/To Sauceycakes Re: I´m still looking for moms whose chd have AIH

[Guest guest]

Hello !

I hope everything is doing all right with you, the new baby, and

especially with .Sorry for my late reply.

It´s really amazing that sabrina is being seen by a pediatric

specialist.

My son is 9 years.He was dx when he was almost 5.He started with an

elevated dosage of pred and Imuran.Some years have gone and now he

takes 5mg of pred 3 times a week and 37,5mg of Imuran every day.Like

sabrina he´s been having an associated theraphy.It has worked.The

only and mainly thing we miss is the fact his doc lives in another

city which is 3 hours and half by plane.We see her just once a

year.His blood test is sent to her via fax and when he has some

problem due to any other disease such as the measles or any other

thing , she has to call to the hospital in our city and say the

correct meds and procedure the local docs have to take.It´s really

hard for us their parents to live up with that.He has a pediatric

here but he had to learn what and AIH was.

His meds are taken together with milk and some little sugar for the

bitter taste.I think it was wise of his doc cause he hasn´t had lots

of side effects.Sometimes a belly ache in the morning but it´s

rare.How does sabrina take her meds?

I am not sure if you know where we´re from.We live in the northeast

part of Brazil.I´ve gone and studied in US and I´m more comfortable

with western NY and the New England area.

I can possibly go and stay in US for a while in the future and I´m

concerned about finding a pediatric specialist who can take care of

Allec...we never know about some changes in our lives...Could you

please tell me where this doc is and his name, please? You can use my

email or even here.

His doc in Brazil gives lots of lectures around the world and she

might be known by ´s doc.

I hope I can get your email soon.

Best wishes,

Ana

> > Hi all!

> >

> > I´m looking for parents whose chd have and AIH.

> > I´d like to share experiences on treatments, meds and so forth.

> > Hope hearing from you soon.

> > Ana

>

>

> Hi! My name is and my 4 year old daughter has AIH.

> She was diagnosed in November 2000. Her liver count was 3,600

> at that time. Her levels came down very rapidly. She takes

> 2.0 mls of prednisolone and 1.3 mls of Imuran. Her liver

> count seems to stay in the 50's and 60's. The doctors say

> that is probably normal for her. She is seeing a pediatric

> specialist and he is treating 2 other children with the same

> thing. This is so rare and to have a doctor treat 3 kids with

> it is amazing. So far is doing well on the medication.

> There has not been anything else going wrong - thank goodness!

> I am pregnant with my third child (due to deliver any day!)

> and I am going to have the blood cord saved in case it could

> be used for in the future.

>