Hello, I remember Maura, or hearing about her. My son, Devon, will be 6 in October. Much of what you say about walking sounds familiar. Devon held his arm(left) held up when he did start waking. He started right about your daughters age now. It will come, just latter, as you have probably noticed about all the other milestones as well. Devon is a little over two years behind developmentally. I have mentioned another site for overgrowth children. It is actually for Soto's syndrome. Soto's syndrome is very close to weavers, many of the same problems, the main difference if facial features from my understanding. Soto's is said to have a long narrow face, while weaver kids are thought to have a rounder, fuller face. I am not so sure about that, because it seems my son has a long round face. He does not have any body fat, but is rather lean,

I had to chuckle to myself when I  real your little girl being 50 LBS. Devon has always been big, now at almost 6 he weighs 80 lbs wears a size 5 1/2 shoe in men's, but has to be special made because of the width. I have a 12 yr old son as well, and Devon is not much smaller than he is, actually, Devon's hands are bigger and their feet are the same size, except Devon's feet are so wide.

I am curios about the heart issues your daughter has or had. Devon was found to have a ASD/PFO when he was about 2 yrs old. Cardiologist thought it would close on its own, but the pulmonologist says that is what she thinks is causing the breathing problems. Last week he did a holter monitor for 48 hours, and I am waiting for the results. He had an EKG(?) a couple Week ago, and said the QT line was delayed. I am waiting for this doctors thoughts, the pulmonologist wants us to travel across state to go see another children's hospital and their specialists. I hate thing game!!!!

I swore I would tell every mother I found to keep track. What I mean by this is, start a journal. Go back to all you can remember about the pregnancy(in my case it was horrible!!!) and all the little things you remember. I have heard from older kids moms that you will need all this info for several things (like, SSI when the kids turn 18) and they want dates. I did not understand, because I thought all these surgeries where etched in my mind forever, but they do end up running together. Devon has had over 33 surgeries and procedures.

Does your daughter have sinus or ear issues? Devon does, and he severe allergies too.

If you do not mind, what kind of insurance do you have for Maura? Devon is on SSI/medicaid(state medical) and when the child turns three they will buy diapers/pull-ups. Devon is currently in a depend type pull up and they fit okay. We did have several different types sent to us, and choose the one that fit best. What kind of specialist does your daughter see? Devon has a list, although it is getting a bit better as he gets older!

I hope to hear from you soon, look up Soto's syndrome  in the google tool bar and look for the support  group site, and follow it, there are hundreds on this web site!! Soto's has about 650 diagnosed, while weaver only has about 40sh!!!

lots of luv

April

mother of Devon almost 6

in Washington USA

kakane13 <foodykane@hotmail.com> wrote:

Hello! I have posted before but it's been a long time. My daughter
Maura was diagnosed with Weaver's when she was 15 months old. She is
now 2 1/2 and is 50 pounds. She has had heart surgery and is in
remission from neuroblastoma. I know that there are other cases of
neuroblastoma in Weavers and was curious if any of the members have
children that have had it. Maura also has issues with the way her
brain developed and doesn't properly move her left side and currently
doesn't walk. We have made a lot of progress and see her possibly
walking someday. Since she doesn't walk she obviously isn't close to
potty training. Pampers recently started making a size 7 diaper
(cheapest place to find it is on www.amazon.com) but I don't know how
much longer she'll be in it. We were told at the doctors that the
smallest depends was her option, I was curious if anyone else knew of
any other options of diapers. I also saw in one of the email strings
that there are other support groups of other overgrowth syndromes,
and was curious where these were.

I agree with one of the posts, I wish more people posted. I feel
like I'm on an island with Maura's issues and would love to chat more
with people who understood.

Hope to start a chat!
Hugs and prayers,
Kate and Maura (North Carolina)

---

Shape Yahoo! in your own image. Join our Network Research Panel today!

Hello! I have posted before but it's been a long time. My daughter
Maura was diagnosed with Weaver's when she was 15 months old. She is
now 2 1/2 and is 50 pounds. She has had heart surgery and is in
remission from neuroblastoma. I know that there are other cases of
neuroblastoma in Weavers and was curious if any of the members have
children that have had it. Maura also has issues with the way her
brain developed and doesn't properly move her left side and currently
doesn't walk. We have made a lot of progress and see her possibly
walking someday. Since she doesn't walk she obviously isn't close to
potty training. Pampers recently started making a size 7 diaper
(cheapest place to find it is on www.amazon.com) but I don't know how
much longer she'll be in it. We were told at the doctors that the
smallest depends was her option, I was curious if anyone else knew of
any other options of diapers. I also saw in one of the email strings
that there are other support groups of other overgrowth syndromes,
and was curious where these were.

I agree with one of the posts, I wish more people posted. I feel
like I'm on an island with Maura's issues and would love to chat more
with people who understood.

Hope to start a chat!
Hugs and prayers,
Kate and Maura (North Carolina)

Hello!  I have posted before but it's been a long time.  My daughter
Maura was diagnosed with Weaver's when she was 15 months old.  She is
now 2 1/2 and is 50 pounds.  She has had heart surgery and is in
remission from neuroblastoma.  I know that there are other cases of
neuroblastoma in Weavers and was curious if any of the members have
children that have had it.  Maura also has issues with the way her
brain developed and doesn't properly move her left side and currently
doesn't walk.  We have made a lot of progress and see her possibly
walking someday.  Since she doesn't walk she obviously isn't close to
potty training.  Pampers recently started making a size 7 diaper
(cheapest place to find it is on www.amazon.com) but I don't know how
much longer she'll be in it.  We were told at the doctors that the
smallest depends was her option, I was curious if anyone else knew of
any other options of diapers.  I also saw in one of the email strings
that there are other support groups of other overgrowth syndromes,
and was curious where these were.

I agree with one of the posts, I wish more people posted.  I feel
like I'm on an island with Maura's issues and would love to chat more
with people who understood.

Hope to start a chat!
Hugs and prayers,
Kate and Maura (North Carolina)

--

Hi April!

Nathan is six now and he is in aged 10yr old clothes and in a size 3
shoe (correct me if Im wrong but I think our shoe sizes differ
slightly from yours in the US) well put it this way Im in a size 5/6
depending on the shoe! however Nathan still does not eat correctly, we
are lucky if we get 1 meal a day down him, which I believe is a little
usual for this syndrome! I put it down to the fact he chocked so much
as a baby and a toddler he is not as bad now its gone from every meal
time to about once every 2 or 3 days, but he is still on 'mushy' foods
like strew soup mashed potato etc in fact he has been referred to see
  a food specialized to access him (I really do think its me and Paul
who need the  retraining in this instance!)

Nathan is not to bad on the toilet training yet when he involes
himself in something he does have a tendency to wet himself however
this doesn't happen to often

As for his sleep patterns again much improved since he started school,
when he was smaller he was given medicine to help him sleep or should
I say to keep him asleep

So how do you and husband feel about the prospect of him having to
give his job up to help look after Devon? I think if I was you  I
would feel a little relieved and worried too?

