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Williams Syndrome

The time now is 05/11/08 - 03:18
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berri
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Joined: 04 Aug 2001
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PostPosted: 11/19/06 - 00:00    Post subject: Williams Syndrome Reply with quote


I’m a mother of 7 year old child with William Syndrome. He was diagnosed recently and I’d like to here what are Williams Syndrome causes and symptoms and what I can expect in what direction this disorder could go.
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sweezy
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PostPosted: 12/13/06 - 06:31    Post subject: Reply with quote


Hi! I have a child diagnosed with same disorder. This is rear disorder that is manifested in physical and development problems. There are many signs and symptoms of WS: development problems which are characterized by low birth weight, slow weight gain and feeding problems. Other symptoms are blood and hearth problems, facial and dental abnormality and many other symptoms. Usually their IQs are very low, in fact they’re defined very often as mentally retarded and the symptoms are learning and intellectual disability, impulsive personality and mental retardation. The list of symptoms is much longer than this and these symptoms may vary from individual to individual. And the possible causes of this disorder you should get familiar with are: contractures, learning disability, congenital hearth disease, facial abnormality, short stature and so on. Of course this does not means that WS in your child will affect all this medical condition, but just to mention that the WS may be a possible cause of this and similar medical conditions.
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mellisa
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PostPosted: 06/10/07 - 17:21    Post subject: Reply with quote

I also have a child with ws. He is 8 years old now. We found out at age 3 what he had. It has been a long road to this point. From the age of 3 to now he has learned so much and I am very proud of him. He tries very hard. If you need anyone to talk to about this just let me know. Before we found out what he had, he cried for almost 3 years all day and night. With no help from family, it was hard. I cherish Jeremy very much and dont know what I would do without him!!
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kristen4
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Location: Ajax, ON Canada

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PostPosted: 03/01/08 - 07:51    Post subject: Reply with quote

mellisa wrote:
I also have a child with ws. He is 8 years old now. We found out at age 3 what he had. It has been a long road to this point. From the age of 3 to now he has learned so much and I am very proud of him. He tries very hard. If you need anyone to talk to about this just let me know. Before we found out what he had, he cried for almost 3 years all day and night. With no help from family, it was hard. I cherish Jeremy very much and dont know what I would do without him!!


Hi there,

I read your post and I can't tell you enough how I can relate. I recently found out that my 27 year old brother had Williams Syndrome. We always knew there was something wrong as he had complications right from birth. It tooks years and years of researching and doctors visits to figure out what was wrong. Finding all this out was a relief but one of the hardest things I have ever had to deal with in my life.

I noticed in your post that you said if anyone needed to talk to someone about this to let you know so here I am. Maybe you can help me or point me in the right direction.

My husband and I are planning on trying to concieve a child and my biggest conern is that my baby will be born with it. ITs been such a long road and this may sound selfish but I am sure people that have dealt with this know exactly how much pain something like this can do to a person. Do you know how big the risk is of me conceiving a child with it is?

If you could help I would appreciate it. I want to know how big of a risk before we try to get pregnant.

Thanks Mellisa Smile
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kristen4
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Joined: 01 Mar 2008
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Location: Ajax, ON Canada

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PostPosted: 03/01/08 - 08:13    Post subject: Re: Williams Syndrome Reply with quote

berri wrote:

I’m a mother of 7 year old child with William Syndrome. He was diagnosed recently and I’d like to here what are Williams Syndrome causes and symptoms and what I can expect in what direction this disorder could go.


Hi there,

I can probably help you with any questions you may have. I have been dealing with the fact my 27 year old brother's diagnosis of Williams Syndrome for quite some time, so I know how you feel and what your going through. So many questions and not enough resources. The sad thing about the disease is that theres no cure.

The symptoms are low birth weight, elfish features, big lips, speaced teeth, and very friendly. I know growing up with my brother he would and still does talk to anyone. Which is scary especially for a younger child. Another thing is very senstive to loud noises. There was a site that actually said that people with this disease have a love for music. I hope this helps. I know its unbelievably hard dealing with this but know that there are people you can talk too.

The biggest piece of advice I could give someone is treat them like a normal person. I know my parents used to really baby my brother and do everything for him. And now hes 27 years old and cant cook for himself, do laundry, or take public transpotation. They arent stupid people you just have to work at their pace.

I am proud to say my brother is a volunteer at the YMCA, he participates in community activities, and everyone loves him and thinks the world of him. I am proud hes in my life and wouldnt change him for the world.
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poetsdream28
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Joined: 06 May 2008
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PostPosted: 05/06/08 - 08:47    Post subject: A mother that is scared about son having Williams Syndrome Reply with quote

I am a 28 year old mother and i just found out my 3 year old son that is on a feeding tube he has Williams Syndrome . I dont know to much about it and I want to know more.can someone help me??? Crying or Very sad
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