Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 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...
Guest guest Posted July 28, 2010 Report Share Posted July 28, 2010 I have had my daughter have a genetic test when I suspected she had a growth disorder and it turned out she did. It also explained the AS. Do your children have any other physical issues? Abnormalities in the face, ears, heart, laxity in joints? Besides fragile X their are other single gene issues (deletion of chromosome 22q) and many many multiple gene issues that run in families. A genetist at a major university would be the best bet to look at the family history and symptoms of the children and decide what type of genetic tests to perform on one of them. I have found the most helpful test though to be the neuropyschological evaluation. My daughter has above average reasoning skills yet she has deficits in other areas that explains her school issues. For us the genetic test tied together all the health issues she had and put us in touch with a support group for the physical issues. Good luck in whatever you decide, Pam > > Has anyone on here had there AS child tested for fragile X syndrome? My doctor suggested it since all three of my children have sensory problems and some degree of autistic symptoms. However I thought usually people with Fragile X usually tested low on IQ tests and all three of my kids are very um booksmart. Only the eldest has had an intelligence test, though and was high I think. Just wondering if this is really something we should pursue or not. I guess it wouldn't hurt to rule it out. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2010 Report Share Posted July 28, 2010 When you say abnormalities in the face what exactly do you mean? My son with Aspergars has a droop on the side of his mouth. Ginger > > > > Has anyone on here had there AS child tested for fragile X syndrome? My doctor suggested it since all three of my children have sensory problems and some degree of autistic symptoms. However I thought usually people with Fragile X usually tested low on IQ tests and all three of my kids are very um booksmart. Only the eldest has had an intelligence test, though and was high I think. Just wondering if this is really something we should pursue or not. I guess it wouldn't hurt to rule it out. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2010 Report Share Posted July 28, 2010 I just read about Fragile X. Definately sounds like something I should check into... > > > > > > Has anyone on here had there AS child tested for fragile X syndrome? My doctor suggested it since all three of my children have sensory problems and some degree of autistic symptoms. However I thought usually people with Fragile X usually tested low on IQ tests and all three of my kids are very um booksmart. Only the eldest has had an intelligence test, though and was high I think. Just wondering if this is really something we should pursue or not. I guess it wouldn't hurt to rule it out. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2010 Report Share Posted July 28, 2010 Well my daughter has sensory integration disorder, she is very short, has ridiculously tiny ears I mean smaller than a newborn when she is 4, she is also double jointed. My son has the typical large ears associated with fragile x and has been diagnosed with AS, he is 6. My youngest son is 15 months and being evaluated for autism. He has a severe speech delay, but is quite social. No real physical things that have been detected yet besides delayed gross motor skills and feet that point out. They all three have varying degrees of sensory issues and some autism red flags but nothing real clear cut and obvious. > > > > Has anyone on here had there AS child tested for fragile X syndrome? My doctor suggested it since all three of my children have sensory problems and some degree of autistic symptoms. However I thought usually people with Fragile X usually tested low on IQ tests and all three of my kids are very um booksmart. Only the eldest has had an intelligence test, though and was high I think. Just wondering if this is really something we should pursue or not. I guess it wouldn't hurt to rule it out. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2010 Report Share Posted July 29, 2010 If your daughter is below the 5% growth curve for her age I would look at the Magic Foundation website on growth issues and see for yourself what might make sense to you. If she is at the 5% curve for height or better than she is just petite and there is no reason to follow up on growth issues. My daughter was on the 3% curve until she turned 9 and then progressively fell farther behind. So by age 9 it was clear. Laxity in joints is present in many issues but by itself is not a disease in itself unless it is so severe that she has had dislocated joints. The magic foundation may be helpful to you. On their website there are pictures of kids with various issues. Pam > > > > > > Has anyone on here had there AS child tested for fragile X syndrome? My doctor suggested it since all three of my children have sensory problems and some degree of autistic symptoms. However I thought usually people with Fragile X usually tested low on IQ tests and all three of my kids are very um booksmart. Only the eldest has had an intelligence test, though and was high I think. Just wondering if this is really something we should pursue or not. I guess it wouldn't hurt to rule it out. