RE: Living with a Child with Russel Silver Syndrome my story

[Guest guest]

It's wonderful to hear how you (and your wonderful mom!) have helped your

daughter through all these extra challenges on top of her RSS, I send my

hugs and congratulations! It sounds like is a special little girl

indeed!!!

Inga

At 08:07 PM 8/9/2005 +0000, you wrote:

>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]

What a strong mom and daughter you both are to

overcome so much without anyone really to listen and

help you. As you said, seeing her beautiful smile

makes you feel so wonderful. Welcome to this

wonderful family. My name is and my daughter

is 5 1/2. She was originally diagnosed at 3

3/4 years old as RSS, however, a pediatric endo who is

an expert in RSS said she is not RSS, however, growth

failure. At this point we don't know why she is

growth failure but we are lined up for more blood

work. too has overcome some battles, and like

you, the smile I get from her makes me light up

inside. I just want her to be a happy person.

By the way, where do you live? I live in the US (New

Jersey about 45 minutes from New York City).

B

5 1/2 and Kelli 3

--- veronicavisser wrote:

> 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]

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]

, I'm glad you've found this support group. I'm sorry to

hear of all your difficulties, but happy you found the strength to

endure. Our best to you always.

- H

> 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]

Wonderful 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!