What do you mean when you talk about Devon's aggressive behaviour ,
how does it manifest it self

Cant wait to hear from you ,,, Take care both of you



Regards...........  Sandy   xxxx












- In WSSA@yahoogroups.com, April Hooper <ahooburg79@...> wrote:
>
> It probably will not be long until Devon's father has to stay at
home with him. He is getting so big and with the aggressive
behaviors....it scares me.
>   One thing I forget to ask is how is Nathan doing with toilet
training? Devon is doing OK most of the time, he still has accidents
frequently and he wears pull up type things at night. Did I mention we
got a weighted blanket? It really has done wonders!! It weights about
11-13 lbs and is a bit bigger than a baby blanket, but it helps with
tantrums and sensory issues. I found that when he starts getting mad
and can catch himself he will get it and hide under it. It cost
$200.00, but I am sure if you know of anyone who sows, they could make
one. It is made with flat marbles/rocks.
>   How big is Nathan now?
>   How horrible for your family! they did not come out and let you
know that is was going to be more than you expected? I would be upset
too, poor child!
>   Devon still has many of the autistic traits, but he is doing better!
>   Hope to hear from you soon, best wishes to your whole family!!!
>   April
>
> Sandy <znandra40@...> wrote:
>           ---
>
> O my goodness April it s like I'm reading all about Nathan! No really
> I swear its so amazing, Nathan had been under the care of a very good
> dentist who worked the kids with special and additional needs, she
> reported to us Nathan had 2 cavities and because they were starting to
> get loose she referred him to our local children's hospital to have
> them taken out as Nathan wouldn't tolerated her working in his mouth.
> So about 4 or 5 weeks ago Nathan was admitted as a day case to be put
> to sleep under local an acetic …April they took 7/8 teeth out claiming
> that in 12 or 18 months they may! Give him some trouble! I was so
> upset and the night that followed had to be one the worst nights I
> have ever experienced he wouldn't stop bleeding he vomited blood
> several times through out the night, Nathan is fine now but 4 of those
> teeth were fine and I was rather stunned by the whole thing.
>
> Our genetics' doctor ask us how is Nathans heart and I suppose
> because he has never had blue lips etc I'm happy to report that he
> doesn't appear to any problem in that area (apart from he was younger
> he would sweat so much until his hair was wet!) And he would be only
> playing with usual things, no running around or anything like that!
>
> Its Nathans behaviour I consider to be Nathans biggest disability he
> displays many `autistic traits' still a lot have improved as he has
> matured yet he is still very obsessive about things or people and god
> forbid if he looses a game or something he goes hysterical. Do you
> know I could go on and on
>
> I still work full time I have changed my job, I now work as a
> receptionist, but I truly mean this when I say all the credit is
> Paul's, as he is at home all day with all the kids (Paul works several
> nights a week as a doorman) plus he has 3 kids from his ex wife and
> they visit every day ! I have the easy option and I do respect Paul's
> patients and organisation skills he does a wonderful job
>
> well its getting late, I cant wait untill we talk some more take care
> my love to you both!
>
> With Kind regards....... Sandy xxxx
>
> In WSSA@yahoogroups.com, April Hooper <ahooburg79@> wrote:
> >
> > Yes I do remember about Rebeca, how is she doing, besides scared of
> dogs now? Scaring on the face for a girl is horrible. How old is she?
> A nice setting for your house, but I guess it comes with problems.
> > Devon has lost 10 teeth now! Eight up front and two molars in the
> back. He had a dental procedure done in June, they put him to sleep
> and fixed his teeth. I was so mad actually! His dentist of years said
> he was fine, no cavities no problems. I was wondering how he came to
> this conclusion, since Devon fights anything going into his mouth,
> with the exception of food. The last visit to that dentist was horrid.
> He started loosing teeth, so I called another dentist known for
> working with kids with special needs. On the first visit, he made a
> date for the hospital. Devon had several cavities and a tooth decaying
> even more because of his grinding teeth. He grinds when eating or
> sleeping. But he is fine now, teeth are all capped and sealed, so
> hopefully it continues this way.
> > Devon is seeing a heart specialist again. He just had a holter
> monitor on for 48 hours, I am hoping to hear the news late this week
> or next week. He has a PFO(common whole in his heart), and a EKG that
> came back abnormal. I thought it was going to be the whole causing
> problems, but it turns out some line called the QT line in the EKG was
> abnormal. He also has a abnormal heart rhythm???? His therapist found
> that after going from calm to three big jumps, his oxygen level goes
> to 88%+ and his heart rate jumps to 160, so asthma Dr said it has to
> be his heart?
> > He was also seeing an allergy/asthma specialist. He is now on
> advair too. We found that he is an IGE builder, so is allergic to
> everything.... The specialist figured it was something to do with his
> genetic makeup and his syndrome. I sure know what you mean about Dr's
> not knowing much! To me it seems like they excuse so much and think it
> is part of his syndrome. errr.
> > Devon is now 4'2"(maybe a hair taller now)and about 75-80 lbs. How
> big is Nathan now? Devon cannot wait for school to start, he goes to
> kindergarten this year. School starts September 6th.
> > We got in a couple new therapies for him that I want to share with
> you. First, this is his second year in hippo therapy (horse back
> riding) it is only a three week course, twice a week, but his gait has
> improved so much from it. I recommend you looking into this for
> Nathan. Next is swimming therapy. This is great,I cannot say enough
> about this. He has gained so much confidence in doing something all by
> himself! His therapist said he has no fat, so he is actually learning
> to swim(he does not float! LOL) She also said that with his lean
> muscles and long bones he could be a great swimmer, even said in the
> next couple years to think about interring him in the special
Olympics!!!!
> > How is work going? Last I remember you worked full time? I don't
> know how you do it!!! I go crazy at home, but I really don't think
> working is an option for me right now, hopefully soon, with Devon
> going to school, maybe even full time this year!! We are still having
> to stay under the income levels for state medical to qualify.
> > Devon is making improvements, we have been seeing a behavior
> specialist, so some things have gotten easier with him, how is Nathan
> behavior? I still consider behavior the worst in his condition. The
> more he learns to talk and pronounce things right the better his
> behavior gets. Plus we upped his meds, he is on abilify and clonidine,
> any change is meds for Nathan?
> > It is SO good talking with you!!! Hope to hear from you soon!
> > April
> >
> > Sandy <znandra40@> wrote:
> > --- In WSSA@yahoogroups.com, April Hooper <ahooburg79@> wrote:
> > >
> >
> > April Hi...Of course I remember you! Its so encouraging to hear Devon
> > is doing soooo well! Devon had his fair share of problems I recall and
> > its great news to hear he is doing so well. and you, how are you doing
> > April? I can relate to the 'new obstacles' thing Nathan seizures have
> > almost gone(fingers crossed) its been a good 18m since we last
> > witnessed one!
> >
> > The thing with Weaver Syndrome because it is such a rare disorder we
> > never can know or predict what to expect in the future for our
> > children and nor can anyone else all health professionals included! so
> > what I tend (or should I say TRY and do) is expect the best of Nathan
> > (in a realistic term) and you know he always manages to live up to our
> > expectations, it may take longer but he get there
> >
> > I regret my absence from this group but I dont know if you recall my
> > daughter Rebecca was at the time attack by a big dog while playing in
> > the park! (our house is actually situated just inside this park) it
> > has left her scared on the side of her face and head but at the time
> > our family just fell apart it was like you cope with so much with our
> > 'Weaver' kids that this incident with Rebecca seems to my our family
> > crumble...it has taken a while but we managed to pull every thing back
> > together.
> >
> > once again April thank you for your reply it has truly made my day!
> > hope to talk to you again really soon all my love
> >
> > Sandy & Nathan
> >
> > > Hi Sandy!!! How are things going? It has been a long long time! Do
> > you remember me? My son's name is Devon and he will be six October
> > 25th. Devon is doing OK. I'm sure he has made lots of progress since
> > we spoke last, but new obstacles keep coming. We finally got him over
> > the (for the most part) sensory dysfunction, he takes baths now
> > voluntarily, keeps seat belts on etc, it is nice!
> > > I hope to hear from you soon, it is good hearing from you again
> > after so long! I have talked with a care giver from the UK taking care
> > of a child with weaver syndrome, maybe it was two? on another site for
> > overgrowth syndromes recently too. Not a whole lot goes on in this
> > one, I wish more parents talked openly on here, this is a support
> > group for our kids!
> > >
> > > Best wishes!
> > > April from WA, USA
> > >
> > > Sandy <znandra40@> wrote:
> > >
> > >
> > > Its been a long time since I was last a visitor here in this lovely
> > > group!
> > >
> > > Hi to everyone.....My name is Sandy, my son Nathan was diagnosed
with
> > > Weaver Syndrome when he was approx 18 months old, he is 6yrs now and
> > > doing ok
> > >
> > > All I wanted to do really was introduce myself to you all and
> > > hopefully some of you might say hi back, which would be great.
> > >
> > > with kind regards
> > >
> > > Sandy
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > > ---------------------------------
> > > Got a little couch potato?
> > > Check out fun summer activities for kids.
> > >
> >
> >
> >
> >
> >
> >
> > ---------------------------------
> > Looking for a deal? Find great prices on flights and hotels with
> Yahoo! FareChase.
> >
>
>
>
>
>
>
> ---------------------------------
> Building a website is a piece of cake.
> Yahoo! Small Business gives you all the tools to get online.
>

