Guest guest Posted April 21, 2006 Report Share Posted April 21, 2006 Having a Fragile X dx doesn't really change anything. It just means you know what causes the autism. That's about it. Treatment is the same. No one can predict future functioning no matter what dx you have. I work with a little boy who has a different type of chromosome disorder, and his dr tried telling his mom he would never talk. Well, she laughed right in the drs face! He ALREADY talks! Not a lot, but he's only 3 and only been in therapy for 4 months! He went from 2 words to 30 in that time. So drs obviously just don't know. They can guess, but they don't know. Also, every kid I have ever worked with has been tested for Fragile X, and not a single one of them had it. Obviously some kids do, but none of the ones I know. Amnesty > > Can anyone comment (if you want to share) if you have received > confirmation of Fragile X Syndrome on top of the autism diagnosis? > The genetics specialist thinks my daughter may have Fragile X and we > did the blood work last week--now we have to wait the 4-6 weeks for > the results. I am trying to understand more on how this could change > our lives even more. It doesnt take away or replace the autism, but > builds on it. I am truly scared to hear the results. Anyone been in > this boat--it starting to sink, slowly... > > thanks > michelle > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2006 Report Share Posted April 21, 2006 We had our daughter tested and it was negative. The Dr. told us she didn't think she had it because there are certain facial features associated with Fragile X. From what I understand it is a gentic trait " I THOUGHT " carried by the parent of which a family may be interested in knowing more if considering more children. As I understand also, treatments are all based on each child not the DX. > > > > Can anyone comment (if you want to share) if you have received > > confirmation of Fragile X Syndrome on top of the autism diagnosis? > > The genetics specialist thinks my daughter may have Fragile X and we > > did the blood work last week--now we have to wait the 4-6 weeks for > > the results. I am trying to understand more on how this could change > > our lives even more. It doesnt take away or replace the autism, but > > builds on it. I am truly scared to hear the results. Anyone been in > > this boat--it starting to sink, slowly... > > > > thanks > > michelle > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2006 Report Share Posted April 21, 2006 Hi, My daughter was tested for Fragile X too,and she did have (does have)some of the facial features, and it was negative. I know these tests can be hard as you await outcome. To add my voice to the chorus, your child is the same no matter what label the " experts " place on her. Over time, these labels can truly lose their power to define our kids and upset/depress their parents...it becomes clear sometimes that our kids are unique and defy definitions. The labels are valuable because it helps get services...beyond that, I think sometimes it's best to et them recede into the background. Hang in there, Melinda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2006 Report Share Posted April 22, 2006 Fragile x is one form of known cause of retardation and autism. but in true many are best supported by being educated as if they were autistic alone. I to know of a family in my areas who has two very beautiful young daughters both have of fragile x and yet if not know of that factor one would assume both are of classical autism. Sondra In Autism_in_Girls , EbuyerMTC@... wrote: > > Hi, > My daughter was tested for Fragile X too,and she did have (does have)some > of the facial features, and it was negative. > I know these tests can be hard as you await outcome. To add my voice to > the chorus, your child is the same no matter what label the " experts " place on > her. Over time, these labels can truly lose their power to define our kids and > upset/depress their parents...it becomes clear sometimes that our kids are > unique and defy definitions. The labels are valuable because it helps get > services...beyond that, I think sometimes it's best to et them recede into the > background. > Hang in there, > Melinda > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2006 Report Share Posted April 23, 2006 The one good thing about testing is that sometimes in finding anomalies you will know beneficial things to do. Like if there's a fatty acid disorder, special diets can make all the difference. I don't know if any particular treatments have been identified in fragile x, but typically the doc will test for other issues, too. Debi - Quote Link to comment Share on other sites More sharing options...
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