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[Guest guest]

Hi this is response to Patti, Patti I completely agree with you. But what do you

do as parents who have a sick child and when you tell a dr this and that and

they really get mad and basicly tell I am the dr and I know what i am doing you

are a parent who can only see one side to this type of treatment. Right know I

am going through this with Alyssa's dr. I have brought up alot of meds and even

formulas. He wants to put Alyssa on neocate one in the juice box and I repeated

what i had found out about the traces of milk found in the formula and he said

that that it is impossible they couldn't put it on the market with this in it

but Im like hey it is there and i will not risk her getting sick over this.

After the mix up with the subdue I am afraid to try anything he is suggesting

now he said okay we will try the rice milk but I can't find it here. so do we

risk tring to find another dr who doesn't know enough or will try other things

and then Alyssa will get worse or put her through everything all over again just

to come up with the same treatment? Maybe where you are you have a lot of drs

but here there is not that many or there maynot be that many treatments that are

" deemed safe " On the note of prednisone It has been a life safer for Alyssa

even though she still has bad days it is so much better then it was before. You

basiclly have to weigh the pros and cons. either they get better and it masks

the symtoms or it doen't. Alyssa would not be here today if we had not tried

this that is not our words but the words of ALL her drs. it is possible to have

some damage from this but at the same time your child can have damage from this

diease. as for the gastrocrom I can not say for sure that it has helped but I

can't disprove that it hasn't either maybe its a combo of all the meds. This is

probley coming out wrong but the way I took your post was that prednisone was

taboo but for a lot of kids that is the only treatment that will and has helped

save their life. If you find another treatment with out all the side effects

that works PLEASE let us know

Tina