---

O my goodness April it s like I'm reading all about Nathan! No really
I swear its so amazing, Nathan had been under the care of a very good
dentist who worked the kids with special and additional needs, she
reported to us Nathan had 2 cavities and because they were starting to
get loose she referred him to our local children's hospital to have
them taken out as Nathan wouldn't tolerated her working in his mouth.
So about 4 or 5 weeks ago Nathan was admitted as a day case to be put
to sleep under local an acetic …April they took 7/8 teeth out claiming
that in 12 or 18 months they may! Give him some trouble! I was so
upset and the night that followed had to be one the worst nights I
have ever experienced he wouldn't stop bleeding he vomited blood
several times through out the night, Nathan is fine now but 4 of those
teeth were fine and I was rather stunned by the whole thing.

Our genetics' doctor ask us how is Nathans heart and I suppose
because he has never had blue lips etc I'm happy to report that he
doesn't appear to any problem in that area (apart from he was younger
he would sweat so much until his hair was wet!) And he would be only
playing with usual things, no running around or anything like that!

Its Nathans behaviour I consider to be Nathans biggest disability he
displays many `autistic traits' still a lot have improved as he has
matured yet he is still very obsessive about things or people and god
forbid if he looses a game or something he goes hysterical. Do you
know I could go on and on

I still work full time I have changed my job, I now work as a
receptionist, but I truly mean this when I say all the credit is
Paul's, as he is at home all day with all the kids (Paul works several
nights a week as a doorman) plus he has 3 kids from his ex wife and
they visit every day ! I have the easy option and I do respect Paul's
patients and organisation skills he does a wonderful job

well its getting late, I cant wait untill we talk some more take care
my love to you both!

With Kind regards....... Sandy xxxx

In WSSA@yahoogroups.com, April Hooper <ahooburg79@...> wrote:
>
> Yes I do remember about Rebeca, how is she doing, besides scared of
dogs now? Scaring on the face for a girl is horrible. How old is she?
A nice setting for your house, but I guess it comes with problems.
> Devon has lost 10 teeth now! Eight up front and two molars in the
back. He had a dental procedure done in June, they put him to sleep
and fixed his teeth. I was so mad actually! His dentist of years said
he was fine, no cavities no problems. I was wondering how he came to
this conclusion, since Devon fights anything going into his mouth,
with the exception of food. The last visit to that dentist was horrid.
He started loosing teeth, so I called another dentist known for
working with kids with special needs. On the first visit, he made a
date for the hospital. Devon had several cavities and a tooth decaying
even more because of his grinding teeth. He grinds when eating or
sleeping. But he is fine now, teeth are all capped and sealed, so
hopefully it continues this way.
> Devon is seeing a heart specialist again. He just had a holter
monitor on for 48 hours, I am hoping to hear the news late this week
or next week. He has a PFO(common whole in his heart), and a EKG that
came back abnormal. I thought it was going to be the whole causing
problems, but it turns out some line called the QT line in the EKG was
abnormal. He also has a abnormal heart rhythm???? His therapist found
that after going from calm to three big jumps, his oxygen level goes
to 88%+ and his heart rate jumps to 160, so asthma Dr said it has to
be his heart?
> He was also seeing an allergy/asthma specialist. He is now on
advair too. We found that he is an IGE builder, so is allergic to
everything.... The specialist figured it was something to do with his
genetic makeup and his syndrome. I sure know what you mean about Dr's
not knowing much! To me it seems like they excuse so much and think it
is part of his syndrome. errr.
> Devon is now 4'2"(maybe a hair taller now)and about 75-80 lbs. How
big is Nathan now? Devon cannot wait for school to start, he goes to
kindergarten this year. School starts September 6th.
> We got in a couple new therapies for him that I want to share with
you. First, this is his second year in hippo therapy (horse back
riding) it is only a three week course, twice a week, but his gait has
improved so much from it. I recommend you looking into this for
Nathan. Next is swimming therapy. This is great,I cannot say enough
about this. He has gained so much confidence in doing something all by
himself! His therapist said he has no fat, so he is actually learning
to swim(he does not float! LOL) She also said that with his lean
muscles and long bones he could be a great swimmer, even said in the
next couple years to think about interring him in the special Olympics!!!!
> How is work going? Last I remember you worked full time? I don't
know how you do it!!! I go crazy at home, but I really don't think
working is an option for me right now, hopefully soon, with Devon
going to school, maybe even full time this year!! We are still having
to stay under the income levels for state medical to qualify.
> Devon is making improvements, we have been seeing a behavior
specialist, so some things have gotten easier with him, how is Nathan
behavior? I still consider behavior the worst in his condition. The
more he learns to talk and pronounce things right the better his
behavior gets. Plus we upped his meds, he is on abilify and clonidine,
any change is meds for Nathan?
> It is SO good talking with you!!! Hope to hear from you soon!
> April
>
> Sandy <znandra40@...> wrote:
> --- In WSSA@yahoogroups.com, April Hooper <ahooburg79@> wrote:
> >
>
> April Hi...Of course I remember you! Its so encouraging to hear Devon
> is doing soooo well! Devon had his fair share of problems I recall and
> its great news to hear he is doing so well. and you, how are you doing
> April? I can relate to the 'new obstacles' thing Nathan seizures have
> almost gone(fingers crossed) its been a good 18m since we last
> witnessed one!
>
> The thing with Weaver Syndrome because it is such a rare disorder we
> never can know or predict what to expect in the future for our
> children and nor can anyone else all health professionals included! so
> what I tend (or should I say TRY and do) is expect the best of Nathan
> (in a realistic term) and you know he always manages to live up to our
> expectations, it may take longer but he get there
>
> I regret my absence from this group but I dont know if you recall my
> daughter Rebecca was at the time attack by a big dog while playing in
> the park! (our house is actually situated just inside this park) it
> has left her scared on the side of her face and head but at the time
> our family just fell apart it was like you cope with so much with our
> 'Weaver' kids that this incident with Rebecca seems to my our family
> crumble...it has taken a while but we managed to pull every thing back
> together.
>
> once again April thank you for your reply it has truly made my day!
> hope to talk to you again really soon all my love
>
> Sandy & Nathan
>
> > Hi Sandy!!! How are things going? It has been a long long time! Do
> you remember me? My son's name is Devon and he will be six October
> 25th. Devon is doing OK. I'm sure he has made lots of progress since
> we spoke last, but new obstacles keep coming. We finally got him over
> the (for the most part) sensory dysfunction, he takes baths now
> voluntarily, keeps seat belts on etc, it is nice!
> > I hope to hear from you soon, it is good hearing from you again
> after so long! I have talked with a care giver from the UK taking care
> of a child with weaver syndrome, maybe it was two? on another site for
> overgrowth syndromes recently too. Not a whole lot goes on in this
> one, I wish more parents talked openly on here, this is a support
> group for our kids!
> >
> > Best wishes!
> > April from WA, USA
> >
> > Sandy <znandra40@> wrote:
> >
> >
> > Its been a long time since I was last a visitor here in this lovely
> > group!
> >
> > Hi to everyone.....My name is Sandy, my son Nathan was diagnosed with
> > Weaver Syndrome when he was approx 18 months old, he is 6yrs now and
> > doing ok
> >
> > All I wanted to do really was introduce myself to you all and
> > hopefully some of you might say hi back, which would be great.
> >
> > with kind regards
> >
> > Sandy
> >
> >
> >
> >
> >
> >
> >
> > ---------------------------------
> > Got a little couch potato?
> > Check out fun summer activities for kids.
> >
>
>
>
>
>
>
> ---------------------------------
> Looking for a deal? Find great prices on flights and hotels with
Yahoo! FareChase.
>

