Guest guest Posted June 23, 2002 Report Share Posted June 23, 2002 Hi i have a little boy at the age of 4. He does not Walk or speak yet. He was born full term weighing at 6lb. 15 oz. with no complications. When he was 5 months old we started to notice some delays. SO we began to take him to all kinds of doctors. No one seems to know what is wrong. He did not drink alot of formula. I always worried about that and the doctor would say he will drink only what he wants and not to worry. When he was almost 2 i was told maybe he had RSS. This is still not comirmed. He weighs now 26 lbs. HIs height is fine. He eats very well but does not put the weight on.VIncent is very thin. He does crawl and walk all round furniture and crawls up the steps. A Very happy little boy. ALways smiling. He has lots of sounds but no works. He had his bone age checked and it was normal. Never had reflucks. Never had to be in the hospital. His face is small, ears stick out, every low muscel tone, little lips and a pointy chin. Now he sometimes get seizures but it is unknown why. ALl his test come up normal. EEG showed something on the left side of brain. A MRI was done and came back normal. ALl his blood work is normal. Het gets all therophy that is needed all week long. His is improving but very slow. Does anyone have a child like this. Can it realy be RSS. I read other E-mail and this seems alittle different then the other children? He is not sick like the other kids. Can anyone help. Thank you, Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2002 Report Share Posted June 23, 2002 Angie, When you say his heigth is fine, how tall is he? Also is his head size normal for a four year old? Pattie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2002 Report Share Posted June 23, 2002 Hi Angie, is very lucky to have a loving mom like you! You mentioned that he is 26 lbs., do you know how tall he is? It is great that he is receiving therapy and making some progress. I don't know if he does have RSS or not, but you are right, he does have many characteristics that other RSS kids do not have. Where do you live? You said he has been to many different doctors, was it an endocrinologist that diagnosed the RSS? Has been seen by a geneticist lately? There have been some big advances in genetics in the last couple of years and new tests available to pinpoint many different genetic conditions. Welcome to the group! (mom of Charissa, age 17) > Hi i have a little boy at the age of 4. He does not Walk or speak > yet. He was born full term weighing at 6lb. 15 oz. with no > complications. When he was 5 months old we started to notice some > delays. SO we began to take him to all kinds of doctors. No one > seems to know what is wrong. He did not drink alot of formula. I > always worried about that and the doctor would say he will drink only > what he wants and not to worry. When he was almost 2 i was told > maybe he had RSS. This is still not comirmed. He weighs now 26 lbs. > HIs height is fine. He eats very well but does not put the weight > on.VIncent is very thin. He does crawl and walk all round furniture > and crawls up the steps. A Very happy little boy. ALways smiling. > He has lots of sounds but no works. > > He had his bone age checked and it was normal. Never had reflucks. > Never had to be in the hospital. His face is small, ears stick out, > every low muscel tone, little lips and a pointy chin. Now he > sometimes get seizures but it is unknown why. ALl his test come up > normal. EEG showed something on the left side of brain. A MRI was > done and came back normal. ALl his blood work is normal. Het gets > all therophy that is needed all week long. His is improving but very > slow. Does anyone have a child like this. Can it realy be RSS. I > read other E-mail and this seems alittle different then the other > children? He is not sick like the other kids. Can anyone help. > > Thank you, > Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2002 Report Share Posted June 23, 2002 Hi Angie, is very lucky to have a loving mom like you! You mentioned that he is 26 lbs., do you know how tall he is? It is great that he is receiving therapy and making some progress. I don't know if he does have RSS or not, but you are right, he does have many characteristics that other RSS kids do not have. Where do you live? You said he has been to many different doctors, was it an endocrinologist that diagnosed the RSS? Has been seen by a geneticist lately? There have been some big advances in genetics in the last couple of years and new tests available to pinpoint many different genetic conditions. Welcome to the group! (mom of Charissa, age 17) > Hi i have a little boy at the age of 4. He does not Walk or speak > yet. He was born full term weighing at 6lb. 15 oz. with