Hi there, yes yes yes!!! As I have said before, I think once Dr Weaver does more research on all the new cases, he will find that there are several other side affects that are affecting these kids! My son has a g-tube, but it was not places until he was a little over 1 yr in age. We went through a lot before that. He had severe reflux. He was  put on Zantac, then Prevacid ( that med helps heal the damage that was already done) and regland(that helps the stomach digest food/formula faster), then it was found that he had pyloric stenosis(bottom stomach muscle wasn't working) so when he had his g tube put in, he also had a fundo-plycation(wrapping of the top of his stomach so that he could not reflux) and a pylo-plasy( bottom stomach muscle worked on to make it empty faster so food would not curdle and cause reflux). Another thing to "watch out" for is aspiration! With weaver kids, you will find, that they have decreased muscle tone and coordination. With my son, all the reflux was going up and then down into his lungs. called aspiration. This was all so scary for us and my poor little guy was so sick for his first year in life, almost loosing him several times. He was not diagnoses with weavers until he was almost two. All his doctors didn't think he could have that severe of reflux or his stomach muscle not working because he was growing so fast. They said if he wasn't getting the nutrition that he needed he would not be growing so fast...little did they know then! He sees about 11 specialist and pt/ot/st every week and has since he was 10 months of age. This is all so scary, believe me I know. But I want other weaver parents to be aware of this stuff so that maybe they and the Dr's can have a heads up and the little ones not to have to go through as much as my little one.

Keep your head up, you are already doing much better than my family because of the early diagnosis. Hopefully you have really good Dr's that will communicate with other Dr's who have weaver kids. Most of what my son went through was not a characteristic of this syndrome, but I really think it is! Just not enough research has been done to say that 50% of the kids have this, or it is a high possibility for these kids to develop this, I hope you know what I mean.

I have talked with my little ones main pediatrician, and she has said that if any other physicians want to talk to her re weaver syndrome and what Devon(my little one) has went through(chances are that other weaver kids have gone through will go through) she would be more that willing.  I hope this comforts you and does not scare you. When my son was diagnoses, it seamed that no other weaver kids were affected the way mine was. It was thought that he also had several other "syndromes" affecting him because none of what he was going through was listed as side affects or problems. He has seen several other geneticist and they all agree with weaver, they said it is hard enough diagnosing one rare conditions, two might be impossible until the future. Hope this has helped.

April in Washington

Mother of Devon 4 1/2 yrs old

 

ralph_pot <ralph_pot@...> wrote: