Forums > Special NeedsPage 1 <> 38by: LalaListerfiend

re: A list of Disorders.

posted 16th Jan '12
Quoting *^Mary^*:"   really?? that is insanely scary! i'm so sorry you have to go through that! i don't think i could handle one seizure! you are a very strong mama"



thank you
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I'm due June 28th (a girl), have 3 kids & 2 angel babies & live in United Kingdom
posted 16th Jan '12
I know I am very new here, but thought I would get in on this chat!

My daughter has Cerebral Palsy, PVL, feeding tube, and seizures.
My son has Asperger's Syndrome.
My husband has fibromyalgia.
I have MS, Wilson's Disease (which has caused liver problems, kidney problems), and high cholesterol.
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I live in Nebraska
posted 18th Jan '12
My son Has ME/CFS
he was diagnosed last April and is 6!
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I have 4 kids & live in United Kingdom
posted 1st Feb '12
Hi there congrats to all the mums and mums to be!! i'm not sure if it's on the list and i've over looked it but i'm 37wks pregnant and my baby girl has a limb deficiency, her right arm did not form fully and it seems 2/3 of her forearm and hand is missing on that side. i won't know anymore until she's born but would like to get in contact with people in a similar situation with a child who has a limb deficiency or if you yourself do. Any information would be greatly appreciated, thanks  )
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posted 1st Feb '12
Quoting Laura May:" Hi there congrats to all the mums and mums to be!! i'm not sure if it's on the list and i've over looked ... [snip!] ... with a child who has a limb deficiency or if you yourself do. Any information would be greatly appreciated, thanks  )"

I went to school with a girl with a limb deficiency. When we were little she has a hook (this was in the 80s) and then she got a prostetic (in the early 90s) but most of the time she didn't wear anything. She could do everything we all did and she even played softball in HS. Her arm ended just below the elbow (had the crook of the elbow and then maybe 2-3 inches below the joint).
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I'm due May 19th (a boy) & live in Wisconsin
posted 1st Feb '12
Quoting bazinga!:" I went to school with a girl with a limb deficiency. When we were little she has a hook (this was in ... [snip!] ... softball in HS. Her arm ended just below the elbow (had the crook of the elbow and then maybe 2-3 inches below the joint)."

That's awesome thanks for the response!! I do worry about my bubs quality of life amongst other things and I'm so glad that others get on well without the 'missing limb', it's so encouraging  ) There is a support group up at the Sydney Childrens Hospital which we'll travel to and attend but also good to know you can jump online and have a chat about these things.
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posted 1st Feb '12
Quoting Laura May:" That's awesome thanks for the response!! I do worry about my bubs quality of life amongst other things ... [snip!] ... Hospital which we'll travel to and attend but also good to know you can jump online and have a chat about these things."

Sometimes the internet is just fantastic   She's in her early 30s now and has a pretty awesome life. She just got married in the last year and is doing something environmental (something she was always interested in). We'd lost touch for a long time but recently reconnected on FB.
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I'm due May 19th (a boy) & live in Wisconsin
posted 1st Feb '12
Quoting bazinga!:" Sometimes the internet is just fantastic   She's in her early 30s now and has a pretty awesome life. ... [snip!] ... environmental (something she was always interested in). We'd lost touch for a long time but recently reconnected on FB."

That's great news  ) and how great is facebook for that reason!!
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posted 2nd Feb '12
i have border line personalty disorder,
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I have 1 child & live in New York
posted 3rd Feb '12
Laura May, thought you'd be interested in this article about a 17 year old girl who has a limb deficiency  

http://www.dailymail.co.uk/health/article-2095902/Hollie-Arnold-17-born-arm-poised-throw-javelin-London-2012-Paralympics.html
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I'm due May 19th (a boy) & live in Wisconsin
posted 6th Feb '12
My name is Bethany. My son, Eli, has Cornelia de Lange Syndrome. He was diagnosed at birth. I don't know enough about the disorder to tell you much yet but he doesn't have his right arm from the elbow down and his left arm goes into a point where one of his fingers grew. He has feeding difficulties and wont be able to come home until he gets a G tube.
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I have 2 kids & live in Terra Alta, West Virginia
posted 14th Feb '12
My daughter is special needs. It's called Biliary Atresia, I think there are only 3 of us on the site maybe 2 that have little girls with this disease, it is fatal if they can't get a transplant.

http://www.cincinnatichildrens.org/health/b/biliary/

there is a link with some information. Riley is on the liver transplant list and is 6 months old. She weighs only 10lbs 7oz she was 7lbs 5oz when born. This disease is congenital (born with it)
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I have 1 child & live in Iowa
posted 23rd Feb '12
Quoting *Riley&Caydence*:" My daughter is special needs. It's called Biliary Atresia, I think there are only 3 of us on the site ... [snip!] ... list and is 6 months old. She weighs only 10lbs 7oz she was 7lbs 5oz when born. This disease is congenital (born with it)"

I'll keep you and your daughter in my prayers. I hope she gets a transplant soon!
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I have 3 kids & 1 angel baby & live in Ohio
posted 24th Feb '12
Quoting mamadebs:" I'll keep you and your daughter in my prayers. I hope she gets a transplant soon!"
Thank you!
We hope so too!
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I have 1 child & live in Iowa
posted 27th Feb '12
im the last jessica under the parents with disorders, i have one more to add
i just found out i have methemoglobinemia. It explains my blueness lol

and my daugher audrey has PDD-NOS and Sensory Processing Disorder
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I'm due August 8th (a boy), have 1 child & 2 angel babies & live in Texas
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