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 Here is a page that talks about fragile x and what it looks like. http://www.fpg.unc.edu/~fx/pages/overvu.htm You have to consider your options so it's hard to say to do or not to do something like that. We never did as we didn't feel our kids would fit the profile. But if you are worried, I guess you can have the test or get a second opinion. Roxanna Whenever I feel blue, I start breathing again. ( ) Fragile X Has anyone on here had there AS child tested for fragile X syndrome? My doctor suggested it since all three of my children have sensory problems and some degree of autistic symptoms. However I thought usually people with Fragile X usually tested low on IQ tests and all three of my kids are very um booksmart. Only the eldest has had an intelligence test, though and was high I think. Just wondering if this is really something we should pursue or not. I guess it wouldn't hurt to rule it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 We saw a truly wonderful neurologist with Childrens Hospital in Milwaukee after several others that were not so wonderful and she had us do a whole range of testing, which for a worrier like me was a godsend- to have a more defined idea of what we were working with and what we needed to do to help my son rise to his full potential. As it turned out he fit criteria but did not have Fragile x but I was glad we did the testing anyways. Some of the genetic testing is extremely expensive, so she had us get all the cpt codes and verify with the insurance against the diagnostic codes to make sure it would be covered. I am glad we did that part, but it was a relief to know if there was some specific cause to the issues we were having and if there was anything we needed to know to make life easier for him. I would reccommend it, if you are a worrier - you will feel better to not have the what ifs looming. From: Roxanna <MadIdeas@...>Subject: Re: ( ) Fragile X Date: Tuesday, August 10, 2010, 12:27 PM Here is a page that talks about fragile x and what it looks like. http://www.fpg. unc.edu/~ fx/pages/ overvu.htm You have to consider your options so it's hard to say to do or not to do something like that. We never did as we didn't feel our kids would fit the profile. But if you are worried, I guess you can have the test or get a second opinion. RoxannaWhenever I feel blue, I start breathing again. ( ) Fragile X Has anyone on here had there AS child tested for fragile X syndrome? My doctor suggested it since all three of my children have sensory problems and some degree of autistic symptoms. However I thought usually people with Fragile X usually tested low on IQ tests and all three of my kids are very um booksmart. Only the eldest has had an intelligence test, though and was high I think. Just wondering if this is really something we should pursue or not. I guess it wouldn't hurt to rule it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 Any idea how I might get adult son tested for fragile X? He meets several of the criteria, including the tremors...but I can't find any way or project that tests adults. Especially ones with no health insurance. I had never even heard of it until after he was grown. Sue in TN > > Here is a page that talks about fragile x and what it looks like. http://www.fpg.unc.edu/~fx/pages/overvu.htm > > You have to consider your options so it's hard to say to do or not to do something like that. We never did as we didn't feel our kids would fit the profile. But if you are worried, I guess you can have the test or get a second opinion. > > > > > Roxanna > Whenever I feel blue, I start breathing again. > > > > > > ( ) Fragile X > > > > > > Has anyone on here had there AS child tested for fragile X syndrome? My doctor suggested it since all three of my children have sensory problems and some degree of autistic symptoms. However I thought usually people with Fragile X usually tested low on IQ tests and all three of my kids are very um booksmart. Only the eldest has had an intelligence test, though and was high I think. Just wondering if this is really something we should pursue or not. I guess it wouldn't hurt to rule it out. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 Thanks, our kids don't seem to completely fit the profile either, but my family background seems to and I have read that the symptoms do vary. So I think we are going to go ahead with the testing. Too bad we have to drive 2 hours to get it done though. Thanks for the link! > > Here is a page that talks about fragile x and what it looks like. http://www.fpg.unc.edu/~fx/pages/overvu.htm > > You have to consider your options so it's hard to say to do or not to do something like that. We never did as we didn't feel our kids would fit the profile. But if you are worried, I guess you can have the test or get a second opinion. > > > > > Roxanna > Whenever I feel blue, I start breathing again. > > > > > > ( ) Fragile X > > > > > > Has anyone on here had there AS child tested for fragile X syndrome? My doctor suggested it since all three of my children have sensory problems and some degree of autistic symptoms. However I thought usually people with Fragile X usually tested low on IQ tests and all three of my kids are very um booksmart. Only the eldest has had an intelligence test, though and was high I think. Just wondering if this is really something we should pursue or not. I guess it wouldn't hurt to rule it out. