E-mail Bridge
In this section, we publish the e-mails received from the
families of kids with Weaver Syndrome. Names ans some sections were
removed in order to keep the persons confidential.
5/28/2004,
Weavers
My 2 1/2 year old great grandson has been diagnosed with
Weavers. 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 Weavers. 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's. 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,
Newly Diagnosed Weaver Syndrome Boy
Hi, My 3 yr old son was diagnosed with weaver syndrome
about 8 mo 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 recieve 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 your sister, 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,
RE: speaking
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 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,
Re:walking
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 finnishing 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,
Weaver syndrome
I have a 3 yr. old son who was diagnoses 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 any one else?
1/21/2005, Weaver's syndrome
Since my daughter was diagnosed with an ovarian cyst, a friend suggested
that I look up Weaver's 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, Re: Weaver's syndrome
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's 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's. Please keep in
touch about your sister. 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,
Re: Weaver syndrome
I have a son with Weavers. He is now almost 3 and was
diagnoised at 14 mths old If you have any questions email me and I will
try really hard to answer them. But I can give you one peice of advice
now therapy works wonders my son receives pt ot and st. please email me
back so we can chat
2/7/2005,
Re: Weaver syndrome
My son is 3 yrs. He was diagnosed with weavers 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. 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. Were
playing a waiting game.
11/27/2005, Information on Weaver syndrome
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,
weaver syndrome
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 informatioin. 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,
Re: weaver syndrome
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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