---

O my goodness April it s like I'm reading all about Nathan! No really
I swear its so amazing,  Nathan had been under the care of a very good
dentist who worked the kids with special and additional needs, she
reported to us Nathan had 2 cavities and because they were starting to
get loose she referred him to our local children's hospital to have
them taken out as Nathan wouldn't tolerated her working in his mouth.
So about 4 or 5 weeks ago Nathan was admitted as a day case to be put
to sleep under local an acetic …April they took 7/8 teeth out claiming
that in 12 or 18 months they may! Give him some trouble! I was so
upset and the night that followed had to be one the worst nights I
have ever experienced he wouldn't stop bleeding he vomited blood
several times through out the night, Nathan is fine now but 4 of those
teeth were fine and I was rather stunned by the whole thing.

Our genetics'  doctor ask us how is Nathans heart and I suppose
because he has never had blue lips etc I'm happy to report that he
doesn't appear to any problem in that area (apart from he was younger
he would sweat so much until his hair was wet!) And he would be only
playing with usual things, no running around or anything like that!


Its Nathans behaviour I consider to be Nathans biggest disability he
displays many `autistic traits' still a lot have improved as he has
matured yet he is still very obsessive about things or people and god
forbid if he looses a game or something he goes hysterical. Do you
know I could go on and on

I still work full time I have changed my job, I now work as a
receptionist, but I truly mean this when I say all the credit is
Paul's, as he is at home all day with all the kids (Paul works several
nights a week as a doorman) plus he has 3 kids from his ex wife and
they visit every day ! I have the easy option and I do respect Paul's
patients and organisation skills he does a wonderful job

  well its getting late, I cant wait untill we talk some more take care
my love to you both!


    With Kind regards.......   Sandy xxxx





















  In WSSA@yahoogroups.com, April Hooper <ahooburg79@...> wrote:
>
> Yes I do remember about Rebeca, how is she doing, besides scared of
dogs now? Scaring on the face for a girl is horrible. How old is she?
A nice setting for your house, but I guess it comes with problems.
>   Devon has lost 10 teeth now! Eight up front and two molars in the
back. He had a dental procedure done in June, they put him to sleep
and fixed his teeth. I was so mad actually! His dentist of years said
he was fine, no cavities no problems. I was wondering how he came to
this conclusion, since Devon fights anything going into his mouth,
with the exception of food. The last visit to that dentist was horrid.
He started loosing teeth, so I called another dentist known for
working with kids with special needs. On the first visit, he made a
date for the hospital. Devon had several cavities and a tooth decaying
even more because of his grinding teeth. He grinds when eating or
sleeping. But he is fine now, teeth are all capped and sealed, so
hopefully it continues this way.
>   Devon is seeing a heart specialist again. He just had a holter
monitor on for 48 hours, I am hoping to hear the news late this week
or next week. He has a PFO(common whole in his heart), and a EKG that
came back abnormal. I thought it was going to be the whole causing
problems, but it turns out some line called the QT line in the EKG was
abnormal. He also has a abnormal heart rhythm???? His therapist found
that after going from calm to three big jumps, his oxygen level goes
to 88%+ and his heart rate jumps to 160, so asthma Dr said it has to
be his heart?
>   He was also seeing an allergy/asthma specialist. He is now on
advair too. We found that he is an IGE builder, so is allergic to
everything.... The specialist figured it was something to do with his
genetic makeup and his syndrome. I sure know what you mean about Dr's
not knowing much! To me it seems like they excuse so much and think it
is part of his syndrome. errr.
>   Devon is now 4'2"(maybe a hair taller now)and about 75-80 lbs. How
big is Nathan now? Devon cannot wait for school to start, he goes to
kindergarten this year. School starts September 6th.
>   We got in a couple new therapies for him that I want to share with
you. First, this is his second year in hippo therapy (horse back
riding) it is only a three week course, twice a week, but his gait has
improved so much from it. I recommend you looking into this for
Nathan. Next is swimming therapy. This is great,I cannot say enough
about this. He has gained so much confidence in doing something all by
himself! His therapist said he has no fat, so he is actually learning
to swim(he does not float! LOL) She also said that with his lean
muscles and long bones he could be a great swimmer, even said in the
next couple years to think about interring him in the special Olympics!!!!
>   How is work going? Last I remember you worked full time? I don't
know how you do it!!! I go crazy at home, but I really don't think
working is an option for me right now, hopefully soon, with Devon
going to school, maybe even full time this year!! We are still having
to stay under the income levels for state medical to qualify.
>   Devon is making improvements, we have been seeing a behavior
specialist, so some things have gotten easier with him, how is Nathan
behavior? I still consider behavior the worst in his condition. The
more he learns to talk and pronounce things right the better his
behavior gets. Plus we upped his meds, he is on abilify and clonidine,
any change is meds for Nathan?
>   It is SO good talking with you!!! Hope to hear from you soon!
>   April
>
> Sandy <znandra40@...> wrote:
>           --- In WSSA@yahoogroups.com, April Hooper <ahooburg79@> wrote:
> >
>
> April Hi...Of course I remember you! Its so encouraging to hear Devon
> is doing soooo well! Devon had his fair share of problems I recall and
> its great news to hear he is doing so well. and you, how are you doing
> April? I can relate to the 'new obstacles' thing Nathan seizures have
> almost gone(fingers crossed) its been a good 18m since we last
> witnessed one!
>
> The thing with Weaver Syndrome because it is such a rare disorder we
> never can know or predict what to expect in the future for our
> children and nor can anyone else all health professionals included! so
> what I tend (or should I say TRY and do) is expect the best of Nathan
> (in a realistic term) and you know he always manages to live up to our
> expectations, it may take longer but he get there
>
> I regret my absence from this group but I dont know if you recall my
> daughter Rebecca was at the time attack by a big dog while playing in
> the park! (our house is actually situated just inside this park) it
> has left her scared on the side of her face and head but at the time
> our family just fell apart it was like you cope with so much with our
> 'Weaver' kids that this incident with Rebecca seems to my our family
> crumble...it has taken a while but we managed to pull every thing back
> together.
>
> once again April thank you for your reply it has truly made my day!
> hope to talk to you again really soon all my love
>
> Sandy & Nathan
>
> > Hi Sandy!!! How are things going? It has been a long long time! Do
> you remember me? My son's name is Devon and he will be six October
> 25th. Devon is doing OK. I'm sure he has made lots of progress since
> we spoke last, but new obstacles keep coming. We finally got him over
> the (for the most part) sensory dysfunction, he takes baths now
> voluntarily, keeps seat belts on etc, it is nice!
> > I hope to hear from you soon, it is good hearing from you again
> after so long! I have talked with a care giver from the UK taking care
> of a child with weaver syndrome, maybe it was two? on another site for
> overgrowth syndromes recently too. Not a whole lot goes on in this
> one, I wish more parents talked openly on here, this is a support
> group for our kids!
> >
> > Best wishes!
> > April from WA, USA
> >
> > Sandy <znandra40@> wrote:
> >
> >
> > Its been a long time since I was last a visitor here in this lovely
> > group!
> >
> > Hi to everyone.....My name is Sandy, my son Nathan was diagnosed with
> > Weaver Syndrome when he was approx 18 months old, he is 6yrs now and
> > doing ok
> >
> > All I wanted to do really was introduce myself to you all and
> > hopefully some of you might say hi back, which would be great.
> >
> > with kind regards
> >
> > Sandy
> >
> >
> >
> >
> >
> >
> >
> > ---------------------------------
> > Got a little couch potato?
> > Check out fun summer activities for kids.
> >
>
>
>
>
>
>
> ---------------------------------
> Looking for a deal? Find great prices on flights and hotels with
Yahoo! FareChase.
>

