Guest guest Posted May 7, 2002 Report Share Posted May 7, 2002 Its been since Tuesday since we came back from the geneticist and very quickly he diagnosed Lindsey with Silver syndrome! Please don't run out and research RSS.It has nothing to do with apraxia and this is why I think the diagnoses is wrong!(I do today anyway lol) It is basically a dwarfism syndrome with a characteristic face. With my looks and pictures of my mother and the rest of the family he said she HAS silvers. I am 5'1, and her dad is 6'3, otherwise she would be much shorter then 42 inches, which isn't that short! we have always struggled with her weight though. She does have some things in common with this syndrome, but Lindsey's speech is VERY unclear, and she has recently regressed some in speech. She is almost 6 (June 4th) and talks like 3 if that, but slurry and unclear and very apraxic.. This is her main problem, She also has hypotonia and developmental delay. Her speech makes her appear alot lower functioning then she is. Lindsey's other biggest struggle is fine motor, she has an awkward grasp and still cannot hold, eating utensils, or writing things correctly. With silver syndrome you are small, one side of the body is sometimes different, weight gain is a big problem and you can have speech and learning difficulties, but NOT like Lindsey I am afraid. If someone knows more, please tell me! The other features which Lindsey has according to DR BENKE is triangle face, broad forehead, small chin (where lol)umm..hypoplastic cheek bones, high narrow palate,incurved pinkies. There is more but I can't remember right now. I'll have to wait for the report. I would love to know your childrens height and weight at 5 years 11 months, especially if one parent is short and one is tall, everyone on my side is short and everyone on hubbies side is very big! feedback please! Jennie http://lindsey03.homestead.com/mygirl.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2002 Report Share Posted May 7, 2002 Hi Jennie! I visited a metabolic/genetics dr who immediately diagnosed my daughter and his immediate diagnosis turned out to be wrong. He said she had an obvious overgrowth sydrome. Then I contacted an expert on overgrowth syndromes who had us have my daughter's wrist xrayed and it turned out to be normal. So, based upon the brain MRI, the bone age study (wrist xray) and all of her records, he said no overgrowth syndrome. So, my point is, sometimes so called great doctors make immediate judgments that aren't correct. take care, Carolyn from NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2002 Report Share Posted May 7, 2002 Jennie - my son is almost 4 (in july) and I can tell you that he's 44 " and 41 lbs. While he's at the high end of the scale, he seems completely average with the other children on our street (25!!). I'm 5'3 " and my dh is 6'. Hope this helps! Marina > Its been since Tuesday since we came back from the geneticist and very > quickly he diagnosed Lindsey with Silver syndrome! Please don't run > out and research RSS.It has nothing to do with apraxia and this is why I > think the diagnoses is wrong!(I do today anyway lol) It is basically a > dwarfism syndrome with a characteristic face. With my looks and pictures of > my mother and the rest of the family he said she HAS silvers. I am > 5'1, and her dad is 6'3, otherwise she would be much shorter then 42 inches, > which isn't that short! we have always struggled with her weight though. She > does have some things in common with this syndrome, but Lindsey's speech is > VERY unclear, and she has recently regressed some in speech. > She is almost 6 (June 4th) and talks like 3 if that, but slurry and unclear > and very apraxic.. > This is her main problem, She also has hypotonia and developmental delay. Her > speech makes her appear alot lower functioning then she is. Lindsey's other > biggest struggle is fine motor, she has an awkward grasp and still cannot > hold, eating utensils, or writing things correctly. > With silver syndrome you are small, one side of the body is > sometimes different, weight gain is a big problem and you can have speech and > learning difficulties, but NOT like Lindsey I am afraid. If someone knows > more, please tell me! > The other features which Lindsey has according to DR BENKE is triangle face, > broad forehead, small chin (where lol)umm..hypoplastic cheek bones, high > narrow palate,incurved pinkies. There is more but I can't remember right now. > I'll have to wait for the report. > > I would love to know your childrens height and weight at 5 years 11 months, > especially if one parent is short and one is tall, everyone on my side is > short and everyone on hubbies side is very big! > > feedback please! > Jennie > http://lindsey03.homestead.com/mygirl.html > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2002 Report Share Posted May 7, 2002 Jennie, My son is 5 yrs 5 months weighs 42 lbs and is 46 inches and is about the average just a little thin. My husband is 6'2 " and I am 5'1 " . Daphne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2002 Report Share Posted May 8, 2002 HI - My sons are verbal apraxic and they are exactly 4 1/2 yrs. old, one is 49lbs and 43 inches and they other is 46 lbs. and 43 inches... They are in the 90 percentile. I am 5'7 and my husband is 5'11. JOYA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2002 Report Share Posted May 8, 2002 Hi , Tanner is 5 years and 11 months and he is around 51 inches tall / 60 pounds -he's literally off the charts huge for his age according to the doctors, my friends and family, and even strangers. At birth and up to the age of three he was in the normal range -Coincidently - Tanner's been on EFAs -first Efalex and now ProEFA for the past three years. Tanner plays with his seven year old brother Dakota's friends who are mostly eight or nine years old and is the same size or taller than most of them. Tanner is not much shorter than Dakota either - who has only been on EFAs from around 5 to now. When we were just filmed for the PBS Documentary Tanner actually tackled the one production guy that was playing ball with the kids and knocked him off his feet!!! (you can tell this guy was really shocked by his face and then he shook his head in disbelief and said " He just knocked me down -I can't believe it! " ) The new genetic doctor who is part of our kid's Pediatric Practice was puzzled by Tanner's growth and wanted to see if he had a syndrome where his bones were older than his body. So far tests show nothing however. Funny thing is about from our group whose son Khalid is now 15 and 6' 4 " and built like an athlete with global apraxia (speech and limbs)and a success story today. -who is one of my bestest friends tells me that Tanner reminds her of Khalid when he was younger which of course I love to hear since Khalid is doing so well. Tanner and Khalid had the chance to meet during the filming for the Inside Edition segment on apraxia (Inside Edition still has our http://www.apraxia.cc link up because everytime our segment reruns they get calls asking " what is apraxia?!! " )-and we still have Khalid and Tanner's pictures together up on the site I think so you can see for yourself maybe. I'm 5' 51/2 " and my husband's shorter than he should be due to brain surgery which caused stunted growth when he was a baby. His brothers are only about 5' 10 " though so not much taller than Glenn. My dad however was 6' 4 " -so around Khalid's height. Go figure! Hope other's share as well! ===== Quote Link to comment Share on other sites More sharing options...
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