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2010 Report Share Posted August 11, 2010 I'm not sure for someone without insurance. You might ask your local health department. They are who originally referred us and it was to somewhere supported by donations, but they were full so our ped is referring us elsewhere. We do have insurance, so i wasn't too concerned. I would say either health department or maybe email some of the non-profit fragile x organizations like FRAXA. They might be able to give you some advice. > > > > Here is a page that talks about fragile x and what it looks like. http://www.fpg.unc.edu/~fx/pages/overvu.htm > > > > You have to consider your options so it's hard to say to do or not to do something like that. We never did as we didn't feel our kids would fit the profile. But if you are worried, I guess you can have the test or get a second opinion. > > > > > > > > > > Roxanna > > Whenever I feel blue, I start breathing again. > > > > > > > > > > > > ( ) Fragile X > > > > > > > > > > > > Has anyone on here had there AS child tested for fragile X syndrome? My doctor suggested it since all three of my children have sensory problems and some degree of autistic symptoms. However I thought usually people with Fragile X usually tested low on IQ tests and all three of my kids are very um booksmart. Only the eldest has had an intelligence test, though and was high I think. Just wondering if this is really something we should pursue or not. I guess it wouldn't hurt to rule it out. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2010 Report Share Posted August 13, 2010 Thanks for the suggestions. I did find a test that they are sending me for a study at Emory in Atlanta for the moms of potential fragile x. I didn't realize that I would be the carrier for it, so that would be one step towards ruling it out if I am a carrier. That is very weird feeling too that it might come back positive. There are days when I despair that something I breathed or ate or did during pregnancy is the cause of son's disabilities. I also wondered what physical symptoms parents of fragile x are seeing in their kids. I read some of the descriptions and DS doesn't seem to fit at all...and then I read another article and it sounds like him...he has some sensory issues, not extreme. Long face, but very tall. Poor muscle tone, poor speech comprehension and an odd speech pattern. So we'll see how that come out and maybe by then he will have a full time job with medical! Sue in TN > > > > > > Here is a page that talks about fragile x and what it looks like. http://www.fpg.unc.edu/~fx/pages/overvu.htm > > > > > > You have to consider your options so it's hard to say to do or not to do something like that. We never did as we didn't feel our kids would fit the profile. But if you are worried, I guess you can have the test or get a second opinion. > > > > > > > > > > > > > > > Roxanna > > > Whenever I feel blue, I start breathing again. > > > > > > > > > > > > > > > > > > ( ) Fragile X > > > > > > > > > > > > > > > > > > Has anyone on here had there AS child tested for fragile X syndrome? My doctor suggested it since all three of my children have sensory problems and some degree of autistic symptoms. However I thought usually people with Fragile X usually tested low on IQ tests and all three of my kids are very um booksmart. Only the eldest has had an intelligence test, though and was high I think. Just wondering if this is really something we should pursue or not. I guess it wouldn't hurt to rule it out. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2010 Report Share Posted August 20, 2010 I saw this great page of info at the national fragile x organization --> http://www.fragilex.org/html/guidelines.htm This page talks about what test is needed and how much it costs, what a doc should request, etc. They also had a tab for research. You might join their newsletter to keep tabs on what might be available or network with other parents of older kids. Roxanna Whenever I feel blue, I start breathing again. ( ) Fragile X > > > > > > Has anyone on here had there AS child tested for fragile X syndrome? My doctor suggested it since all three of my children have sensory problems and some degree of autistic symptoms. However I thought usually people with Fragile X usually tested low on IQ tests and all three of my kids are very um booksmart. Only the eldest has had an intelligence test, though and was high I think. Just wondering if this is really something we should pursue or not. I guess it wouldn't hurt to rule it out. > Quote Link to comment Share on other sites More sharing options...
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