Hi, my name is April and I have a 5 yr old that was diagnosed with Weaver syndrome at about 12 months old. It was very overwhelming. We where relieved to have a diagnosis, yet this diagnosis only explained his physical problems and some dev delay's. He had so much more going on that what was being explained by any information I found on weaver syndrome! I felt all alone and unsure of what the future actually held for him and my family. We have a 11 yr old and a 9 yr old as well, it has been very strenuous (?) it is hard to find words for some emotions!

I wish we could all hold a conference, bring pictures of all ages and stages, compare, find out for ourselves what is really going on. I have found a couple moms on here that their child affected by weaver syndrome are very close to what my son has or is going through. For instance, all the other diagnosis that are coming with him. Autism, heart problems, lung problems, allergies, sinus problems, dev delays, gastric problems, ear problems, digestive problems, muscle tone, sensory issues, teeth problems,walking, talking the list goes on and on and on! I think this syndrome has not been researched enough, I feel a need to come up with something for new parents to have to reference. It may be overwhelming, but I wish I could have had something. I need this still, as he gets older to try to prepare for him and my family!

You can ask all the questions you need to. I will be here and I'll listen. Sometimes all I need is someone who can actually relate. Tell what they have tried, etc. my email is ahooburg79@...

Hope to hear from you soon!

April

Mother of Devon DOB 10/25/01 in WA

ddauvenshine <ddauvenshine@...> wrote: