Well, I'm sure you realise that I am a new member to this group - as
obviously you wouldn't have come across my name before.

I am a mother of a 19 month old boy who has suspected Weaver Syndrome.
  However if he has it, is a fairly mild presentation so doesn't
display all characteristics as strongly as others might.  Blood
samples from my son and husband were sent to the UK (to a research
group previously researching Sotos) last January, but we have not yet
received results back.  However these tests may not prove anything either.

Our family consists of myself (Keira), my husband (John), son (Oliver)
and 6 week old daughter (Niamh - who so far seems perfect).  We also
had a daughter, Stella, 3 years ago but she was saddly still born.
Doctors say the situations are totally unrelated and just bad luck.

I am from Sydney, Australia, but have lived in Adelaide for the past 5
1/2 years - where we may or may not end up permanently residing.  I am
currently on maternity leave from my job as a law librarian for a
large Australian law firm.

Although the care we have so far received from from the Women's and
Children's Hospital in Adelaide has been brilliant - and we are most
fortunate that doctors there have been able to come to a tentative
diagnosis of Weavers, I have so many questions especially relating to
longer term prospects of my son.  The internet has been most helpful
in leading me to a great deal of information on the condition
(especially as so rare is is difficult to find anything on it even in
university medical libraries) and fortunately has led me to this
support group.

The characteristics / medical conditions that my son exhibits are as
follows:

* Immature lungs / Hyaline Membrane Disease at birth (even though born
at 37 1/2 weeks usually only seen in very premature babies)
* Abstructive and central aponea requiring Bi-Pap and supplementary
oxygen (mostly resolved now)
* Club feet (Bilateral talipes equinovarus)being corrected with
physiotherapy and minor achillies surgery
* Advanced bone age (at 7 months a skeletal survey showed his bone age
to be 15 months
* Height/length around the 97 percentile for age
* Macrocrania, in particular with large forehead / frontal bossing
which seems to becoming more pronounced (or are we just noticing it more?)
* Hight palate
* Blue sclera
* Hair growth pattern - hair begins to grow high up on his head and
above his ears, accentuting his large forehead
* Grade 2 urinary tract reflux (seems to have grown out of this, no
more urinary tract infections since stopping antibiotics)
* Developmentally delayed - not walking at 19 months (but cruising
furniture and will walk about 8 steps supported before dropping to his
knees), language development of about 12 months, fine motor about
12-14 months.  He seems to like doing things in his own way - he could
roll from his back to front before front to back, commando crawled for
many months only just started confidently knee crawling about 8-12
weeks ago.  Currently seeing a joint team of a physiotherapist,
occupational therapist and speech therapist once a month.

I'm not sure where his social development is at, but he is a very good
natured and happy little boy who can be very cuddly.  He does seemed
to at times become overwhelmed with what is happening around him,
particularly when tired, at the end of the day, and probably more so
with the changes in the house with a new baby and not being able to
communicate how he feels.  At times I am scared that he occasionally
displays behaviour similar to a mild version of an Autism Spectrum
Disorder - but his just might be frustration at not being able to
communicate.

I'm keen to know your stories, to find out about other people's
experiences and how they/their children are developing and what they
are achieving and any complications we might experience that we should
be alert to.

I would like to read the archives of previously posted messages, but
can't seem to access them at the moment, I get a server error message
from yahoo!

I look forward to receiving any replies either via the group or
directly to my home e-mail (keirajames@...) and am
particularly interested in finding out if there are any other people
in Australia who have been diagnosed with Weaver Syndrome.

Best regards,

Keira James

(apologies for spelling errors - I rely too much on spell checkers and
can't be bothered checking the spelling of medical terms!)

Hi to you all again. It has been some time since I have been able to
spend a moment reading and catching up.  We have just come back from
a months holiday at my parents home in Spain and the rest has done
us all good.  Now its back to the routine of appointments and
specialists etc etc.  I'll admit to feeling a little sick at having
to come back to the real world!

Emma is two now but is still not walking and weighs over 32lbs.. Our
Physio talked about stepping up the exercises after the summer but
she also stressed that there are no guarantees that Emma will walk..
I cannot accept this.  I remember reading that there was another
little boy .. Brandon I believe who was a late walker.. Is he
walking now?

Emma is still not vocalizing, the occasional humming and excited
noises is all we have at the moment.. Were any of your children
really late at vocalizing?

With respect to a question raised by another mother regarding the
chances of having another child with weavers, a lot of us have other
children that are fine.. so surely the chances of having a second
child with weavers must be slim!  I was surprised to see that DR
Weaver had suggested the chances of being as high as 50%.  I too
want to add to my family so that Emma has a good support system in
place and I was waiting for Emma to start walking and be potty
trained... oh and to win the lottery!

Hope you have all managed to have a decent brake and that all the
kids are doing okay.

best wishes
Dora

----- Original Message -----

From: d auvenshine

To: WSSA@yahoogroups.com

Sent: Monday, August 08, 2005 2:58 PM

Subject: Re: [WSSA] Dr. Weaver

it did not take long he fit me in around my schedule really i told him when i was coming that way because we went for something else also and he worked us in around that.  He spent several hours taking pictures,  answer questions and taking measurements.  alot of it was for reseach to find the gene that is altered but he answered any and all questions i had.  he was very helpful

danielle

littledebif <littledebif@...> wrote:

How long did it take to get into see Dr. Weaver?  What information did
he give you that your other doctor hadn't?

Debi

__________________________________________________
Do You Yahoo!?
Tired of spam? Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

How long did it take to get into see Dr. Weaver?  What information did
he give you that your other doctor hadn't?

Debi

__________________________________________________
Do You Yahoo!?
Tired of spam? Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

How long did it take to get into see Dr. Weaver?  What information did
he give you that your other doctor hadn't?

Debi

----- Original Message -----

From: barretts10_1_94

To: WSSA@yahoogroups.com

Sent: Wednesday, August 03, 2005 2:10 PM

Subject: [WSSA] new members

Hello Everyone,

We have a 6 year old son who was diagnosed with Weavers Syndrome at
one month of age.  We are so glad to be able to connect with other
families who are experiencing some of the same things we are.  Have
any of youe ever attending the Sotos/Weavers Conference?  Is it worth
while?

We are really struggling with what to do for schooling for our son. 
He will be entering kind. this year and we are sending him to a
private christian school where he will have a full time aid
assisiting him.  If you have a WS child that is slightly older than
Beaux would you please give us any suggestions you have on
education.  I understand that each child is very different, any good
ideas will help.

Also we would like to have more children and are concerned we could
have another child with WS.  I was just recently pregnant with twins
and lost them to a miscarriage at 16 weeks, no reason for the
miscarriage was found.  Have any of you had more than one child with
Weavers syndrome.  If so, were you able to diagnose WS while you were
pregnant.

Thank you for your help,

Charlyn Barrett

----- Original Message -----

From: littledebif

To: WSSA@yahoogroups.com

Sent: Thursday, August 04, 2005 7:26 PM

Subject: [WSSA] Dr. Weaver

Several of you all have said you've met Dr. Weaver.  Where did you see
him?

Debi

Several of you all have said you've met Dr. Weaver.  Where did you see
him?

Debi

Hi everyone!  We, along with everyone else, have had a BUSY summer!
I wanted to know if anyone has a child with scoliosis.  In the
literature I have read, scoliosis is listed as common.  Brandon just
started wearing a scoliosis jacket.  His curve has reached 25
degrees. I was wondering if the curve gets worse and what other
complications come with it.

Brandon is having some dental work done tomorrow.  His front two
teeth have no enamel on them, so they are going to cap them and seal
his molars.  He is going to be put under with general anesthesia.
We hate to put him to sleep!!!

I'm glad to see we have a new member!

Hope everyone has a good end to summer!!!



Debi

Hello Everyone,

We have a 6 year old son who was diagnosed with Weavers Syndrome at
one month of age.  We are so glad to be able to connect with other
families who are experiencing some of the same things we are.  Have
any of youe ever attending the Sotos/Weavers Conference?  Is it worth
while?

We are really struggling with what to do for schooling for our son. 
He will be entering kind. this year and we are sending him to a
private christian school where he will have a full time aid
assisiting him.  If you have a WS child that is slightly older than
Beaux would you please give us any suggestions you have on
education.  I understand that each child is very different, any good
ideas will help.

Also we would like to have more children and are concerned we could
have another child with WS.  I was just recently pregnant with twins
and lost them to a miscarriage at 16 weeks, no reason for the
miscarriage was found.  Have any of you had more than one child with
Weavers syndrome.  If so, were you able to diagnose WS while you were
pregnant.

