Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 Hi Kerri, was delivered at 34 weeks because of severe IUGR. He had stopped growing at 32 weeks. My doctor had the cord, placenta and 's cord blood checked right after my delivery, and it all came back okay. In fact, I had a three vessel cord, which was great for getting the nutrition and everything to that he needed. But, for some reason, he wasn't growing. Same case now! We stuff him full of formula through his tube, and we're lucky to get him to gain 3 or 4 ounces in a week. Right now he is just maintaining. The percentages of RSS is 1 in 50,000 to 1 in 100,000 live births. Very rare. But they are all so special. You will read and see on here that they seem to have a strength and a drive about them that amazes us parents all the time. Most of these kids have been through so much, but just make it through the hardest and roughest of times. With all the tests and things performed on them just to diagnosis them with something. And, unfortunately RSS doesn't have a test that gives us the diagnosis. There is a UPD 7 study that can be done, but it only shows up in 10% of the RSS kids. And, ironically enough, it seems to be in the mildest of RSS kids. The spectrum is so wide with RSS, and you will see that as you are on here more. Anyway, I am so glad that you found this group. You will learn so much and make friends for life. There is an endocrinologist in New York City that specializes in -Silver Syndrome. She is the one that diagnosed at 17 months old while he weighed a mere 10 lbs. 10 oz! Very malnourished. The months prior to that was bad, really, really bad. We had no idea what was wrong with him, and I got to the point where I didn't think he was going to make it much longer. And, a couple of doctors had brought up RSS, so I sought her out, and took him to NY. Thank God I did because she made a dramatic difference in him. He is thriving and doing well now! ) Anyway, her name is Dr. Madeleine Harbison and she is WONDERFUL! She can just look at the kids and say they have it or they don't. I hope to hear more form you and you may email me if you want at rollison@ core.com, no space after the @. Have to do that here or else it won't show up. Take care, Jodi R. One of several on here! ) > Ok, I have more questions... Did any of you have problems with the > umbilical cord and placenta during pregnancy? We had a two vessel > cord and velementous (sp?) insertion of the cord. Also, did any of > your kids have single hair tufts on their heads? Shea was bald on > top with dark hair all around the back and sides... she had one tuft > of hair twords the top back part of her head. Also, now where her > soft spot was, is raised a little... does this sound familiar at all? > > Also, how common is this syndrome? Anyone have percentages? > > And, I am not able to view the pictures... I keep getting an error. > Any tips? > > Thanks so much for your help! > Kerri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 Jodi, Thank you so much for the nice reply... everyone has been so great. We tested negative for UPD... but the Gen Doc never mentioned RRS... That was a couple of years ago. We are lucky. Shea has never been malnourished. She has always been able to eat enough to grow on her own little curve. She is just a small petite thing. She is going to be 4 in Dec. and is in 18 months to 2 T sizes... Our biggest issues have been her gross and fine motor skills. She did not walk until she was 23 months and is still not potty trained. Her speech is coming along but it is also a bit delayed. She also has some sensory intergration issues. She is very sensitive to her environment. She has been in early on and will now be starting their preschool program which is 5 days a week. She is very bright... knows her alaphabet and can recgonice numbers 1-10 and can count to 20. She loves to sing and dance. She is very sweet and beautiful. At times I think I did not want to know if she had something wrong or not... but now, I am ready to face it full on... I need to know all I can about her so that I can help her now and in the future.. Thanks again, Kerri > > Ok, I have more questions... Did any of you have problems with the > > umbilical cord and placenta during pregnancy? We had a two vessel > > cord and velementous (sp?) insertion of the cord. Also, did any of > > your kids have single hair tufts on their heads? Shea was bald on > > top with dark hair all around the back and sides... she had one > tuft > > of hair twords the top back part of her head. Also, now where her > > soft spot was, is raised a little... does this sound familiar at > all? > > > > Also, how common is this syndrome? Anyone have percentages? > > > > And, I am not able to view the pictures... I keep getting an > error. > > Any tips? > > > > Thanks so much for your help! > > Kerri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 Kerri, My Liam Possible RSS will be 4 in December. He wears size 12 to 24 months in shorts... 2T in long pants and any size shirt from 2 to 5.. The bigger the better for his head. He was born at 34 weeks due to IUGR and was 4 lbs 3 oz and 16 1/2 inchs long.. He also has Sensory intergration issues and was speech delayed and has some gross motor issues. We are going to see the genetitics next week.... Mom to Liam (3 1/2 years old 34 3/4 " 27 lbs SGA / possible RSS, Hypothyriod, Epilepsy.) Started GHT 5/18/04 and Jed (11 years old) Tourettes, CAPD,SVT. SW Orlando FL Check out my group: http://health.groups.yahoo.com/group/ToddlerswEpilepsy/?yguid=174302728 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 --Kerri, I love what you wrote and all the things she is doing is right on track things will be a little more slower right now but she will make up from it!! This all sounds to familiar we went through the same things you are going through, B is in speech and OT PT and he is sensory issues to, do you brush her/ B loves it, well I would love to talk more but gotta go to bed I am going to like talking to you! Besides him being a boy sounds like her! Talk soon - In RSS- Support , " Kerri " <kerrigoff@s...