible side effects of steroids.

So many to mention. If you would like me to I can.....just let me know. I

think I am the Steroid queen.........I have looked a lot into it and my son has

suffered from the side effects. Some don't though. 5 mg every day isn't that

much.......but upping it again and again will cause problems. She may just have

to stay on the Vivonex. I would pick that over Steroid any day. Unfortunately

Spencer has to be on Steroids, Vivonex and Primarily TPN (IV) for nutricen.

I am sorry that things are starting to get ruff again.

Love,

[eosinophilic gastroenteritis] Miriam

Miriam was reduced about 2 weeks ago to 2.5 mg every other day of prednisone

which is almost nothing and she was able to tolerate chicken,rice products, and

apple products every once in a while seh would have french fries. In the

beginning when she was reduced she started to have looser stools as time went on

she started getting alot of stomache pains (waking her up a few times in the

night) and the diareah started getting worse she is now having completly watery

stools 10 times a day. I spoke to my Gi today and he wants to up the prednisone.

My husband doesn't want to b/c when we originally agreed on the prednisone it

was only to be for 8 weeks it has been more then 3 months already and he made it

sound like we should do it for years if need be. Will being on 5 mg long term

cause side effects. Should we let her live a life on prednisone and be able to

eat chicken and rice products or do we take the chance of taking her off the

prednisone and she may have to go back to the life she had before of tube

feedings and vivanex.

If someone could give me some advise I'd greatly appreciate it

Shana ( mom to Miriam 3 1/2 EG, food allergies, YIsroel 2 ,food

allergies,asthma, Tehilla 7, ADHD,learning disabilities)

September 16, 1999

I have to be honest with you on the issue of prednisone. At first I was all

gong ho on the fact Alyssa was able to eat some but then reality hit she

wasn't getting better. We put on the pred. in the hope that things were

going to improve and that really didn't happen. Every time she had a so

called flare up they had to up the dose and she could not funtion on a low

doseage. we ended up being on a higher dose then we started on. Our GI told

us that she couldnot remain on such a high dose Alyssa is 3 she was 25mg a

day. he even went as far as to say that he was surprized that her body had

not shut down. to me being a mother If I had known that I would have refused

the med to begin with. There are a lot of things to consider pro and cons.

If Miriam could eat chicken and a FEW other things is that makeing her

better? and at what cost. I would rather have Alyssa on a formula for the

rest of her life then have to worry about if I could find a organ to replace

hers. and that would happen eventually. Should she remain on the pred. I

hope this helps. I wish someone would have sat me down and shook me before I

agreed to this treatment I feel like I just didn't didn't have all the facts.

and alot of that is my fault I thought it was a mircle DRUG and it turned out

to be the drug from hell. Tina

September 16, 1999

Hi,

My husband is on 5mg/day Prednisone and it is enough to enable him to

eat a few foods without symptoms. The doctor who put him on this dose told

him it was about what the body naturally produced and that side-effects

would be minimal as a result. He has developed some new allergies while on

this low dose of Prednisone, and he is on a very limited diet so it is not a

perfect solution. So far, though, it is the only solution to offer him hope

of being able to keep on going. We tried him on Azathioprine (Imuran;

related to 6-MP) but the side-effects finally caught up with him and we had

to pull him off of it. I hope this tidbit of info helps...

-Joy

(Crohn's, GERD, allergies, RSD & FMS; husband has EG, allergies &

Asthma)

September 16, 1999

I am not sure but the allergy doctor said if we could get BJ down to 7 mg a day

that is the amount your body normally produces and the side effects were much,

much less. We were never able to get that low.

Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis,

Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24)