Does anybody have a child with fragile x chromosone syndrome? My child might be affected by this syndrome. We are still at the testing stages, but I am very worried and am trying to find out more about it.
Thank you all!
I have several relatives with this syndrome. I don't know much about it but I would be happy to connect you with my cousin in GA who has a child with it and is very informed.
M. S
My fiance's 10 yr old son has fragile X. I can say first had it is very difficult to deal with becasue it affects his behavior. He is not aware of social norms so he speaks very loudly (almost yelling) all the time! He never stops talking wether it is to himself the TV or a person. He does not follow directions or even try to. He is very scheduled and obsessive, if snack is at 8pm tonight it needs to be that way everyday. With all that said though he is a very intelligent kid. He makes A's in everything he does and his reading level is that of an adult. He is also a notmal child (unlike some kids with autism) he plays with friends, enjoys video games, etc....
We are currently looking for a good therapist to take him to. He currently see's one in school but it is not helping. As a mom im sure you will do fine but if your child does have fragile X I would highly advice you to start working with a therapist early on.
The grandson of my son's babysitter has this condition. Her name is Barbara Wackerman and she runs a daycare in Seal Beach. I'm sure she would put you in touch with her daughter-in-law, the boy's mom, who is active locally in raising awareness and funds.
HI L.,
I worked with a child that had Fragile X if you would like to hear some of the challenges from a therapist perspective please feel free to email me
Hi L.,
I don't have personal experience -- only some knowledge from my graduate work. I suggest that you first wait for your child's results and then get primary information from a genetic counselor and the specialists you're refered to. They will be able to put you in contact with the resources that can offer you help. I also suggest you go to fragilex.org, which is the national foundation for the syndrome. There's a lot of information on there that can help you educate yourself. BUT, please wait for the diagnosis first. There is no point worrying over something that may end up being nothing.
Fragile X is a complex syndrome and can be difficult to explain to someone who has little background in genetics and molecular biology. Pictures go a long way to understanding the syndrome, and I can't really draw on this website! The extent of the syndrome can vary depending on how severe the mutation is, and there may be some difference in characteristics between boys and girls (because girls have a 2nd X chromosome, they may be unaffected or less affected, whereas boys only have one X chromosome, and thus have no back up for compensation).
I hope everything works out for the best for you.
All the best,
R.
