Guest guest Posted April 29, 2004 Report Share Posted April 29, 2004 --Mimi Where in Texas are you? We are in San , and there are other members from Austin and Dallas. BTW, my daughter's birth story is very similar to yours, she was born c-section at 36 weeks due to breech position, at 3-15 and 15.5 inches, she was thought to have skeletal dysplasia (achondroplasia most likely) before birth because her limbs were more behind than rest of body, but that was ruled out day she was born by the geneticist. She has seen 3 geneticist but no diagnosis they all say she is not RSS. Sabina mother of Naomi - In RSS-Support , " fairiegirl98 " wrote: > Alison- > > Thanks for your response. About 1 month ago my doc told me that he > could skip one of the night feedings...so 6 hours in between. What > are signs of hypoglycemia? He is now wanting to eat every 2 hours > (hitting a growth spurt I think!;O). I am breastfeeding and > supplementing with bottles of breastmilk + Enfamil Enfacare Lipil > (1/2 teaspoon per 100 cc's). I will start making sure to wake him up > for the night feeding. I am in Texas so the doc you suggested is > pretty far..the contact info you mentioned would be great! Your > encouragement means alot to me..it is nice to know that I am not > alone! > > Thanks again- > > Mimi > > > > > > > > > > > I am a new mom and a new member. My son was born on 1-19-04 and > he > > > weighed 4 lbs 12 oz and was 15 " long. My pregnancy was normal, > and > > > the OB predicted an 8 lb baby! He was breech so the day after my > c- > > > section the doc came in and told me that he had problems and was > > > handing my " case " over to a neonatologist. He suspected > > > Achondroplasia, and told me that my son had " dysmorphic > features " > > > that needed to be looked at so he sent us to a genetic > counseling > > > session in March. She diagnosed probable -Silver and > wants > > us > > > to come back in September. On top of the RSS, he was born with > > > congenital hypothyroidism so we get blood work every month and > see > > > an endocrinologist. My pediatrician pulled out a book and showed > > > pictures of kids with RSS but doesn't seem very knowledgeable on > > the > > > condition..are there specialists out there? I am having a hard > > time > > > coping with my son's problems and I would really appreciate any > > > advice or insight you might have. > > > > > > Thanks so much- > > > Mimi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2004 Report Share Posted April 29, 2004 --Mimi I am also in Texas. ville to be exact. We travel to Cook's Children's in Fort Worth. A decent endo is Dr. , but even so the doctors here just don't know as much about RSS as Dr. Harbison in NY does. But they are caring and good. Our genetics doc is Dr. Kukalidge (Not sure I spelled that right). The endo is most important for treatment. We also see Dr. Hunt for Gastroenterology (tummy) she is great! We really like her. If your near by let me know. I would be happy to talk to you by phone if you like! Let me know and I will send you my number! My little guy (Storm) was born by c-section for fear of some problems, due to his small size and he was 4 lbs. 5 oz and 16.5 " long. He actually lost to just under 4 pounds and had some blood sugar problems. (We had no idea that it was hypoglycemia at the time). He was diagnosed at 10 months by a geneticist in South Carolina just before we moved home to Texas. We are members of the MAGIC foundation and have learned more about RSS from them than from anywhere else. It has been a difficult journey at times, but I wouldn't trade Storm for anyone! Blessings, Carmen, Mom to Paisley age 11 non-RSS and Storm (RSS) age 8y 8m, 48 " tall and 52 pounds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2004 Report Share Posted April 29, 2004 What a small world! I live in Watauga (mid-cities area). Isaac's endo is Dr. WIllcutts (he is part of Dr. 's group) and the gentics Dr. is Dr. Kuckolich (she likes ducks huh!!). Wow, I am very excited..the Cooks Docs are great. I have been trying to look up stuff on the MAGIC website..it seems to look very helpful! Thanks for all of the great reponses..I am blessed to have found this place!! Mimi - In RSS-Support , " Carmen Snyder " wrote: > --Mimi > I am also in Texas. ville to be exact. We travel to Cook's > Children's in Fort Worth. A decent endo is Dr. , but even so the > doctors here just don't know as much about RSS as Dr. Harbison in NY > does. But they are caring and good. Our genetics doc is Dr. Kukalidge > (Not sure I spelled that right). The endo is most important for > treatment. We also see Dr. Hunt for Gastroenterology (tummy) she is > great! We really like her. If your near by let me know. I would be > happy to talk to you by phone if you like! Let me know and I will > send you my number! > My little guy (Storm) was born by c-section for fear of some > problems, due to his small size and he was 4 lbs. 5 oz and 16.5 " long. > He actually lost to just under 4 pounds and had some blood sugar > problems. (We had no idea that it was hypoglycemia at the time). > He was diagnosed at 10 months by a geneticist in South Carolina just > before we moved home to Texas. > We are members of the MAGIC foundation and have learned more about > RSS from them than from anywhere else. It has been a difficult > journey at times, but I wouldn't trade Storm for anyone! > Blessings, > Carmen, Mom to Paisley age 11 non-RSS and Storm (RSS) age 8y 8m, > 48 " tall and 52 pounds Quote Link to comment Share on other sites More sharing options...
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