--- In WSSA@yahoogroups.com, April Hooper <ahooburg79@...> wrote:
>

April Hi...Of course I remember you! Its so encouraging to hear Devon
is doing soooo well! Devon had his fair share of problems I recall and
its great news to hear he is doing so well. and you, how are you doing
April? I can relate to the 'new obstacles' thing Nathan seizures have
almost gone(fingers crossed) its been a good 18m since we last
witnessed one!

The thing with Weaver Syndrome because it is such a rare disorder we
never can know or predict what to expect in the future for our
children and nor can anyone else all health professionals included! so
what I tend (or should I say TRY and do) is expect the best of Nathan
(in a realistic term) and you know he always manages to live up to our
expectations, it may take longer but he get there

I regret my absence from this group but I dont know if you recall my
daughter Rebecca was at the time attack by a big dog while playing in
the park! (our house is actually situated just inside this park) it
has left her scared on the side of her face and head but at the time
our family just fell apart it was like you cope with so much with our
'Weaver' kids that this incident with Rebecca seems to my our family
crumble...it has taken a while but we managed to pull every thing back
together.

once again April thank you for your reply it has truly made my day!
hope to talk to you again really soon all my love

Sandy & Nathan

> Hi Sandy!!! How are things going? It has been a long long time! Do
you remember me? My son's name is Devon and he will be six October
25th. Devon is doing OK. I'm sure he has made lots of progress since
we spoke last, but new obstacles keep coming. We finally got him over
the (for the most part) sensory dysfunction, he takes baths now
voluntarily, keeps seat belts on etc, it is nice!
> I hope to hear from you soon, it is good hearing from you again
after so long! I have talked with a care giver from the UK taking care
of a child with weaver syndrome, maybe it was two? on another site for
overgrowth syndromes recently too. Not a whole lot goes on in this
one, I wish more parents talked openly on here, this is a support
group for our kids!
>
> Best wishes!
> April from WA, USA
>
> Sandy <znandra40@...> wrote:
>
>
> Its been a long time since I was last a visitor here in this lovely
> group!
>
> Hi to everyone.....My name is Sandy, my son Nathan was diagnosed with
> Weaver Syndrome when he was approx 18 months old, he is 6yrs now and
> doing ok
>
> All I wanted to do really was introduce myself to you all and
> hopefully some of you might say hi back, which would be great.
>
> with kind regards
>
> Sandy
>
>
>
>
>
>
>
> ---------------------------------
> Got a little couch potato?
> Check out fun summer activities for kids.
>

--- In WSSA@yahoogroups.com, April Hooper <ahooburg79@...> wrote:
>

April Hi...Of course I remember you! Its so encouraging to hear Devon
is doing soooo well! Devon had his fair share of problems I recall and
its great news to hear he is doing so well. and you, how are you doing
April? I can relate to the 'new obstacles' thing Nathan seizures have
almost gone(fingers crossed) its been a good 18m since we last
witnessed one!

The thing with Weaver Syndrome because it is such a rare disorder we
never can know or predict what to expect in the future for our
children and nor can anyone else all health professionals included! so
what I tend (or should I say TRY and do) is expect the best of Nathan
(in a realistic term) and you know he always manages to live up to our
expectations, it may take longer but he get there

I regret my absence from this group but I dont know if you recall my
daughter Rebecca was at the time attack by a big dog while playing in
the park! (our house is actually situated just inside this park) it
has left her scared on the side of her face and head but at the time
our family just fell apart it was like you cope with so much with our
'Weaver' kids that this incident with Rebecca seems to my our family
crumble...it has taken a while but we managed to pull every thing back
together.

once again April thank you for your reply it has truly made my day!
hope to talk to you again really soon     all my love



                 Sandy & Nathan










> Hi Sandy!!! How are things going? It has been a  long long time! Do
you remember me? My son's name is Devon and he will be six October
25th. Devon is doing OK. I'm sure he has made lots of progress since
we spoke last, but new obstacles keep coming. We finally got him over
the (for the most part) sensory dysfunction, he takes baths now
voluntarily, keeps seat belts on etc, it is nice!
>   I hope to hear from you soon, it is good hearing from you again
after so long! I have talked with a care giver from the UK taking care
of a child with weaver syndrome, maybe it was two? on another site for
overgrowth syndromes recently too. Not a whole lot goes on in this
one, I wish more parents talked openly on here, this is a support
group for our kids!
>
>   Best wishes!
>   April from WA, USA
>
> Sandy <znandra40@...> wrote:
>
>
> Its been a long time since I was last a visitor here in this lovely
> group!
>
> Hi to everyone.....My name is Sandy, my son Nathan was diagnosed with
> Weaver Syndrome when he was approx 18 months old, he is 6yrs now and
> doing ok
>
> All I wanted to do really was introduce myself to you all and
> hopefully some of you might say hi back, which would be great.
>
> with kind regards
>
> Sandy
>
>
>
>
>
>
>
> ---------------------------------
> Got a little couch potato?
> Check out fun summer activities for kids.
>

Its been a long time since I was last a visitor here in this lovely
group!