Thank you for your help,

Charlyn Barrett

__________________________________________________
Do You Yahoo!?
Tired of spam? Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

--- In WSSA@yahoogroups.com, "recon_rev" <recon_rev@y...> wrote:
>
> My wife and I have a six year old daughter who was diagnosed at age 2
> 1/2 by Dr. Weaver himself in Indiana.  We live in KY and I believe I
> have spoken with one of you, (a mother from Washington state).  I have
> been hoping to either find more parents or start a support groups
> myself, and I applaud the moderator's efforts in this group.  We were
> told by Dr. Weaver that our daughter was number 33 on the planet
> diagnosed with Weaver.  I would love to hear more from you and the
> journey you have been on and the discoveries you have made.  Anything
> I can help with, let me know.

Hi,
My name is Charlyn Barrett and I just joined this group today.  We live
near Toledo, OH and my son Beaux is 6 yrs. old with Weavers Syndrome.
I would enjoy talking with you on the phone if that would be OK with
you.  Please let me know.  Thank you.

Hello Everyone,

We have a 6 year old son who was diagnosed with Weavers Syndrome at
one month of age.  We are so glad to be able to connect with other
families who are experiencing some of the same things we are.  Have
any of youe ever attending the Sotos/Weavers Conference?  Is it worth
while?

We are really struggling with what to do for schooling for our son.
He will be entering kind. this year and we are sending him to a
private christian school where he will have a full time aid
assisiting him.  If you have a WS child that is slightly older than
Beaux would you please give us any suggestions you have on
education.  I understand that each child is very different, any good
ideas will help.

Also we would like to have more children and are concerned we could
have another child with WS.  I was just recently pregnant with twins
and lost them to a miscarriage at 16 weeks, no reason for the
miscarriage was found.  Have any of you had more than one child with
Weavers syndrome.  If so, were you able to diagnose WS while you were
pregnant.

Thank you for your help,

Charlyn Barrett

----- Original Message -----

From: Sandy

To: WSSA@yahoogroups.com

Sent: Saturday, July 16, 2005 8:30 AM

Subject: [WSSA] Sorry I've been silent...

Sorry I've been silent for the last few weeks....First my little girl,
Rebecca 7 was attacked by a big dog in our park and ended up in Alder
hey hospital with stitches to her face/head , they said she will be
left with some scars but the trauma of this, has left her with mental
scar witch are harder to heal!

Also we then went on holiday ( first day back today ) so I'm sorry for
my silence but I really was to upset to talk about it.....However
everything is getting back to normal now, I hope to talk again
soon....Hope you are all ok and of course all our little angles!

Big hugs to everyone....Sandy

----- Original Message -----

From: Sandy

To: WSSA@yahoogroups.com

Sent: Saturday, July 16, 2005 4:30 PM

Subject: [WSSA] Sorry I've been silent...

Sorry I've been silent for the last few weeks....First my little girl,
Rebecca 7 was attacked by a big dog in our park and ended up in Alder
hey hospital with stitches to her face/head , they said she will be
left with some scars but the trauma of this, has left her with mental
scar witch are harder to heal!

Also we then went on holiday ( first day back today ) so I'm sorry for
my silence but I really was to upset to talk about it.....However
everything is getting back to normal now, I hope to talk again
soon....Hope you are all ok and of course all our little angles!

Big hugs to everyone....Sandy

Sorry I've been silent for the last few weeks....First my little girl,
Rebecca 7 was attacked by a big dog in our park and ended up in Alder
hey hospital with stitches to her face/head , they said she will be
left with some scars but the trauma of this, has left her with mental
scar witch are harder to heal!

Also we then went on holiday ( first day back today ) so I'm sorry for
my silence but I really was to upset to talk about it.....However
everything is getting back to normal now, I hope to talk again
soon....Hope you are all ok and of course all our little angles!

Big hugs to everyone....Sandy

From: Sandy

To: WSSA@yahoogroups.com

Sent: Thursday, June 09, 2005 1:22 AM

Subject: [WSSA] How is everyone?

How is everyone? We've all been quiet recently, Nathan a little
difficult at the moment, He has got it in his head that we are all
going on holiday (we have all been talking about our holiday in
July).... so each and every morning he wakes up and asks if we are
going on holiday...I say, not to day, and then we have tantrums,
screaming and tears, and I've tried to explain to him, but the concept
of time is beyond him, plus I'm doing extra hours in work to cover
hols etc

So that's been my last couple of weeks, How about you guys?

             Regards.....Sandy x

How is everyone? We've all been quiet recently, Nathan a little
difficult at the moment, He has got it in his head that we are all
going on holiday (we have all been talking about our holiday in
July).... so each and every morning he wakes up and asks if we are
going on holiday...I say, not to day, and then we have tantrums,
screaming and tears, and I've tried to explain to him, but the concept
of time is beyond him, plus I'm doing extra hours in work to cover
hols etc

So that's been my last couple of weeks, How about you guys?

