--- In WSSA@yahoogroups.com, "titycs16" <tity@...> wrote:
>
>
>
> I am Csilla from Hungary, my son, Lőrinc (2 years old) has Weaver
> syndrome, which had been diagnostised one year ago. Unfortunately we
> do not know a lot about his disease, although it would be very
> useful to know, what can we expect by schoolage and adulthood.
>
> Lőrinc's weight was 5.15 kg (11.3 lbs) and he was 62 cm (24.4 inch)
> when he was born. He is 2 years old now 20 kg (44 lbs) and 105 cm
> (41.3 inch). Organic disorder has not broken out yet, we regularly
> carry him to onkological and cardiological examinations.
>
> He has developmental delay in his moving, but - thanks to developing
> activities –he started to walk by age 15-16 months. He is walking
> well by now, but he is clubfooted and it still causes a bad sense of
> balance, his knees are trembling a little during walking.
> He is also slightly delayed mentally. I can tell, that till his 10th
> month he was compeletely passive. Then we begin special exercises of
> developing nervous system, which helped a lot to begin his moving
> and intellectually, too.
> He understands superbly our speech, but tells only two words in our
> language and four-five in his own language. His attention was very
> low at the beginning, but - thanks to the developmental training -
> he is improving a lot. He got more cooperative and his interest is
> more engaged by a few toy.
> He is very nice and devoted child, he loves to be in company,
> especially with children. He is not house-trained yet.
> I upload some photos of him.
>
> I have a lot of questions, if I could talk to someone, who knows the
> features of this syndrome and could tell me for which signs I have
> to pay attention.
>
> I have just read somewhere on this page, that somebody knows the
> mail-box of Dr. Weaver. May I write to him? Where he is living? Is
> it worth to travel to him for an examination from the other side of
> the world?
>
> What is interest me a lot:
>
> - For what can we prepare in mental respect, what kind of
> (special) school we should enrol him later? How high intelligence
> can be expected?
> - Which are the fields, where he can be more talented ( now he
> loves music, moving on it well, everything is interests him what is
> making sounds) and what are the fields, which will be more difficult
> for him?
> - What are the illnesses, which they having more often, what
> kind of examination they need regularly?
> - What kind of developments do you advice?
> (speech ,independence and question of being house-trained is actual
> momently)
> - Later we would like him to do sports. In what kind of sports
> he can be talented? (Where is not a big problem that his moving a
> bit clumsy, but his large strenght and figure can be an advantage.)
> Which is what you were trying and worked well?
> - Is there any kind of registration or database exist, where I
> can check if there any other child in Hungary or nearby who has
> Weaver syndrome?
>
> Now I am int he 12th week of my second pregnancy, we expect our
> second baby in January. Altough as I know this is a sporadical
> hereditary syndrome, after all I am worrying a little.
> Do you also know so, can't repeat itself in one family, don't you?
>
> Thanks for you kind answers, best regards,
>
> Csilla.
>
Hello My name is Danielle (Georgia USA) My son Shane has weaver's and
he is 5 years old. I would be glad to answer any questions that I can
to help you out. We learned Shane had Weavers when he was 14 months
old. Some of the test we hve to have done are for nueroblastomas
(tumors in the stomach) some children have developed them so until
they determine if it is the disorder causes them or not Dr. Weavwer
told me he would rather be safe than sorry. As for sports we play
Baseball and what we call football (no soccer) he loves both. But I
would check with the league before you enter him. I have to be as
assistant coach so I am on the field. But Shane is also has Autism
and Asthma. He has a lower IQ (tested at 78) but we are not sure what
for sure caused it. He has alot of other things going on with him. I
was suggest speech therapy if you can get it for him. Shane had to
learn sign language to learn to speech. he understood what was said
but didn't know how to respond to it. I have been to see Dr. Weaver,
we went about 2 years ago and I learned alot. He is very good about
answering questions. Well if there is anything else just let me know
and I will try to answer. Good Luck and God Bless Danielle Auvenshine