virtualvisual Report post Posted March 7, 2006 The health visitor from the genetics clinic has been round for a visit to go over our family background prior to the boys visits to the clinic in the next couple of weeks. According to her they should have been tested when Alex was diagnosed with AS/HFA 7 years ago ? She got really excited over the few photos I have of the boys when they were little (insert bitter comment about inlaws and bonfires here ) and started muttering about obvious traits and how she expects the tests will prove worth doing. She didn't make it clear what traits she was looking for so I'm wondering if anyone knows of any photos on the net of Fragile X kids, I'd like to see some just to see if anything sticks out to me. I'm not concerned about the tests or what they will show, to be honest I'm kinda numb now. I suppose if someone could write down a definate reason why James is a violent bully one minute and an angel the next I'd be over the moon but I've given up hoping an answer will appear that will explain how he is to other people Quote Share this post Link to post Share on other sites
Debs Report post Posted March 7, 2006 Here are 2 links to reliable fragile x sites there may be some pics on them. Good luck <'> http://www.cafamily.org.uk/Direct/f33.html http://www.fragilex.org.uk Quote Share this post Link to post Share on other sites
lil_me Report post Posted March 7, 2006 (edited) There are several sites on Fragile X, in my opinion a test should be done before an ASD dx is confirmed as one of the main symptoms are autistic traits. There are facial features which also tend to be one of the symptoms but not all children have these who have fragile x, either that or they aren't very visable, I have met several children with this and some don't look any different, but 2 like my son have flat feet. More info on here http://www.fraxa.org/aboutfx_symptoms.aspx My son has had the test done recently and we are awaiting results. Edited March 7, 2006 by lil_me Quote Share this post Link to post Share on other sites
virtualvisual Report post Posted March 7, 2006 Thanks guys, looking at the links I can see what she was on about. Both boy have largish heads and James has very prominent ears. I'll wait and see what the clinic says but it's a possibility. Quote Share this post Link to post Share on other sites
JsMum Report post Posted March 8, 2006 Hi I have read a lot about Fragile X and J has many of the symptoms and already diagnosed ADHD ODD LD DYSLEXIA SPeech and Language Developmental Delay and very aggressive and Violent, so we have had him tested for FXS we have an appointment in two weeks to recieve the results, its taken ages, i know that FXS is not rutiinly checked, so many children could have it and not know it, and yes the facial features are not always apparent. I will let you know of the results, I dont know if he does, but he is also been monitored for ASD/HFA as he has sensory issues and communication and interaction concerns and difficulties. I found this and it shows you photos of kids with Fragile x also a great website. http://www.fragilex.org/photogallery/photogallery.htm Fun Mum Quote Share this post Link to post Share on other sites
lil_me Report post Posted March 8, 2006 Just looking through those images confirms that the specific facial features aren't always noticable. Makes you wonder how many undiagnosed people have Fragile X doesn't it. I know my sons CP, CAHMs Psychiatrist and the ASD team all think it should be done routinely when ASD traits are noticed hence why his appointment was booked within weeks of being diagnosed, but like JsMum has said the result take ages, anything fom 6-10 weeks I am told. Quote Share this post Link to post Share on other sites