              Regards.....Sandy x

----- Original Message -----

From: Ryan & April

To: WSSA@yahoogroups.com

Sent: Wednesday, May 25, 2005 5:54 PM

Subject: Re: [WSSA] new member

Hi Michelle, How have things been going? I am glad to hear about Joe starting sign language!! That is great!! Devon started using sign at about one and a half, when we finally came to reality that he was not talking, only making a few "noises" that I was hoping would turn into words. It will amaze you on how fast they pick it up!! Devon uses several signs to help with his wants and demands. He uses more, all done, play, eat, drink, thank you, please, sorry, excuse me, help, just these few words(signs) gives him power. He does make sounds as he signs now. Almost like he is trying to say the words as well. Have the speech therapist mentioned using some pictures to help him communicate? We did try this, but it took long time for him to find the right picture and actually frustrated him more. We do use the picture schedule. This is a list of events that are going to happen through out the day, I try to put them in order. This way he kinda understands what is going to happen. He can prepare himself a little better. So what was his numbers? what age equivalent did he get? Using sentences is still quite off for Devon, but he can put two signs and somewhat words together now!! Great improvement.

Talk to you soon, and Good luck!!

April

april@...

----- Original Message -----

From: huggetts

To: WSSA@yahoogroups.com

Sent: Wednesday, May 25, 2005 9:26 AM

Subject: Re: [WSSA] new member

Hi Nona,

 

Welcome,

My son Joe had a speech and language 'test' this week.

He will be 3 in August but makes noises and grunts mostly.  He can say a few words but they are sounds rather than the actual words.  The speech therapist is going to start us on a sign language course as she thinks that he probably will not be speaking in sentences before he starts school (4.5).

I do know that the children with weavers all vary so maybe your son may speak sooner than Joe. 

 

Take care and please post again as it is really great to hear from you.

 

xx

Michelle

----- Original Message -----

From: nona room

To: WSSA@yahoogroups.com

Sent: Tuesday, May 24, 2005 9:35 PM

Subject: [WSSA] new member

Hello,

 

i am very pleased that I have find this chatbox . I am nona (28), i live in belgium. I have a son of 3 years old, who has weaver syndrome. We have  a lot of questions about his future. the mean question is his language. He doesn't make sences (is this the correct word? my english isn't very well).  he had at 2.5 years a developmental age of 24 months.

how do your children speak? I often have the impression that he understands a lot, but that he has a language problem.

 

so glad that I''ve find this communication channel,

greatings, nona

---

Discover Yahoo!
Stay in touch with email, IM, photo sharing & more. Check it out!

----- Original Message -----

From: Ryan & April

To: WSSA@yahoogroups.com

Sent: Thursday, May 26, 2005 10:31 PM

Subject: Re: [WSSA] my little son's diagnosis

Hi Nona. I am glad to hear from you again and look forward to getting to know both you and your little one Eban. He sounds a lot like my son and like Sandy's son. All these kids with Weavers can be very different, but at the same time so much alike!

Devon is also the largest in his class. That really does say a lot, because in his class he is the youngest by years!! He is in pre-school, most of the kids are 4 to five years old. Devon will be 4 at the end of October. School has been a God send for him. He has learns so much from his peers. His language has really picks up, and he is trying to mimic them as well. He has made great improvement! I am sure the kids with Weavers will make these goals or milestones, just at their own time and pace.

Devon has had many illnesses, mostly allergies and sinus infections now. Before he had so many problems and the doctors hear did not know what to do or where to begin with him. So it took a year and a half to kinda get him figured out. He has lung problems, bowl problems, sinus & ear problems, feeding problems. The doctors where confused because with the problems he had with bowl and feeding, he should have been very small and frail, but he was an ogre as they sometimes refereed to him as.

Devon was not to large at birth, he was 7 pounds 15 ounces, but he was incredibly long! He was a little over 23 inches!! He gained weight fast, was always off the charts since his first check up. He had several problems from birth, first being jaundice, then sleep apnea, then asthma, phenomena, acid reflux, bowl etc. etc. He was quite the mess.

He is now going to be 4 years old, as I mentioned, he is prorpotioned well. He has a large head, it is as big as mine already! His hands and feet are very huge. He wears a size 3 shoe (US) I'm not sure what size that would be where you are from, but I have a 9 year old and his feet are just as big as his! As are his hands. Devons hands are actually a little thicker than my nine year olds. I would really like to post a picture of him on this site. I would like to be able to look at the simulates in the boys. Devon has a small chin, thin finger nails and toes nails, they rarely need clipped, they just flake off. His hair is thin, but thickening with age. Shoes has been a problem since he was born. None of the cute little booties would fit him. His shoes are now special made, his feet are very wide and thick. They will not even go into a shoe, even if it is several sizes to big.

Your English is great. I have been able to understand everything you've said, well not the size and weight, but that does not have to do with your English, just I don't know what that means. Devon was born cesarean too. I am diabetic and that made my pregnancy horrible.

You are only 28 years old? You are not much older than me. I just turned 26 on May 9th. Do you have any other kids? I have a 9 (well almost 10) year old son and a 7 year old step daughter. They are both fine, my son has a bit of ADD(Attention Deficit Disorder), but is in great health, as is my step daughter.

We are so far away, but as one of the members has once said, friends are like stars, you might not always see them , but they are there.

Once again I am glad you have joined. It is nice to have parents to talk to that understand your fears, concerns and the kids.!!

I had better get going. We have to go into town and stay tonight, Devon has surgery again in the morning(his sinus's). Talk to you soon!

XO XO

April

----- Original Message -----

From: nona room

To: wssa@yahoogroups.com

Sent: Wednesday, May 25, 2005 1:20 PM

Subject: [WSSA] my little son's diagnosis

hello,

 

i was overwhelmed when i read my mail today. knowing that we're not alone in seeking what the diagnosis of weaver syndrome means (and will mean in the future) in the life of my child and family, gives me courage for what will come and comfort for the difficult time we have been through.

i'm sorry that my first mail was so brief, but i was so surprised to have found you.

 

My son is born at 11, 479 lbs and 57 cm with a caesarian. He had a lot of oedema, camptodactyly at several fingers and a large umbilical hernia. I gave up breast feeding at two months because i didn't have milk enough to feed him. He slept well. after i stopped with breast feeding he had eczema all over his body. we went to specialists all over the country. as he was 1.5 years old I tried a diet that gradually build up his immunity system. Now he's three and the eczema is very minimum.

we had a lot of prognoses, some very opposite. Most of the time specialist didn't know the syndrome. 

At 6 months, he had a bone age of 1 year.

we were told by a kinisist that he maybe never walk. But at 18 months he walked. He walks a little coarse, but i think that most of the people don't think theres more after it.  Eben (Yes, that's my boy's name) is large-limbed. He is the largest of his class. I think he looks a year older. we also experience that people have expectations not suitable for his age.

His fine motoric skills are not optimal, but he can do a lot.

His language skills are delayed. But the last days we experience sometimes  that he uses 3 words to describe what he means.

 At 29 months he had a developmental index of 80 (mean 100), what a developmental age of 24 months is.

The last weeks we experience more often outbursts of fury. i'm still not shore if it is his age or it has something to do with his syndrome. i was confrontated to hear in many of your stories that you're experience also this outbursts.

Eben has a short forehead, his eyes are a little further of each other, he has a round face.

at the beginning the camptodactyly was put in splint, but I stopped to use the splint because I thought it wasn't goog for his motoric skill and his exploration of things, he also had more eczema under the splint (what enlarged the itch, that was at that moment already unbearable). The camptodactyly gradually got better and now it is almost gone.

 

I hope i gave you some comparative (medical) material, i will give more in the next mails. the  personality of Eben an that of the members of my family wil gradually also be showed in my future mails.

 

I'm so glad that I find you. You are so far from here, but at the same time a feel so distant. i hope to hear mor about you all.

 

Greetings, Nona.

 

 

(it really is a long time that i've used my englisch, i hope you understand my sentences) 

          

---

Do You Yahoo!?
Yahoo! Small Business - Try our new Resources site!

----- Original Message -----

From: nona room

To: wssa@yahoogroups.com

Sent: Wednesday, May 25, 2005 1:20 PM

Subject: [WSSA] my little son's diagnosis

hello,

 

i was overwhelmed when i read my mail today. knowing that we're not alone in seeking what the diagnosis of weaver syndrome means (and will mean in the future) in the life of my child and family, gives me courage for what will come and comfort for the difficult time we have been through.

i'm sorry that my first mail was so brief, but i was so surprised to have found you.

 

My son is born at 11, 479 lbs and 57 cm with a caesarian. He had a lot of oedema, camptodactyly at several fingers and a large umbilical hernia. I gave up breast feeding at two months because i didn't have milk enough to feed him. He slept well. after i stopped with breast feeding he had eczema all over his body. we went to specialists all over the country. as he was 1.5 years old I tried a diet that gradually build up his immunity system. Now he's three and the eczema is very minimum.

we had a lot of prognoses, some very opposite. Most of the time specialist didn't know the syndrome. 

At 6 months, he had a bone age of 1 year.

we were told by a kinisist that he maybe never walk. But at 18 months he walked. He walks a little coarse, but i think that most of the people don't think theres more after it.  Eben (Yes, that's my boy's name) is large-limbed. He is the largest of his class. I think he looks a year older. we also experience that people have expectations not suitable for his age.

His fine motoric skills are not optimal, but he can do a lot.

His language skills are delayed. But the last days we experience sometimes  that he uses 3 words to describe what he means.

 At 29 months he had a developmental index of 80 (mean 100), what a developmental age of 24 months is.

The last weeks we experience more often outbursts of fury. i'm still not shore if it is his age or it has something to do with his syndrome. i was confrontated to hear in many of your stories that you're experience also this outbursts.

Eben has a short forehead, his eyes are a little further of each other, he has a round face.

at the beginning the camptodactyly was put in splint, but I stopped to use the splint because I thought it wasn't goog for his motoric skill and his exploration of things, he also had more eczema under the splint (what enlarged the itch, that was at that moment already unbearable). The camptodactyly gradually got better and now it is almost gone.

 

I hope i gave you some comparative (medical) material, i will give more in the next mails. the  personality of Eben an that of the members of my family wil gradually also be showed in my future mails.

 

I'm so glad that I find you. You are so far from here, but at the same time a feel so distant. i hope to hear mor about you all.

 

Greetings, Nona.

 

 

(it really is a long time that i've used my englisch, i hope you understand my sentences) 

          

---

Do You Yahoo!?
Yahoo! Small Business - Try our new Resources site!

--- In WSSA@yahoogroups.com, nona room <evytjes@y...> wrote:
> hello,
>
> i was overwhelmed when i read my mail today. knowing that we're
not alone in seeking what the diagnosis of weaver syndrome means
(and will mean in the future) in the life of my child and family,
gives me courage for what will come and comfort for the difficult
time we have been through.
> i'm sorry that my first mail was so brief, but i was so surprised
to have found you.
>
> My son is born at 11, 479 lbs and 57 cm with a caesarian. He had a
lot of oedema, camptodactyly at several fingers and a large
umbilical hernia. I gave up breast feeding at two months because i
didn't have milk enough to feed him. He slept well. after i stopped
with breast feeding he had eczema all over his body. we went to
specialists all over the country. as he was 1.5 years old I tried a
diet that gradually build up his immunity system. Now he's three and
the eczema is very minimum.
> we had a lot of prognoses, some very opposite. Most of the time
specialist didn't know the syndrome.
> At 6 months, he had a bone age of 1 year.
> we were told by a kinisist that he maybe never walk. But at 18
months he walked. He walks a little coarse, but i think that most of
the people don't think theres more after it.  Eben (Yes, that's my
boy's name) is large-limbed. He is the largest of his class. I think
he looks a year older. we also experience that people have
expectations not suitable for his age.
> His fine motoric skills are not optimal, but he can do a lot.
> His language skills are delayed. But the last days we experience
sometimes  that he uses 3 words to describe what he means.
>  At 29 months he had a developmental index of 80 (mean 100), what
a developmental age of 24 months is.
> The last weeks we experience more often outbursts of fury. i'm
still not shore if it is his age or it has something to do with his
syndrome. i was confrontated to hear in many of your stories that
you're experience also this outbursts.
> Eben has a short forehead, his eyes are a little further of each
other, he has a round face.
> at the beginning the camptodactyly was put in splint, but I
stopped to use the splint because I thought it wasn't goog for his
motoric skill and his exploration of things, he also had more eczema
under the splint (what enlarged the itch, that was at that moment
already unbearable). The camptodactyly gradually got better and now
it is almost gone.
>
> I hope i gave you some comparative (medical) material, i will give
more in the next mails. the  personality of Eben an that of the
members of my family wil gradually also be showed in my future mails.
>
> I'm so glad that I find you. You are so far from here, but at the
same time a feel so distant. i hope to hear mor about you all.
>
> Greetings, Nona.
>
>
> (it really is a long time that i've used my englisch, i hope you
understand my sentences)
>
>
>
> ---------------------------------
> Do You Yahoo!?
>  Yahoo! Small Business - Try our new Resources site!