no > complications. When he was 5 months old we started to notice some > delays. SO we began to take him to all kinds of doctors. No one > seems to know what is wrong. He did not drink alot of formula. I > always worried about that and the doctor would say he will drink only > what he wants and not to worry. When he was almost 2 i was told > maybe he had RSS. This is still not comirmed. He weighs now 26 lbs. > HIs height is fine. He eats very well but does not put the weight > on.VIncent is very thin. He does crawl and walk all round furniture > and crawls up the steps. A Very happy little boy. ALways smiling. > He has lots of sounds but no works. > > He had his bone age checked and it was normal. Never had reflucks. > Never had to be in the hospital. His face is small, ears stick out, > every low muscel tone, little lips and a pointy chin. Now he > sometimes get seizures but it is unknown why. ALl his test come up > normal. EEG showed something on the left side of brain. A MRI was > done and came back normal. ALl his blood work is normal. Het gets > all therophy that is needed all week long. His is improving but very > slow. Does anyone have a child like this. Can it realy be RSS. I > read other E-mail and this seems alittle different then the other > children? He is not sick like the other kids. Can anyone help. > > Thank you, > Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2002 Report Share Posted June 24, 2002 Pattie 's head is alittle smaller then a 4 year old sould have and his height is about 3 feet. He had an MRI and it came back normal. ANgie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2002 Report Share Posted June 24, 2002 Pattie 's head is alittle smaller then a 4 year old sould have and his height is about 3 feet. He had an MRI and it came back normal. ANgie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2002 Report Share Posted June 24, 2002 Hi Angie, The test I was talking about is a blood test that look at a specific chromosome to see if there is a problem with it. It is called a FISH test - the name has to do with the type of flourescent imaging used to look at the chromosome. It is usually a geneticist who looks for chromosomal defects. They look at all the characteristics of the child & decides what the problem might be, then orders the test to verify it. The doctor won't just order tests on all the chromosomes, there are too many chromosomes and each test costs several hundred dollars. This is a huge area of research right now, and more is being learned every day! You didn't mention where you live. If you tell us, maybe someone on the list lives near you and could give you some recommendations on doctors they use. Does have a pediatrician who keeps track of his growth and developmental records? People on this list are very supportive and helpful. Keep asking questions, we will do our best to answer! (Charissa's mom) > Hi Angie, > is very lucky to have a loving mom like you! You mentioned > that he is 26 lbs., do you know how tall he is? It is great that he > is receiving therapy and making some progress. I don't know if he > does have RSS or not, but you are right, he does have many > characteristics that other RSS kids do not have. Where do you live? > You said he has been to many different doctors, was it an > endocrinologist that diagnosed the RSS? Has been seen by a > geneticist lately? There have been some big advances in genetics in > the last couple of years and new tests available to pinpoint many > different genetic conditions. > Welcome to the group! > > (mom of Charissa, age 17) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2002 Report Share Posted June 24, 2002 Angie - I would encourage you to call the MAGIC Foundation tollfree at 800-3MAGIC3 and ask them to mail you the RSS information. It should arrive in a couple days. Read through that, and then come back here to the listserve with more questions. In addition, I am absolutely FLOORED that your neurologist nor your pediatrician have not referred you to either a pediatric endocrinologist or a pediatric gastoenterologist. " Technically speaking, " a pediatric gastroenterologist specializes in " GI " issues of a child - stomach, intestine, esophogus - in a sense, the GI doctor helps a child when the child isn't gaining weight. A pediatric endocrinologist steps in when a child isn't growing in height. Sometimes, if a child is underweight it will make the child not grow in height. So usually the child starts first with the peds GI doctor, but not always. It may simply be that your child's other health issues (neurology issues) have taken precedence with your child's physicians, and that they haven't worried about the weight and height as much. I would ask your neurologist or your pediatrician what they