Hi to everyone.....My name is Sandy, my son Nathan was diagnosed with
Weaver Syndrome when he was approx 18 months old, he is 6yrs now and
doing ok

All I wanted to do really was introduce myself to you all and
hopefully some of you might say hi back, which would be great.

with kind regards

Sandy

Its been a long time since I was last a  visitor here in this lovely
group!

Hi to everyone.....My name is Sandy, my son Nathan was diagnosed with
Weaver Syndrome when he was approx 18 months old, he is 6yrs now and
doing ok

All I wanted to do really was introduce myself  to you all and
hopefully some of you might say hi back, which would be great.

    with kind regards

       Sandy

My son is 2 1/2 and was diagnosed at 8 months.  he has done pretty well over the last couple of years with all the different therapies.  He still doesn't talk, but we can communicate with him pretty well.  He is fairly aggressive and has some sensory issues that are a little challenging right now.  He is a happy boy and enjoys playing with his sister and anything that has a motor in it.  How is your son doing?  Where are you from?  We are in Portland, OR.  Do you have a good support system?  I would love to talk to you.  Hope to hear from you soon.

 

Mary

Jenny <myjenny_80@yahoo.com> wrote:

My son is 3 and was diagnosed with Weavers at an early age. We've
talked to doctors,teachers and therapists but it would be nice to talk
to another parent. Hope to hear from someone soon.

---

Moody friends. Drama queens. Your life? Nope! - their life, your story.
Play Sims Stories at Yahoo! Games.

My son is 3 and was diagnosed with Weavers at an early age. We've
talked to doctors,teachers and therapists but it would be nice to talk
to another parent. Hope to hear from someone soon.

My son is 3 and was diagnosed with Weavers at an early age. We've
talked to doctors,teachers and therapists but it would be nice to talk
to another parent. Hope to hear from someone soon.

--- In WSSA@yahoogroups.com, "ddauvenshine" <ddauvenshine@...> wrote:
>
> --- 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
>

Csilla,
I have an eight year daughter with Weaver Syndrome. She was born five
and half weeks premature with a weight of 7lbs 3oz and 21 inches long.
We were not aware of her problems until age two. She reached all the
milestone except for speech. We were told by her doctor she was just
going to talk later and her balance issues were related to her size.
When we changed doctors at age two, she was immediately evaluated and
began in speech therapy, occupational therapy, and physical therapy.
She wasn't diagnosed until almost three with Weavers syndrome. We
confirmed that diagnosis with Dr. Weaver by traveling about 5 hours to
see him in Indianapolis, Indiana, USA. He is in the genetics
department and Indiana University. He confirmed the diagnosis and
gave us what little information he had at that time, which wasn't
much. Our daughter would continue to grow at a very rapid rate and
have developmental problems both mentally and physically. We pushed
Abby very hard with constant therapy and programs for early
intervention. She would get frustrated at an young age because she
had only 3 words at the age of two. We started teaching her sign
language along with her speech therapy, she had about 35 signs in just
3 months. This decreased the frustration and she was able to convey
to us her wants. Abby also has sensory issues which is very common
with children with Weaver, according to Dr. Weaver. She would not
jump or swing or go down a slide, and hated elevators. Some noises
would bother her as well. We worked really hard in occupational
therapy and physical therapy with this. They would bounce her on top
of large balls and swing her in a sheet. Within one year she was
swinging and sliding. It took longer for the jumping. At about age
four and half she started jumping. She is now doing great. We
continued therapy in school, and modified it to help her in areas of
school. Abby tests at a low normal range for her age. She is in the
regular class half of the time and in resource room the rest. We were
able to no longer have an aide with her in school in the second grade.
She can read between a first and second grade level now, and is doing
well in all areas. She plays basketball, but still has trouble
keeping up with the kids running because of her coordination
difficulties, but she loves it anyway. She is going to try volleyball
this year. She loves art. She is very talented in drawing and
painting, so we take her to art lessons, and she has even started
selling her paintings. We saw Dr. Weaver in December 2006 in
Indianapolis. He was very impressed with how well Abby was doing.
There is no explanation as to why Abby is doing so well and other
children may not. I know that we have tried to support Abby is every
way possible by not letting her give up or make excuses for her. We
take things as they come and continue to not give up.

As far as testing goes...we went every three months for abdominal
ultrasounds, to check for tumors, until she was six. Then every six
months until now. Dr. Weaver said to continue that until she stops
growing. We also did a bone age study at the age of four to see how
fast her bones were growing. We are going to repeat that this year at
age nine. She has a scoliosis test done every year. Dr. Weaver also
requested some blood work done for a study when Abby was three and
also this past visit. They were hoping to find the gene for Weaver
syndrome, but haven't had any luck yet. Dr. Weaver is wanting to make
a data booklet this year to inform more families of what others have
experienced. He has had trouble with families and doctors not staying
in touch with him to give him information about what they are going
through. We send him all the information about Abby that we get from
other doctors and tests.

Dr. Weaver cannot tell us how tall Abby will be, but she is currently
5 feet 5 inches and weighs 116 lbs and is going to be nine is
September. Dr. Weaver cannot give us an exact height that she will
reach, but says she will stop growing during puberty and then grow
again after puberty. She also wears a size 13 in men's shoes, larger
than her father. This has caused problems in finding her shoes.

I was also worried about my second child having Weaver syndrome. Dr.
Weaver assured me there was less than a 10 percent chance that would
happen, but we got a second ultrasound at 30 weeks to check growth of
the fetus. This was normal. Dr. Weaver said Abby has a 50 percent
risk, if not greater, of having a child with Weaver if they do not
find the gene before then. I am currently 27 weeks pregnant and am
going to ask for another ultrasound at 30 weeks to check the growth of
this baby.

I think that I have hopefully answered some of your questions, but if
you have anymore please feel free to email me anytime.

Dr. Weavers email is: dweaver@iupui.edu
It may take him a short time to answer you, but he will email you back.

