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Received E-mails

In this section, you will find the e-mails received from the families of kids with Weaver Syndrome. Names and some sections were removed due to the privacy issues.


5/28/2004,

   My 2 1/2 years old great grandson has been diagnosed with Weaver Syndrome. He is sharp as a tack, extremely observant, speaks very well. However, we aren't sure if it's just the "terrible twos" or if he has an anger, destructive, violent reaction to certain events or if it is his Weaver's. What type of medication controls growth? Thanks for any help.

12/19/2004,

   My grandson is 4 years old and he has been diagnosed with Weaver Syndrome. He is tall for his age and looks so much like the girl discribed in the article. I would be interested in exchanging information. Please write.

1/3/2005,

   Hi. My 3 years old son was diagnosed with Weaver Syndrome about 8 months ago. I have been looking for all the info I can. Now I'm looking for another "Weaver" family to talk to, along with any new info that there might be. I cannot receive e-mails, so please write or call me.

1/6/2005,

   My grandson is 4 years old and 4 feet tall. He's been diagosed as slightly autistic. He seems to be smart, meaning that he's not retarded. He doesn't live with my son. He lives with his mom. I think he looks like the girl, but he may not be as big. He has not been treated for being large but is in a special program for autistic pre-schoolers.

1/8/2005,

   It was good to hear from you. My husband is a mathematical statistician and I work with special education students as an aide. My grandson is intelligent but is mildly autistic which makes him shy and he spoke late. His dad is my son. I will send a picture of him soon and you will see how much your daughter and my grandson look similar. He is 4 years old and 4 feet tall. We want to get him rechecked at a medical facility, but some things have prevented that from happening yet.

1/12/2005,

   Have you or your parents noticed wheater Rumeysa has a lack of muscle tone or mass? It seems that when I touch my grandson's skin that I am touching bones and that there is not really any muscle tone.

1/14/2005,

   He has walked since he was about 15 months old. His doctors first said that they didn't think he would walk; or if he did walk, not until he was 5 years old. He has had physical therapy right from the start. He attended a very good school program for kids with physical and emotional disabilities. He is now in a school program for children with autism. I am hoping that his parent's take him back to the hospital where he was diagnosed. They are both really busy now. What needs to be done next is to measure his growth plate to see how close he is to finishing his growth. From that procedure, I think that the doctor can estimate how much growth is left. How tall was Rumeysa when she was 4 1/2 years old? At what age did most of her growth take place? If you send her measurements in centimeters, I can convert them.

1/15/2005,

   I have a 3 years old son who was diagnosed with Weaver Syndrome about 9 months ago. I would like to chat with all the families of kids with Weaver Syndrome if that could be possible. I know this is a real rare disease, but I would like to know how the people with Weaver Syndrome and their families are doing and what all they have been through. My son also seems to have a lot of major health issues, is this common with anyone else?

1/21/2005,

   Since my daughter was diagnosed with an ovarian cyst, a friend suggested that I look up Weaver Syndrome.

   She is 13, and 5 foot 8 inches. She's always been a big girl. She's been diagnosed with Semantic Pragmatic Disorder and Inadequate focus. She's had motor skills "issues" and has some problems with speech and social skills. She's had surgery for decalcified teeth, umbilical hernia, and 2nd rupture of her appendix (very low sense of pain).

   Is there anyway to confirm this and what else can I expect? Is there anyone in particular that is studying this that I should ask?

   Thank you.

1/30/2005,

   Thank you for answering at all. I really appreciate your time. She does not have the skeletal aspect, but her head is 24 inches and she's already had 3 surgeries. So, although Weaver Syndrome is not the best answer - it's the best since we learned about autism.

   I will let you know if I can find anyone studying Weaver Syndrome. Please keep in touch about your daughter. To me, she's beautiful, and I appreciate you taking the time to answer mail and have a website. It was a nice change of pace from reading the doctor's notes.

2/7/2005,

   I have a son with Weaver Syndrome. He is now almost 3 and was diagnosed at 14 months old. If you have any questions e-mail me and I will try really hard to answer them. But I can give you one piece of advice now therapy works wonders my son receives pt ot and st. Please e-mail me back so we can chat.

2/7/2005,

   My son is 3 years old. He was diagnosed with Weaver Syndrome when he was 9 months. He is not overgrown. He actually is small in about the 5% for growth. But does have charistics of Weaver's. When he was born he couldn't breath so a trach was put in which he still has. He is also on a ventalater for 6 hours a day and is feed through a tube. Have you heard other sever cases of weaver? He was diagnosed from a genetisist who seems like she knows what she is talking about. He gets pt he needs speech. We are playing a waiting game.

11/27/2005,

   Hi. I'm enrolled in the physical therapy program. I am writing to you because I am in need of information regarding Weaver Syndrome and its related factors concerning physical therapy. I would love your reply on some questions that I have about it. As you know, there are a limited information on Weaver Syndrome and its affects so I would greatly appreciate your assistance. Here are some of the questions that I have about the course of Weaver Syndrome in a lifetime. I hope I can help in increasing the awareness of this syndrome and other genetic conditions...

   What are some of the long term effects of people with Weaver Syndrome?

   What is the likely outcome of a course of physical therapy or your experiences with PT?

   What is the most effective management for this syndrome, such as, are there programs that address kids who are suffering from this syndrome or adult who have this syndrome and living independently?

   What are some of the home care regimen should be recommended, especially for increasing the development of someone with Weaver Syndrome?

6/29/2006,

   I am writing to you because I found your page on the web and because my daughter, who is now almost 3 years old, was recently diagnosed with Weaver Syndrome. I am interested in contacting anybody who may be able to tell me more about this as the doctors here in Scotland cannot give us much information. They say there are only 3 or 4 people in the country who have this rare condition. I attach a photo of her. I would love to hear from you.

7/29/2006,

   Thank you very much for replying. I thought maybe you could no longer be contacted. It is very good to be able to share information on Weaver's as it seems the doctors don't know much about it yet. I am sure all cases are different, but you can give me some idea of what to expect. You are the first person I have managed to contact about the syndrome so I am very pleased to have the opportunity to write to you. I'm sorry I don't know any Turkish. My daughter is almost three years old. Her height and weight are well above average - she is the size of a five or six year old. She has difficulties with coordination, although she walks quite well, and her speech is delayed by about a year. I wondered if I could ask you about the things that concern me most:

   1) height - you say that your daughter has now stopped growing. Was there medical intervention to bring on puberty early? Do you know if your daughter's height is higher than average for girls with Weaver's?

   2) teeth - has your daughter had any dental problems? (My daughter has had four teeth out already - her tooth enamel is very weak)

   3) behaviour - was she difficult as a child? Did she have tendency to aggressive tantrums? If so, did this improve with time? (My daughter is very loving and caring but also unpredictable and she can be very violent at times)

   4) mental abilities - it seems that your daughter's mental ability is now more or less normal - that is good to hear. Was she slower to speak than other children?

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