think. Ask them why they think your child is underweight and short-statured, and ask them what they think you should do about it. > Dear , > Thank you so much for writing me back. I have no one to help me. I got > tired of doctors not knowing what is wrong, so i stopped going. He has never > been to a gastroenterolist. No one has ever told me to go to one. Please > explain what is malabsorption. I am not educated on all these terms. My > first child weighed 7lbs 4 oz and my third child weighed 8lbs. 14 oz. Can > RSS accure while you are pregnant? > When I was, there was a 2 vessel cord instead of 3 for the umblical cord. > Could that mean anything. The doctors tell me they don't know. I am so > tired of not knowing anything about VIncent. > Thank Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2002 Report Share Posted June 24, 2002 Angie - I would encourage you to call the MAGIC Foundation tollfree at 800-3MAGIC3 and ask them to mail you the RSS information. It should arrive in a couple days. Read through that, and then come back here to the listserve with more questions. In addition, I am absolutely FLOORED that your neurologist nor your pediatrician have not referred you to either a pediatric endocrinologist or a pediatric gastoenterologist. " Technically speaking, " a pediatric gastroenterologist specializes in " GI " issues of a child - stomach, intestine, esophogus - in a sense, the GI doctor helps a child when the child isn't gaining weight. A pediatric endocrinologist steps in when a child isn't growing in height. Sometimes, if a child is underweight it will make the child not grow in height. So usually the child starts first with the peds GI doctor, but not always. It may simply be that your child's other health issues (neurology issues) have taken precedence with your child's physicians, and that they haven't worried about the weight and height as much. I would ask your neurologist or your pediatrician what they think. Ask them why they think your child is underweight and short-statured, and ask them what they think you should do about it. > Dear , > Thank you so much for writing me back. I have no one to help me. I got > tired of doctors not knowing what is wrong, so i stopped going. He has never > been to a gastroenterolist. No one has ever told me to go to one. Please > explain what is malabsorption. I am not educated on all these terms. My > first child weighed 7lbs 4 oz and my third child weighed 8lbs. 14 oz. Can > RSS accure while you are pregnant? > When I was, there was a 2 vessel cord instead of 3 for the umblical cord. > Could that mean anything. The doctors tell me they don't know. I am so > tired of not knowing anything about VIncent. > Thank Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2002 Report Share Posted June 24, 2002 Angie - I would encourage you to call the MAGIC Foundation tollfree at 800-3MAGIC3 and ask them to mail you the RSS information. It should arrive in a couple days. Read through that, and then come back here to the listserve with more questions. In addition, I am absolutely FLOORED that your neurologist nor your pediatrician have not referred you to either a pediatric endocrinologist or a pediatric gastoenterologist. " Technically speaking, " a pediatric gastroenterologist specializes in " GI " issues of a child - stomach, intestine, esophogus - in a sense, the GI doctor helps a child when the child isn't gaining weight. A pediatric endocrinologist steps in when a child isn't growing in height. Sometimes, if a child is underweight it will make the child not grow in height. So usually the child starts first with the peds GI doctor, but not always. It may simply be that your child's other health issues (neurology issues) have taken precedence with your child's physicians, and that they haven't worried about the weight and height as much. I would ask your neurologist or your pediatrician what they think. Ask them why they think your child is underweight and short-statured, and ask them what they think you should do about it. > Dear , > Thank you so much for writing me back. I have no one to help me. I got > tired of doctors not knowing what is wrong, so i stopped going. He has never > been to a gastroenterolist. No one has ever told me to go to one. Please > explain what is malabsorption. I am not educated on all these terms. My > first child weighed 7lbs 4 oz and my third child weighed 8lbs. 14 oz. Can > RSS accure while you are pregnant? > When I was, there was a 2 vessel cord instead of 3 for the umblical cord. > Could that mean anything. The doctors tell me they don't know. I am so > tired of not knowing anything about VIncent. > Thank Angie Quote Link to comment Share on other sites More sharing options...
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