Fragile X Syndrome Support Group

In my research...I.Q. is not always the indicator. One can have normal IQ and still be FX. I see you were going to have him tested. How did that turn out?

My adopted son is getting tested next month. He has an IQ of 89 but has Autistic Like qualities...fits aspergers syndrome very well, but he also has other indicators physically that leads me to think that he possibly could be FX. His mother disclosed when he was taken to foster care that she was Mentally Retarded--finding this information out led me to research genetic developmental disabilities...this is how I found FXS.

My younger sister was diagnosed with the syndrome at age 6. She always struggled in school until place on meds (Welbutrin and Seroquel). During her four years in high school- she did not need an IEP or sepcial classes! She graduated last year with HIGH HONORS and was a member of the National Honor Society! She has a mild case of it- but she has proved the text books wrong.. She was truely a miracle! I am expecting a child of my own, due in Sept- and i just found out that I carry the gene. I am afraid for my child because I do remember what a difficult time my sister had until she was on meds. While speking with my doc, he explained the chances of my child having FXS- where I am a carrier there is a 25% chance that my child will be a carrier as well, and a 75% chance that my child will not be affected at all! My advice is to get tested and have you partner tested as well- and know that tics dont always mean MR.

I have recently discovered that I carry fragile x. I have the premutation form with 57 copies, and my younger sister has 56 copies. We both have fairly high IQ's, hers being 125 and mine being 130. My father is the one who transmitted it to us, and he is considered a male carrier but he has many problems. He developed slowly as a child, and was held back in the fourth grade. He has never really had friends, and seems to lack empathy for other people and can seem rather selfish at times. He also seems to like patterns in his daily life, and gets upset when something has to change. He does not suffer from a low IQ however, and graduated from high school, as well as holding the same job as a truck driver for a major national company for 27 years.

I am also a premutated carrier and have a 16 year old son and 13 year old daughter who haven't been tested yet. They don't seem to be affected by fragile X, however I am wondering if anyone else is a carrier with children that didn't seem affected by fragile X and if any symptoms showed up later in their children's adult years.

I am a carrier being a carrier means that you have some length of premutation on the x-chromosome. Having said that I have absolutely no signs or symptoms. I am one class away from a Master of Art in Teaching. My son has the full mutation. I realized early when he wasn't meeting developmental milestones that something was wrong. The doc tested him. It was not until he received the Dx that I was tested. I would have lived my entire life completly clueless if not for my son. The point, MR and fxs do not HAVE to go hand in hand. In addition, I have met and worked with young people with mild MR and to tell you the truth I would not have known that thier IQ was one std. deviation below the norm just by talking with them.