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Forum: Children with Special Needs

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View Poll Results: Support Groups
yes 3 37.50%
no 5 62.50%
Voters: 8. You may not vote on this poll

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  #1  
November 19th, 2006, 12:15 PM
JuneBug2006's Avatar Forever missing Gracie
Join Date: Nov 2005
Location: Vancouver Island, BC
Posts: 5,897
I have not found one here yet but have been continuing to search.

If not, I would love to create one but I am not sure how many of us are dealing with rare disorders.
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  #2  
November 20th, 2006, 01:25 PM
jessjillmama's Avatar ***Staying Positive***
Join Date: Sep 2004
Location: Coushatta, La
Posts: 7,892
I am on a online group for my son's diagnoses and its really the only support group I need at this time. At first I think I needed a in person support group but I don't feel I need it as much now.

There are no support groups in my area that come even close to my son's condition either.
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Wife to Brian since October 2004, Mama too:
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2 Baby beans lost
Ava Sept 14th 2007, Beaux Oct 3rd 2012
* Tubal reversal December 17th 2010



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  #3  
November 22nd, 2006, 06:21 PM
JuneBug2006's Avatar Forever missing Gracie
Join Date: Nov 2005
Location: Vancouver Island, BC
Posts: 5,897
I do enjoy the online ones as well, however since Gracie's condition is as rare as it, we will never find any one actually in person....
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  #4  
November 27th, 2006, 10:10 AM
Evvy's Avatar Platinum Supermommy
Join Date: Oct 2006
Location: Savannah, GA
Posts: 12,539
I was just chosen for the board of director's for Savannah's Down Syndrome group! I was so surprised and honored It's a great group of parents/friends overall. I also belong to an online Ds support group. I am lucky with Ds being so common I guess.
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  #5  
November 28th, 2006, 05:07 PM
ZoesMommie's Avatar Super Mommy
Join Date: Aug 2006
Location: Brooksville,Florida
Posts: 629
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im having trouble finding one close to where i live. i am on online groups though. they help alot
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  #6  
December 1st, 2006, 06:40 PM
*Lindsay*'s Avatar Platinum Supermommy
Join Date: Apr 2006
Location: Virginia
Posts: 12,516
I too have an online support group for her microcephaly, but as for her possible genetic cause, it is so rare. My neuro said he has 3 patients with it now, that is so few.
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  #7  
December 3rd, 2006, 09:01 AM
JuneBug2006's Avatar Forever missing Gracie
Join Date: Nov 2005
Location: Vancouver Island, BC
Posts: 5,897
Our pediatrician said that Gracie is her first patient with this disorder and she won't come across another during her career.
I have learned so much in the last 5 months, it is crazy....

I guess there are 75 reported patients with this disorder in English-speaking medical literature; that is nothing.... ike.
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  #8  
December 4th, 2006, 05:52 PM
*Lindsay*'s Avatar Platinum Supermommy
Join Date: Apr 2006
Location: Virginia
Posts: 12,516
Quote:
Our pediatrician said that Gracie is her first patient with this disorder and she won't come across another during her career.
I have learned so much in the last 5 months, it is crazy....

I guess there are 75 reported patients with this disorder in English-speaking medical literature; that is nothing.... ike.[/b]

Maybe you have said some where already, but do you mind if I ask what Gracie's disorder is?
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  #9  
December 4th, 2006, 10:13 PM
JuneBug2006's Avatar Forever missing Gracie
Join Date: Nov 2005
Location: Vancouver Island, BC
Posts: 5,897
She has a duplication of part of the short arm of chromosome 4; pediatrician calls it duplication 4p.
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  #10  
December 11th, 2006, 03:17 PM
Regular
Join Date: Oct 2006
Posts: 68
I do sometimes it's hard being at night time with all 4 kids.
Its for my sons autism we have an autism center where they are at. They are great.
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