Hello Nona!
           My name is Sandy and my son Nathan was diagnosed with
Weavers at 18 months old, at the age 3, he was able to say approx
20 - 30 words! (on a good day) however he is now 4 years and 3 month
and he now speaks in sentences! the progress he has made in just
over a year, has been remarkable! OK there are days when I cant make
much sense of him, but a year ago, if some one would of told me how
well he was going to do...I wouldn't of believed them! Yes he is
still delayed in his language skills, but I think we have all learnt
to measure our kids successes differently, I mean the tiniest of
improvement or progress we now celebrate, with my 4 older kids I
took these things for granted, and you know the sad thing is, I
don't remember many of their milestones yet I do remember all of
Nathan's!

Its wonderful that you found us! I posted some photos of Nathan,
take a look at them and see if there are any similarities to your
son Eben (with this disorder being genetic, all Weaver kids should
look similar) Its been lovely talking to you! Please come back soon
and talk again...Take care for now....Sandy   xx

PS your English is very good!

----- Original Message -----

From: huggetts

To: WSSA@yahoogroups.com

Sent: Wednesday, May 25, 2005 9:26 AM

Subject: Re: [WSSA] new member

Hi Nona,

 

Welcome,

My son Joe had a speech and language 'test' this week.

He will be 3 in August but makes noises and grunts mostly.  He can say a few words but they are sounds rather than the actual words.  The speech therapist is going to start us on a sign language course as she thinks that he probably will not be speaking in sentences before he starts school (4.5).

I do know that the children with weavers all vary so maybe your son may speak sooner than Joe. 

 

Take care and please post again as it is really great to hear from you.

 

xx

Michelle

----- Original Message -----

From: nona room

To: WSSA@yahoogroups.com

Sent: Tuesday, May 24, 2005 9:35 PM

Subject: [WSSA] new member

Hello,

 

i am very pleased that I have find this chatbox . I am nona (28), i live in belgium. I have a son of 3 years old, who has weaver syndrome. We have  a lot of questions about his future. the mean question is his language. He doesn't make sences (is this the correct word? my english isn't very well).  he had at 2.5 years a developmental age of 24 months.

how do your children speak? I often have the impression that he understands a lot, but that he has a language problem.

 

so glad that I''ve find this communication channel,

greatings, nona

---

Discover Yahoo!
Stay in touch with email, IM, photo sharing & more. Check it out!

----- Original Message -----

From: nona room

To: WSSA@yahoogroups.com

Sent: Tuesday, May 24, 2005 1:35 PM

Subject: [WSSA] new member

Hello,

 

i am very pleased that I have find this chatbox . I am nona (28), i live in belgium. I have a son of 3 years old, who has weaver syndrome. We have  a lot of questions about his future. the mean question is his language. He doesn't make sences (is this the correct word? my english isn't very well).  he had at 2.5 years a developmental age of 24 months.

how do your children speak? I often have the impression that he understands a lot, but that he has a language problem.

 

so glad that I''ve find this communication channel,

greatings, nona

---

Discover Yahoo!
Stay in touch with email, IM, photo sharing & more. Check it out!

----- Original Message -----

From: nona room

To: WSSA@yahoogroups.com

Sent: Tuesday, May 24, 2005 9:35 PM

Subject: [WSSA] new member

Hello,

 

i am very pleased that I have find this chatbox . I am nona (28), i live in belgium. I have a son of 3 years old, who has weaver syndrome. We have  a lot of questions about his future. the mean question is his language. He doesn't make sences (is this the correct word? my english isn't very well).  he had at 2.5 years a developmental age of 24 months.

how do your children speak? I often have the impression that he understands a lot, but that he has a language problem.

 

so glad that I''ve find this communication channel,

greatings, nona

---

Discover Yahoo!
Stay in touch with email, IM, photo sharing & more. Check it out!

