fragile x syndrome

I have been going through testing since i had 2 chemicals. I was just told i tested positive for the fragile x syndrome. I know nothing about it, but they told me it can cause birth defects..... I made an appointment with a genetic counsler, but does anyone have experiece with this? i'm freaking out now! any info would be great! tia

Re: fragile x syndrome

Yes, mine also came up with fragile X (its a gene that carries mental retardation). My Dr. said it does not cause birth defects to your offspring. However, when your offspring has offsprings they might have a chance of getting it. I have a healthy 3 year old now, so I am not stressing it but it is scary to think that my future grand kid might have it. I leave in Gods hands.

Re: fragile x syndrome

Re: fragile x syndrome

Hi There - I have a brother with Fragile X - (from my dads second marriage - my stepmom is a carrier) I know ALOT about Fragile x and my brother is seriously the BEST lives a great life and there are about 10 children in my step moms family affected by this - it is 99% more likely to affect male children and female children are likely to only be carriers that can pass it along to 50% of their male children. (my parents have 2 boys and 1 is affected) my other brother is free and clear and not a carrier. My stepmoms sister has 4 children 3 boys and 1 girl her daughter is a very mildly affected carrier - and she has 2 boys with the disorder and one that is not and is not a carrier. If you have any questions feel free to FM me. I know that Fragile X is a scary thing but I know that all of my couisins on that side of the family (next generation) none of them have Fragile X babies - so a genetic counseler is a wise next step to get the facts about this but I really just wanted to let you know that all the family members I have affected with this are high functioning amazing members of society with jobs, girlfriends, etc.....I just wanted to share that. Best of luck and again ig you have any questions - just fm me.

Re: fragile x syndrome

Re: fragile x syndrome

Do a search under my name for fragile x. I posted a lot of info I recd from our genetic counselor. My ob knee very little about the testing ranges at the time so we went for GC but a it turns out my #s while in the grey zone no child has ever been reported as being born with fragile x after their mother had my #s.

Good luck I know its scary.

Re: fragile x syndrome

Thanks everyone. I met with the counselor, my number is on the low end, but still in the premutation stage which gives me a 5% chance of having a child with it. She told me about a new DNA test that only Texas does and it checks to see if I have any "AGG's" in my gene. If I have at least one, then my chances go down! I'm hoping I do for my daughters case bc she has a 50/50 chance she got it, and her number could be higher now.