Let me know how you are doing.
Greta Holmes
Kentucky, USA

--- In WSSA@yahoogroups.com, "ddauvenshine" <ddauvenshine@...> wrote:
>
> --- 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
>


Csilla,
I have an eight year daughter with Weaver Syndrome.  She was born five
and half weeks premature with a weight of 7lbs 3oz and 21 inches long.
  We were not aware of her problems until age two.  She reached all the
milestone except for speech.  We were told by her doctor she was just
going to talk later and her balance issues were related to her size.
When we changed doctors at age two, she was immediately evaluated and
began in speech therapy, occupational therapy, and physical therapy.
She wasn't diagnosed until almost three with Weavers syndrome.  We
confirmed that diagnosis with Dr. Weaver by traveling about 5 hours to
see him in Indianapolis, Indiana, USA.  He is in the genetics
department and Indiana University.  He confirmed the diagnosis and
gave us what little information he had at that time, which wasn't
much.  Our daughter would continue to grow at a very rapid rate and
have developmental problems both mentally and physically.  We pushed
Abby very hard with constant therapy and programs for early
intervention.  She would get frustrated at an young age because she
had only 3 words at the age of two.  We started teaching her sign
language along with her speech therapy, she had about 35 signs in just
3 months.  This decreased the frustration and she was able to convey
to us her wants.  Abby also has sensory issues which is very common
with children with Weaver, according to Dr. Weaver.  She would not
jump or swing or go down a slide, and hated elevators.  Some noises
would bother her as well.  We worked really hard in occupational
therapy and physical therapy with this.  They would bounce her on top
of large balls and swing her in a sheet.  Within one year she was
swinging and sliding.  It took longer for the jumping.  At about age
four and half she started jumping.  She is now doing great.  We
continued therapy in school, and modified it to help her in areas of
school.  Abby tests at a low normal range for her age.  She is in the
regular class half of the time and in resource room the rest.  We were
able to no longer have an aide with her in school in the second grade.
  She can read between a first and second grade level now, and is doing
well in all areas.  She plays basketball, but still has trouble
keeping up with the kids running because of her coordination
difficulties, but she loves it anyway.  She is going to try volleyball
this year.  She loves art.  She is very talented in drawing and
painting, so we take her to art lessons, and she has even started
selling her paintings.  We saw Dr. Weaver in December 2006 in
Indianapolis.  He was very impressed with how well Abby was doing.
There is no explanation as to why Abby is doing so well and other
children may not.  I know that we have tried to support Abby is every
way possible by not letting her give up or make excuses for her.  We
take things as they come and continue to not give up.

As far as testing goes...we went every three months for abdominal
ultrasounds, to check for tumors, until she was six.  Then every six
months until now.  Dr. Weaver said to continue that until she stops
growing.  We also did a bone age study at the age of four to see how
fast her bones were growing.  We are going to repeat that this year at
age nine.  She has a scoliosis test done every year.  Dr. Weaver also
requested some blood work done for a study when Abby was three and
also this past visit.  They were hoping to find the gene for Weaver
syndrome, but haven't had any luck yet.  Dr. Weaver is wanting to make
a data booklet this year to inform more families of what others have
experienced.  He has had trouble with families and doctors not staying
in touch with him to give him information about what they are going
through.  We send him all the information about Abby that we get from
other doctors and tests.

Dr. Weaver cannot tell us how tall Abby will be, but she is currently
5 feet 5 inches and weighs 116 lbs and is going to be nine is
September.  Dr. Weaver cannot give us an exact height that she will
reach, but says she will stop growing during puberty and then grow
again after puberty.  She also wears a size 13 in men's shoes, larger
than her father.  This has caused problems in finding her shoes.

I was also worried about my second child having Weaver syndrome.  Dr.
Weaver assured me there was less than a 10 percent chance that would
happen, but we got a second ultrasound at 30 weeks to check growth of
the fetus.  This was normal.  Dr. Weaver said Abby has a 50 percent
risk, if not greater, of having a child with Weaver if they do not
find the gene before then.  I am currently 27 weeks pregnant and am
going to ask for another ultrasound at 30 weeks to check the growth of
this baby.

I think that I have hopefully answered some of your questions, but if
you have anymore please feel free to email me anytime.

Dr. Weavers email is:    dweaver@...
It may take him a short time to answer you, but he will email you back.

Let me know how you are doing.
Greta Holmes
Kentucky, USA

--- 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

Hi!

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.

Karen have added you to her favorite list, check Karen's profile here
http://karenacbpassion.googlepages.com/bikerchicks.htm

Hi its April, I created a poll on WSSA, it is an easy one, just
question re symptoms, please fill this out, and if your weaver child
has more symptoms, please make a poll. I thought it might be nice for
parents to see what other kids with weaver have and how it affects them.
Thanks
April in WA USA
mother of Devon

Enter your vote today!  A new poll has been created for the
WSSA group:

Does you Weaver child have:

   o Dev Delays?
   o Sinus Problems?
   o Respiratory Issues?
   o Behavior Issues?
   o Gastic Problems?
   o Feeding Problems?
   o Sensory Issues?
   o Hearing/Ear Problems?
   o Vision Problems?
   o Muscle Tone decrease/increase?


To vote, please visit the following web page:
http://groups.yahoo.com/group/WSSA/surveys?id=1866276

Note: Please do not reply to this message. Poll votes are
not collected via email. To vote, you must go to the Yahoo! Groups
web site listed above.

Thanks!

--- In WSSA@yahoogroups.com, "jesstim3223" <jesstim3223@...> wrote:
>
> Hi, just wondering if there is anyone out there who we could talk
with--
> my baby niece (one month old) was diagnosed with Weaver's, and we
don't
> know ANYONE with this condition. Could somebody reply so we could
> maybe talk and share stories?
>
Hi my name is Danielle and my sons name is Shane we live in Georgia. I
know how you feel my Shane was diagnoised at 14 months old and we are
the only case in Ga besides his dad who is unoffically diagnoised. If
you need to talk I will listen you can email through here or to my
email ddauvenshine@yahoo.com I willl listen and help explain the best I
can. Danielle Auvenshine

My sons name is SAhane and he is 5 years old now.  In March he was just
diagnoised with Autism I was wondering if anyonew else had a similiar
diagnoises to go along with the Weaver's.  I was devesated when I heard
the Dr. tell me that I cried because I felt it was a cruel joke that
God was playing on my son I keep thinking "doesn't he have enough"  I
mean Weaver's, Asthma, GI problems, allergies(Dr has suggested allergy
shots), Immune Defiencies, Developmentally Disabled, Borderline MR, and
Possible CP and then I realized at least I have him and my favorite
saying came to mind "God only gives you what he knows you can Handle
and he put Shane with me for a reason" I can just say with everything
going on with Shane that if he was "normal" he wouldn't be Shane he has
a personality that can never be recreated.  And I love him with all my
heart and I will do whatever it takes to get what he needs.  Danielle
Auvenshine

--- In WSSA@yahoogroups.com, "jesstim3223" <jesstim3223@...> wrote:
>
> Hi, just wondering if there is anyone out there who we could talk
with--
> my baby niece (one month old) was diagnosed with Weaver's, and we
don't
> know ANYONE with this condition.  Could somebody reply so we could
> maybe talk and share stories?
>
Hi my name is Danielle and my sons name is Shane we live in Georgia.  I
know how you feel my Shane was diagnoised at 14 months old and we are
the only case in Ga besides his dad who is unoffically diagnoised.  If
you need to talk I will listen you can email through here or to my
email ddauvenshine@... I willl listen and help explain the best I
can.   Danielle Auvenshine

Dear Members,

Please forgive my long absence.  I have just deleted the spam and
banned a couple of members who were posting such trash.

I have authorized 2 members here at Weaver's Syndrome to delete spam
and ban users who attemp to post spam here at the Weaver's Syndrome group.

If you experience any problems in this area, feel free to email me at:

moderator_weaversyndrome@...

Thank you for your patience!

Warm Regards,

Elizabeth

I know that everyone is getting so frustrated with these spam postings
(I sure am) there are so few of us as there is...does anyone else just
want to email back and forth? Just a reminder my daughter is Maura 2
years old, Weaver Syndrome, heart surgery and cancer (currently in
remission). I really want to get a good strong dialogue as I'm sure
with all of you I feel alone and don't want to lose the line of support
that I do have.

