Re: Re: Roll Call - Witold-

[Guest guest]

Hi ,

Agata feel quite good.Last week she was in Wroclaw Medical Uniwersyty where

is a Department of Pediatrics,Gastroenterology and Nutrition.The medical

staff was very interested in materials about RSS from MAGIC.

Now Agata is at home but she must go back to the hospital after Easter.She

has a problem with her liver and it`s necessary to check it.We hope it is

not a serious problem,because Agata behaves as usual,and her medical issues

are quite good.

Thank you for your kidness.I wish you and all the family a very happy

Easter!

Witold

Roll Call

> >

> >

> > > Hi everyone,

> > >

> > > A couple of weeks ago I set up a poll to ask if we should have a

> roll

> > > call. The majority of voters voted yes, we should.

> > >

> > > So, please report in with:

> > >

> > > 1). First Name, Last Initial -- we have a lot of Debby's and

> Jodi's

> > > on the list.

> > > 2). Where you live, City and State only.

> > > 3). How many children you have & how many with RSS. Please

> include

> > > ages, heights and weight especially for the children with RSS.

> > > 4). Birth height, weight, premature and by how much.

> > > 5). Medication(s), feeding tube and how long they have been on

> it.

> > > 6). Doctor or hospital treating your RSS child(ren). This is

> really

> > > useful for new members.

> > >

> > > Optional -- actually the whole thing is optional

> > > 7). when diagnosed.

> > > 8). Anything else you want to add.

> > >

> > > I'll go first.

> > >

> > > 1).My name is Ken M. -- not too many of those on the list.

> > >

> > > 2). We live in Hollis, NH about 50 mile north west of Boston.

> > >

> > > 3). We have one child, and he has RSS. He will be 7 on

> April

> > > 30. He is 43 " tall and weighs 35 lbs.

> > >

> > > 4). He was born 1 month premature, delivered by C section. He was

> > > 4lbs 5 oz and 17 " long at birth. He was fed by a g-tube for 3

> weeks

> > > but then ate on his own and came home when he was a month old.

> > >

> > > 5). He is on growth hormone and has been since July 2002. We just

> > > stopped giving him periactin but it looks like we will need to

> start

> > > that up again. He does not need a feeding tube but we are always

> just

> > > one step away from that.

> > >

> > > 6). is being treated for his RSS by Dr. Alyne Ricker at

> Joslin

> > > Diabettes Clinc, which is just across the street from Children's

> > > Hospital in Boston.

> > >

> > > 7). He was diagnosed when he was about a year old by Dr. Ricker.

> It

> > > was confirmed by a geneticist, Dr. , also of Childrens'

> hospital.

> > >

> > > I hope this covers everything.

> > >

> > > Ken M

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Witold:-)

What is going on with Agata's liver? Why are the doctor's concerned?

J