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Hello Sara, my name is April and I have a four and a half year old boy with weavers. You are not alone, trust me. Weaver Syndrome usually affects boys, I have only heard of a few Girls with it. I have talked with Dr Weaver myself, he is a wonderful man. The last time I talked with him, he said there had been several more cases, and he was going through them this summer. Meaning that after he does go through all the cases one by one, he will have a better idea of what is affected. Have you seen a genetist?(You probly have...) Your genetist has most likely sent Dr Weaver her file. From what my sons genetist (Dr J. Martin, we see her in Spokane Wa) said all postive diagnosis are second' by him. I personaly feel that after his review, we all might have more of a clue...
Have you went back and read any of the other post on here? My son has went through quite a bit. He currently has a feeding tube as well. They aslo put him on soy, and yes it did seem to settle a
lot better. He also had gastric reflux and projectile vomitting. Later we also found out by a gastric empting study that he had pyloric stenosis(the bottom muscle in the stomach wasn't working, so food went sour in his stomach, making the reflux and vomitting worse.) The doctors never seen that comming, he was huge and by text book people/kids with pyloric stenosis didn't gain weight and thrive like he did. from all the relux and stomach problems, he was also found later to be aspirating on everything! By that time he was in the Hospital most of his life with pnemonia and apnea(he would quit breathing). After the tube was in place (about 14/15 mo old) and lots of theripy his swallowing did get better. In fact he gets almost all his calorie intake by mouth!! So have hope. Maybe your daughter is lucky they caught on so soon( I'm assumming she had swallowing problems is why she has the tube) and wont have to suffer from all the damage that it could cause to swallow wrong! You
are the fisrt family I have heard of in canada. (we live about 80+/- miles from the USA/Canada border). Good luck to you and your family! God gave these special kids to us for a reason.
April, mother of Devon
(how big was she at birth?)
my personal email is ahooburg79@...
ralph_pot <ralph_pot@...> wrote:
hi. My husband and I are parents of a beautiful baby girl - the youngest of three girls
- who has been diagnosed with Weaver's. She is now 8 weeks old; the diagnosis was
given shortly after birth. I read through the postings of this site and read of only one
or two girls. (My sister has also joined the group recently, so the posting about the
niece is actually our daughter.) Is Weaver's more common in boys? We are adjusting
to life at home. Our Rachel feeds with a g-tube, and we are optimistic she will
develop the feeding skills in time. She takes soy formula - any other babies on soy?
It's been better on her system than EBM - crazy. We are not sure of the future... We
take things one day at a time. We see Rachel's diagnosis as simply that - a diagnosis
- but not a prognosis. The future is not certain; maybe that is aggravating at times,
but it can also be relieving. We are thankful there is some support for Weaver's
families, but it does seem to involve just a small group across the globe! Hope all is
well for everyone who is a part of this group and we look forward to corresponding
with other families.
Any other Canadian babies?
Is it worth meeting Dr. Weaver? We were discussing that the other night.
sara
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