Guest guest Posted September 21, 2003 Report Share Posted September 21, 2003 Well our neurologist suggested we have tested for it. He said it could explain the " why " but not fix it in any way if it was. So I haven't had him tested yet. Not sure why we should. Tyna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2003 Report Share Posted September 22, 2003 I have two sisters but no daughters. But I'll make sure to make an appt to have him tested. Thanks. Tyna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2003 Report Share Posted September 22, 2003 Tyna, It is important for your family to know if it is fragile X or not because fragile X is genetic. Do you have any daughters? There is a smaller chance of them actually having it BUT they could carry it and their children could be born with it. Do you have any sisters? They could be carriers as well. The female carries the gene. I hope this helps you in your decision. Tammy Re: [ ] fragile x Well our neurologist suggested we have tested for it. He said it could explain the " why " but not fix it in any way if it was. So I haven't had him tested yet. Not sure why we should. Tyna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 In addition to the hereditary aspect of Fragile X, I think it would be important from a support perspective as well. Having a son with all the symptoms and no diagnosis, I can tell you that it sure would be nice to hook up with people whose kids have the same diagnosis and issues facing them. Instead, it's somewhat random finding people with whom I have commonalties. Just a thought. tested negative for Fragile X -- twice. I hated having to get his blood drawn -- that's the biggest drawback. Sue C. in Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 In a message dated 9/23/2003 10:50:53 AM Central Standard Time, snoozinc@... writes: > Having a son with all the symptoms > and no diagnosis, I can tell you that it sure would be nice to hook up with > people whose kids have the same diagnosis and issues facing them. Instead, > it's > somewhat random finding people with whom I have commonalties. Just a > thought. > tested negative for Fragile X -- twice. Sue, I was just wondering if you could tell me what the symptoms of Fragile X are. Also,,did ever test positive ? I have wondered about Fragile X with my oldest son,but since he tested negative,I thought that was the end of it. That was about 3 yrs ago,and I had forgotten about it,till I read your post. Kim,mom to Meaghan 14,,,Katelyn 11 Bipolar,OCD,,,Logan 6 Aspergers,JRA, & a connective tissue disorder, & last,,but not least,,Ethan 4 & 100% BOY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2006 Report Share Posted May 20, 2006 > > Can someone with fragile x " recover " ? From what I've read it seems > unlikely. I have read that kids with Down Syndrome [and other genetic issues] and Autism can recover from most of their issues with biomedical, altho not all issues. So it is likely that your child, *if* he is fragile X, can be very much improved, altho perhaps not entirely recovered. It is still something to consider. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2006 Report Share Posted May 20, 2006 I looked into it quite a lot when Ben was being tested. I wish I could tell you, no, he doesn't have that but of course I can't. I hope he is being tested with DNA methods. Here's some information from a website: FACT: For between 2% and 6% of all children diagnosed with autism, the cause is the Fragile X gene mutation. FACT: Approximately one-third of all children diagnosed with fragile X syndrome also have autism. FACT: Fragile X syndrome is the most common known cause of autism. That said, I think that since they are aware of the specific gene, Amy Yasko's group should be able to suggest appropriate supplementation, and also that GFCF diet, ProEFA etc. would be likely to work to some extent with ANY child that has autism, as well as speech therapy, occupational therapy,etc. A lot of people are carriers or have a mild form of Fragile X and a couple of generations ago people might have just thought they were a little different or quirky. These kids of course aren't throwaway kids any more than any other autistic child, and they have the same rights to education in the least restrictive environment, etc. Here's a useful page: http://www.fragilex.org/html/methylation.htm Since these kids apparently have over rather than undermethylation, I would consult an expert biochemist/nutritionist/geneticist before giving methyl B12. Peace, Kathy E. > > Can someone with fragile x " recover " ? From what I've read it seems > unlikely. We are taking my son to get this test. I'm sure most of > you have had this done and maybe even didn't think much of it. I > didn't until I decided to look at more about it. > > Now I feel eerily scared and just like a big rock is on my chest. My > son has so many of the symptoms it is alarming to me. I have alway > noticed for instance that his ears seemed on the big side, compared > to the other 3 kids. His feet are flat as can be. He has an enormous > forehead. His testicles are also enormous, which we thought was odd, > but the ped acted like it was nothing. Now, these physical things > combined with the behavioral have me scared. > > Does anyone else's child have this or do you know anymore about > this? Do any of these kids have the yeast issues, metal issues, etc. > we have seen? > > Also my son was born normal, or so we thought. Could this be, if he > had regressive autism? > > Depressed in Virginia, > Laurie > Quote Link to comment Share on other sites More sharing options...
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