--- In WSSA@yahoogroups.com, "huggetts" <huggetts@s...> wrote:
> Hi everyone and a big snuggle for all the weaver kids (if they let
you that is!).
>
> I hope you are all ok and things are going as well as can be
expected.  The boys are a bit crazy at the moment - not sure why as
I have ruled out anything they have eaten/drank so it must be the
sunshine we are having!
>
> We have got a busy week coming up, ot meeting at James school - he
is testing out a 'move and sit' cushion at home and school and it
has really helped in just a few days of trial - its a disc shaped
plastic cushion about the size of a large dinner plate that is semi
filled with air, it sort of has lots of nodules on the part that you
sit on and the idea is that with kids that have problems with
messages from the body to the brain, the seat gives constant
information to the receptors so that the child does not have to
fidget quite so much. So far so good.
>
> Joe has got his first speech therapy session on Tuesday but he is
most likely not to say anything at all so it might be a bit
embarrassing and to top it all James has jumped onto out settee and
had completely broken it!  I've got to wait ages until I can afford
another one (our insurance does not cover kids like mine - not fair
really).
>
> Something funny happened to me last week at the doctors - ive been
told to loose weight and EXERCISE MORE..... HUH!  I am sure that you
are all with me on this one.  We don't stop.  Most mothers of the
world have busy lives but I can truly say that chasing after my boys
from 4am until they eventually go to bed is enough exercise for an
Olympic triathlete. HA.  I'll give him more exercise.!!
>
> Take care everyone and I will try to catch up on posts in the week.
>
> xxx
> michelle
>
> ps - the diet starts tomorrow!!!



Hi michelle.....GO GIRL....mine started today!

               Sandy    xx

--- In WSSA@yahoogroups.com, frances pattin <fpattin85351@y...>
wrote:
> I really don't have anything to add to all of your
> emails, but I read each one with great interest.  We
> are very fortunate to have a very mild case of Weavers
> to deal with -- we hope it remains that way.  My great
> grandson is progressing re markedly well in all areas.
>  He rarely has a tantrum (but when he does it's a
> duzy!)  He also rarely throws things any more.  He
> loves the Ninja Turtles, Power Rangers, etc. but we
> try to keep all the TV to a very minimum, unless it's
> Winnie the Pooh, or the Wiggles, etc. because he is
> very aggressive in his play.  His speech is
> remarkable, but that is because his mother has never
> talked baby talk to him and has always worked to teach
> him how to pronounce big, hard words correctly.  He
> does have a deformed ear, receding hairline, and his
> thumbs and fingers are differently proportioned.  He
> is 3 1/2 now and can spell his name and knows it by
> sight as well as his numbers and can repeat the
> alphabet with no problem.  As I told you in my first
> letter, my granddaughter refuses to accept the fact
> that he has Weavers, which is probably one reason why
> she works so diligently with him.  He has been in the
> same daycare for the past year and a half -- thought
> they were going to expel him the first few months
> because of his aggressiveness -- but he will soon be
> promoted to the four-year-old class and he is already
> excited about that because his size is more like the
> four-year-olds. I admire all of you for your loving
> support and care of your special children -- you know
> it takes special parents to have special children --
> only a few have been chosen to raise Weavers children.
>  You're all fantastic!
> Fran
>
> __________________________________________________
> Do You Yahoo!?
> Tired of spam?  Yahoo! Mail has the best spam protection around
> http://mail.yahoo.com





Hello Fran....I hope your well! Your great grandson sounds like a
lovely little boy, and you sound very proud of him...and so you
should be, you said that his mum refuses to except that he has got
Weavers? Well people react differently to different situations don't
they or its more likely that because he is affected so mildly with
weavers when reading all available text on weavers it can sound so
alarming so there may be a lot of info she cant relate it to her
little boy, also I think anyone with a little common sense will
question any diagnosis I know I did! its been a question of time and
experiences with Nathan as he has grown older (he is nearly four and
a half now) that I have come to terms with his diagnosis and I do
now agree that he does have this disorder!

You said that you have very little to add, how wrong you are! you in
fact have brought up such an important point, and that is, that
Weavers like any other disorder comes with a scale ranging from very
mild to sever, and anyone reading these posts who maybe faced with a
diagnosis of weavers should know its not all doom and gloom, that in
fact there are kids out there with Weaver syndrome who are perfectly
ok and who don't experience most of the characteristics that go with
this genetic disorder!

I also feel I have to echo what April said about the issue of
speech, as your great grandson does have Weavers mild, his speech
may not be affected at all (because with speech problems come other
problems like frustration etc) April is correct in what she said
about muscle tone( which affects the tongue because it is only a
muscle) They call it either HYPOTONIC or HYPERTONIC (I never know
which?) simply meaning floppy, low muscle tone, if your child has
this particular characteristic of weaver syndrome, they will
experience problems and possible delays in their speech, balance, co-
ordination etc

Please don't think you have nothing to add or say, I think you have
brought up, possibly one of the most important point regarding this
syndrome! that our kids are all different good or bad! I would love
to hear how your great grandson is doing etc as it creates a balance
and I know that myself and I'm pretty sure all the other mums in
this support group would sincerely and genuinely be pleased and
celebrate in your great grandsons achievements and successes!

I hope we talk again soon, take care    Hugs   Sandy xx