> wrote: > Jodi, > > Thank you so much for the nice reply... everyone has been so great. > > We tested negative for UPD... but the Gen Doc never mentioned RRS... > That was a couple of years ago. We are lucky. Shea has never been > malnourished. She has always been able to eat enough to grow on her > own little curve. She is just a small petite thing. She is going to > be 4 in Dec. and is in 18 months to 2 T sizes... Our biggest issues > have been her gross and fine motor skills. She did not walk until > she was 23 months and is still not potty trained. Her speech is > coming along but it is also a bit delayed. She also has some sensory > intergration issues. She is very sensitive to her environment. She > has been in early on and will now be starting their preschool program > which is 5 days a week. She is very bright... knows her alaphabet > and can recgonice numbers 1-10 and can count to 20. She loves to > sing and dance. She is very sweet and beautiful. At times I think I > did not want to know if she had something wrong or not... but now, I > am ready to face it full on... I need to know all I can about her so > that I can help her now and in the future.. > > Thanks again, > Kerri > > > > > > Ok, I have more questions... Did any of you have problems with > the > > > umbilical cord and placenta during pregnancy? We had a two > vessel > > > cord and velementous (sp?) insertion of the cord. Also, did any > of > > > your kids have single hair tufts on their heads? Shea was bald > on > > > top with dark hair all around the back and sides... she had one > > tuft > > > of hair twords the top back part of her head. Also, now where > her > > > soft spot was, is raised a little... does this sound familiar at > > all? > > > > > > Also, how common is this syndrome? Anyone have percentages? > > > > > > And, I am not able to view the pictures... I keep getting an > > error. > > > Any tips? > > > > > > Thanks so much for your help! > > > Kerri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 Hi Kerri, My son is 4 1/2 and still wears size 2T (with the occasional size 3). He just (in the last 2 weeks) potty trained. He has a feeding tube but does also eat orally. He started GHT (growth hormone therapy) in January and is now growing at a rate of 4 inches/year (w/o GHT he was growing at a rate of 2 inches/year). Good luck, Judith, Steve, (RSS) and (non RSS) 4 1/2 year old twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 hi kerri!!! when is her birthday? my christopher's is dec 15 and he will also be 4!! he has always eaten pretty well too and has his own little curve going on the chart!!! they are in the same size clothes as well!!! jodie c. - In RSS-Support , " Kerri " <kerrigoff@s...> wrote: > Jodi, > > Thank you so much for the nice reply... everyone has been so great. > > We tested negative for UPD... but the Gen Doc never mentioned RRS... > That was a couple of years ago. We are lucky. Shea has never been > malnourished. She has always been able to eat enough to grow on her > own little curve. She is just a small petite thing. She is going to > be 4 in Dec. and is in 18 months to 2 T sizes... Our biggest issues > have been her gross and fine motor skills. She did not walk until > she was 23 months and is still not potty trained. Her speech is > coming along but it is also a bit delayed. She also has some sensory > intergration issues. She is very sensitive to her environment. She > has been in early on and will now be starting their preschool program > which is 5 days a week. She is very bright... knows her alaphabet > and can recgonice numbers 1-10 and can count to 20. She loves to > sing and dance. She is very sweet and beautiful. At times I think I > did not want to know if she had something wrong or not... but now, I > am ready to face it full on... I need to know all I can about her so > that I can help her now and in the future.. > > Thanks again, > Kerri > > > > > > Ok, I have more questions... Did any of you have problems with > the > > > umbilical cord and placenta during pregnancy? We had a two > vessel > > > cord and velementous (sp?) insertion of the cord. Also, did any > of > > > your kids have single hair tufts on their heads? Shea was bald > on > > > top with dark hair all around the back and sides... she had one > > tuft > > > of hair twords the top back part of her head. Also, now where > her > > > soft spot was, is raised a little... does this sound familiar at > > all? > > > > > > Also, how common is this syndrome? Anyone have percentages? > > > > > > And, I am not able to view the pictures... I keep getting an > > error. > > > Any tips? > > > > > > Thanks so much for your help! > > > Kerri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 <<when is her birthday? my christopher's is dec 15>> Liam is Dec. 12 and he will be 4 too... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2004 Report Share Posted September 8, 2004 hey laura!! thats cool!!! i think jordans birthday is that day too, did i remember right leslie? jodie c. > <<when is her birthday? my christopher's is dec 15>> > > Liam is Dec. 12 and he will be 4 too... > > Quote Link to comment Share on other sites More sharing options...
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