Re: To Debby B Toronto Canada

[Guest guest]

Dear Debby, is going to visit a

endocriniologist on the 8th to evaluate if she can

receive GH. Do you find the treatment to be

effective, is it worth it to let your child go thourgh

all the trauma?

Elize South Africa

--- " Debby B. " wrote:

> Hi

>

> I just about fell off my chair reading your story!

> What an experience. I

> have to go for a doctor appt. in a little while, so

> I have to keep this

> brief.

> First welcome! And second, I'll let someone else

> tell you about the Magic

> Foundation (I'm sure they will).

>

> But I just had to tell you, my son Adam, who has RSS

> was born on October 9th

> 1992. One day before your daughter! What a small

> world.

>

> My son was 5 lbs 3 oz at birth and it took us hours

> as well to get him to

> drink one little tiny bit of formula. But no one

> thought anything was wrong,

> he didn't get sick, he was actually chubby until he

> reached 2 years of age.

> Then he started to look deathly ill (lots of colds,

> that I think he was

> catching from his older sister who had just started

> school then and was

> bringing every bug home with her).

>

> Anyway, the long and short of it is after many years

> we got to start GH when

> Adam was 8. He's 4'7 " now and weighs about 70 lbs.

> We live in Toronto

> Canada.

>

> We will chat more later; but I have had to do these

> many years on my own;

> which I got from your email that you did as well. If

> it weren't for my

> mother and father; I wouldn't have made it either.

>

> Debby

>

>

> Living with a Child with

> Russel Silver Syndrome my

> story

>

>

> > Hi! It is nice to eventialy be able to communicate

> about my child's

> > condition. was born on 10 October 1992

> at a birth weight of

> > 900 grams and 52cm long. She was born

> dismenture(small for date

> > baby), and looked horible I was disapointed,

> because here I had this

> > pink, pealing very skinney little baby.(In all I

> was acused of being a

> > alcoholic and or a chain-smoker to give reason for

> my childs birth

> > condition.)

> >

> > was hospitalised for 2 and 1/2 months in

> an icubator in a

> > general hospital facility. She was tube fed and

> did not move at all

> > by herself. Luckely I am a registred nurse and

> could at least give

> > her the tube feeds. Althoug I was not allowed to

> cuddle her or pick

> > her up at all.

> >

> > At her first week she had a elevated temparature

> of 40degrees, and I

> > was shocked to see the big infusion in my childs

> head. It was said

> > that she got sick because she was handled too

> mutch. She was put on

> > IV antibiotic treatment. She got better. After

> discharge at the

> > wieght of 2kg she was only at home for 5days and

> needed to be admitted

> > again. By then her peadiatrition had a Heart

> attack and was not

> > available. It was very difficult to explain to

> the medical personnel

> > that took 1 hour to drink her 20ml feed

> (a 3 hour routine)

> > They thought that my child was underfed and that I

> could not handle

> > her well. Nobody took the time to listen to her

> history.

> >

> > So things wnet on for about 2 years, continously

> contracting

> > pneumonia, admitted and treated with Iv

> antibiotics. Then my general

> > practitioner refered her to an Endocrine

> Specialist in Pretoria South

> > Africa, who just said " This child has just got a

> over Pigmentation

> > (coulouring of her skin)and there is nothing wrong

> with her " althoug

> > I had to give her medication for a Fever that day.

> >

> > So anoter 2 years went by till a wonderfull person

> came into my life A

> > peadiatrition Dr Elna Gibson she understood me,

> she evaluated my child

> > and her condition, we tried various treatments to

> build 's

> > Immune system and to prevent the chronic

> pneumonia. We were refered

> > to HF Verwoerd Hospital, where under the care of

> Prof Witteberg and Dr

> > Andre van Niekerk, 's diagnoses were made

> at the age of 5

> > years. She has a highly IGg2 difficiency,

> developed bronchiectasis

> > from the chronic pneumonia and of course Russal

> Silver syndrome.

> >

> > They started her on monthley Polygam infusions

> (Human Imunoglobolin)

> > which helped not to get sick so often.

> We treated her wirh

> > the Polygam till she was 8 years old, where she

> had a

> > lobectomy(partial removal of her one lung)to

> remove the affected part.

> > Since then she never had Pneumonia again.

> is now 13 years

> > old and weigs 15kg, and stil wears 6 to 8 years

> clothes. She is a

> > sweet little one and always have a smile to give.

> If it was not for

> > that smile I would have not made it throug this

> years. In all this

> > time I maintained a steady job, never took of

> work. Thanks to my

> > dearest Mom, I even tought her to administer

> 's Iv medication.

> > Otherwise I went and give her treatment at lunch

> breaks, after work

> > and in the middle of the night.

> >

> > had to undergo bilateral Osteotomies to

> straighten her legs,

> > and since 1 Jan 2004 her left leg did not heal,

> the internal

> > ficksation had to be replaced twice, and she was

> in a spica splint for

> > 8 months. Now the only thing we can do is to hold

> thumbs for her leg

> > to heal.

> >

> > We made it, and are trying to get permision form

> our Medical Aid to

> > start growth hormone treatment. has got

> all the clinical

> > signs of the Syndrome and is actually a

> beatifull child, and I

> > love her to death. It was hard to have depression

> and handling it

> > myself. Sometimes dificult to handle people's

> rude comments, just

> > bacause they did not ask qeustions and did not

> listen. If anyone has

> > qeustions where I can assist you, feel free to do

> so. My child is

> > over the worst and now we can breathe I needed

> help a long time ago,

> > and the support groups and various countries

> should be more reachable.

> >

> > I only got all the information of the Syndrome in

> 2003. That is a

> > shame I could have done a lot more!

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Elize,

In the scheme of things, giving your child a gh shot every night is

really not traumatic. Of course, there is some at the beginning.

Most of us are afraid of needles. But as time goes by, it gets

easier and the child gets used to it.

I'm sure you've read my posts about my son Max. He was one of the

first to receive these gh shots under the direction of Dr.

Harbison. He's now 17 and taller than I am. (I am 5'3 " .) We never

thought we would see the day. And he has had a tough, tough time

growing and growing up. Now he gives himself the shots and has to

do it twice a day to maximize the usage of the gh.

I think that if you are able to get the gh, then you should at least

try it. I do not think there is anyone who has a regret about using

it. Not only does it help socially because the kids grow and start

to catch up to their peers, but it helps in physical ways, too.

Muscle-tone increases, blood sugar stablizes.... Something that is

important to consider for our kids.

I know of at least one other RSS child in South Africa. She is a

patient of Dr. Harbison's. Her parents are the ones who told Dr. H.

about Zoladex to supress puberty. Max was Dr. H's first patient to

use it under her supervision. Do you know of any other in South

Africa?

Jodi Z