Guest guest Posted September 1, 2005 Report Share Posted September 1, 2005 , How are doing, and did she have her blood tests done? is doing very well and are very exited to be in the school play (Music and dancing is her life) We live in Gauteng, South Africa Elize mom to RSS --- Briggs wrote: > 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! > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2005 Report Share Posted September 2, 2005 Hi Elize. How are you and ? We don't have 's blood results yet. I called a few days ago and I'm waiting. I'm not sure if the results are in or if Dr. H has not had a chance to read them and have her assistances call me. I'm about to register for her dance class again this year. will be starting kindergarten in 5 days. Please let me know how 's school play went. I bet she shines like a star on stage. B 5 1/2 and Kelli 3 --- Elize Visser wrote: > , How are doing, and did she have her > blood tests done? is doing very well and > are > very exited to be in the school play (Music and > dancing is her life) We live in Gauteng, South > Africa > > Elize mom to RSS > > --- Briggs wrote: > > > 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 > === message truncated === ____________________________________________________ Start your day with Yahoo! - make it your home page http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2005 Report Share Posted September 7, 2005 Hi ! All is well with , will be visiting the Endo tomorrow. I will post a picture of . Hope you get closure on 's blood tests soon. Elize --- Briggs wrote: > Hi Elize. How are you and ? We don't have > 's blood results yet. I called a few days ago > and I'm waiting. I'm not sure if the results are in > or > if Dr. H has not had a chance to read them and have > her assistances call me. I'm about to register > for her dance class again this year. > will be starting kindergarten in 5 days. > > Please let me know how 's school play went. > I > bet she shines like a star on stage. > > B > 5 1/2 and Kelli 3 > > --- Elize Visser wrote: > > > , How are doing, and did she have > her > > blood tests done? is doing very well and > > are > > very exited to be in the school play (Music and > > dancing is her life) We live in Gauteng, South > > Africa > > > > Elize mom to RSS > > > > --- Briggs wrote: > > > > > 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 > === message truncated === ______________________________________________________ Click here to donate to the Hurricane Katrina relief effort. http://store.yahoo.com/redcross-donate3/ Quote Link to comment Share on other sites More sharing options...
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