Any takers?

Kate (Maura's mom)

I know that everyone is getting so frustrated with these spam postings
(I sure am) there are so few of us as there is...does anyone else just
want to email back and forth?  Just a reminder my daughter is Maura 2
years old, Weaver Syndrome, heart surgery and cancer (currently in
remission).  I really want to get a good strong dialogue as I'm sure
with all of you I feel alone and don't want to lose the line of support
that I do have.

Any takers?

Kate (Maura's mom)

--- In WSSA@yahoogroups.com, "April Hooper" <ahooburg79@...> wrote:
>
> Hi, sorry 'bout the long subject line, but I've been getting junk
> sent to me throught this site. I wish those people would leave
this
> site alone...
> Anyways, Devon is doing good. A lot of changes going on...He is 5
1/2
> now and getting bigger every month. His speech is improving and
with
> that the behavior part is also getting better. Allergies are
getting
> the better of him for now, it is the season...He has an
appiontment
> to see a allergy and asthma specialist this month. Hopefully we
will
> get some good advise. He gets so out of breath. His oxygen levels
> drop and heart rate goes way up anyone have same or simular
symptoms?
> This is nothing new, but the doctors that were trying to figure it
> out left the childrens hospital last year..bummer as Devon says.
They
> could not figure if it was his heart or lungs or a combo. Any one
> have problems with sensory intergration/dysfunction with their
weaver
> syndrome kids? This has been a continueing issue. He also is
> autistic, so the sensory thing might be more from that then weaver
> syndrome????
> Hope to hear from someone soon, I'm feeling all alone again.
People
> try to say they understand, but unless you have lived in my house
or
> walked in my shoes, I sincerely doubt anyone understands what me
and
> my family have been going through.
> I hope all the little ones are doing great and continueing to
thrive
> and gain milestones. Again I hope to hear from someone soon. Take
> care ALL!!
> April in washington
>
Hi its Danielle in Ga. My son Shane who is 5 has sensory
intergration but he is also autistic as well(we just found out in
Jan.)so I can not help a whole lot. Also we have awful allergies
with asthma to go with it so I am feeling you on that one. Oh yea
does any one have trouble with there childs vision Shane has to wear
glasses... +5 in right eye and +6 in left eye. Didnt know until we
went for I 5 year check up. Does anyone have trouble with
the "outside" world looking at your child and thinking they
are "normal" or ask why they are behaving the way they do;as if they
were older than they really are. I get alot of that. The favorite
question is if my 8 year old and my 5 year old are twins due to
there sizes (they are the same height ha ha). Well I too hope all
is well. If you can help thanks ahead of time. Danielle and Shane

--- In WSSA@yahoogroups.com, "April Hooper" <ahooburg79@...> wrote:
>
> Hi, sorry 'bout the long subject line, but I've been getting junk
> sent to me throught this site. I wish those people would leave
this
> site alone...
> Anyways, Devon is doing good. A lot of changes going on...He is 5
1/2
> now and getting bigger every month. His speech is improving and
with
> that the behavior part is also getting better. Allergies are
getting
> the better of him for now, it is the season...He has an
appiontment
> to see a allergy and asthma specialist this month. Hopefully we
will
> get some good advise. He gets so out of breath. His oxygen levels
> drop and heart rate goes way up anyone have same or simular
symptoms?
> This is nothing new, but the doctors that were trying to figure it
> out left the childrens hospital last year..bummer as Devon says.
They
> could not figure if it was his heart or lungs or a combo. Any one
> have problems with sensory intergration/dysfunction with their
weaver
> syndrome kids? This has been a continueing issue. He also is
> autistic, so the sensory thing might be more from that then weaver
> syndrome????
> Hope to hear from someone soon, I'm feeling all alone again.
People
> try to say they understand, but unless you have lived in my house
or
> walked in my shoes, I sincerely doubt anyone understands what me
and
> my family have been going through.
> I hope all the little ones are doing great and continueing to
thrive
> and gain milestones. Again I hope to hear from someone soon. Take
> care ALL!!
> April in washington
>
Hi its Danielle in Ga. My son Shane who is 5 has sensory
intergration but he is also autistic as well(we just found out in
Jan.)so I can not help a whole lot.  Also we have awful allergies
with asthma to go with it so I am feeling you on that one.  Oh yea
does any one have trouble with there childs vision Shane has to wear
glasses... +5 in right eye and +6 in left eye.  Didnt know until we
went for I 5 year check up.  Does anyone have trouble with
the "outside" world looking at your child and thinking they
are "normal" or ask why they are behaving the way they do;as if they
were older than they really are.  I get alot of that.  The favorite
question is if my 8 year old and my 5 year old are twins due to
there sizes (they are the same height ha ha).  Well I too hope all
is well.  If you can help thanks ahead of time.  Danielle and Shane

Hi, sorry 'bout the long subject line, but I've been getting junk
sent to me throught this site. I wish those people would leave this
site alone...
Anyways, Devon is doing good. A lot of changes going on...He is 5 1/2
now and getting bigger every month. His speech is improving and with
that the behavior part is also getting better. Allergies are getting
the better of him for now, it is the season...He has an appiontment
to see a allergy and asthma specialist this month. Hopefully we will
get some good advise. He gets so out of breath. His oxygen levels
drop and heart rate goes way up anyone have same or simular symptoms?
This is nothing new, but the doctors that were trying to figure it
out left the childrens hospital last year..bummer as Devon says. They
could not figure if it was his heart or lungs or a combo. Any one
have problems with sensory intergration/dysfunction with their weaver
syndrome kids? This has been a continueing issue. He also is
autistic, so the sensory thing might be more from that then weaver
syndrome????
Hope to hear from someone soon, I'm feeling all alone again. People
try to say they understand, but unless you have lived in my house or
walked in my shoes, I sincerely doubt anyone understands what me and
my family have been going through.
I hope all the little ones are doing great and continueing to thrive
and gain milestones. Again I hope to hear from someone soon. Take
care ALL!!
April in washington

Hi, sorry 'bout the long subject line, but I've been getting junk
sent to me throught this site. I wish those people would leave this
site alone...
Anyways, Devon is doing good. A lot of changes going on...He is 5 1/2
now and getting bigger every month. His speech is improving and with
that the behavior part is also getting better. Allergies are getting
the better of him for now, it is the season...He has an appiontment
to see a allergy and asthma specialist this month. Hopefully we will
get some good advise. He gets so out of breath. His oxygen levels
drop and heart rate goes way up anyone have same or simular symptoms?
This is nothing new, but the doctors that were trying to figure it
out left the childrens hospital last year..bummer as Devon says. They
could not figure if it was his heart or lungs or a combo. Any one
have problems with sensory intergration/dysfunction with their weaver
syndrome kids? This has been a continueing issue. He also is
autistic, so the sensory thing might be more from that then weaver
syndrome????
Hope to hear from someone soon, I'm feeling all alone again. People
try to say they understand, but unless you have lived in my house or
walked in my shoes, I sincerely doubt anyone understands what me and
my family have been going through.
I hope all the little ones are doing great and continueing to thrive
and gain milestones. Again I hope to hear from someone soon. Take
care ALL!!
April in washington