Fragile X syndrome

zigger01

Does anyone know someone with this syndrome??  I have a friend who recently had her son diagnosed as having this.  I've read a lot about it lately but was curious if anyone had any real life experience with it?

 Thanks!

xbrooklyngrl

I thought this post was about me.

Sorry, never heard of it.

stillhoping

The doctors think JM has it, we are to undergo extensive blood work as soon as I am walking again. He has the big ears and space between his eyes as well as the behavior issues, it is often associated with aspergers and or autism.

zigger01

Belle  - I'd like to do something for my friend to help her out but I feel that nothing I can say right now will help her.  Any words of advice?

stillhoping

The best thing I can tell you to tell her is that her child is the same child he was prior to the diagnosis, that regardless of what any doctor or therapist says that her child will be fine. To love him or her, sorry i missed the sex, to hug them and to allow them to do what ever they want to do.

We do not treat JM any different from the other two, he has the same rules, same bedtime and same expectations as far as school goes. He is in main stream class room, and is doing great

 

also tell her to get him therapy NOW. the sooner the better, JM has been in OT and ST since he was a year old, we knew something was wrong just did not know what. 

 

JM has friends, he goes to birthday parties and plays with everyday average kids all day long. He is a very sweet, smart boy. and so will her child be

zigger01

Thanks Belle.  He is only 15 months old but similiar to your son they've known something wasn't right for awhile.  He's been doing OT, PT and ST for a few months now.  

 I'll definitely tell her what you said though.  I think that is what I worry about the most for her...it's almost like I can already see her treating him differently, like he's in a protective shell now. 

Anyway, thanks so much for sharing.  I appreciate it!   Your kids are all so cute!