Fragile X Syndrome

[brandonsmom]

My 8 yr old son, Brandon was diagnosed with ADHD a little over a year ago. I have felt for some time that something else was wrong. He hasnt officially been diagnosed but before my son's psychiatrist dropped Peachstate she told me that she felt he had a sensory integration dsyfunction. His ped saw him and immed mentioned Pervasive developmental disorder. SInce then i have taken him to a prior psy to see how i can find out. His teacher sent home a note with a booklet on Fragile X Syndrome, she said her 2 boys had it and said Brandon exhibited the physical and mental features and to check it out. This syndrome is inherited and is a genetic abnormailty. He will see ped lster in the week and i will ask about genetic testing. The syndrome mimics ADHD and these kids have other probs like autism, autism like behaviors, sensory integration dysfunction. At my sons prior school his teacher sent me a thing on the sen pro dys and he exhibited many of the signs. This really came to light when my daughter was attempted to mess with him and put a ice cube in his underwear, he didnt even flich. That really piqued my curiosity so i got the biggest piece of meat out of freezer and put it on his back, it didnt bother him. I turned on the hot water and he put his hands under hte water and didnt pull back his hand, like his hand wasnt getting the message from his brain "OUCH" to pull his hand back. I cooked fries in the oven yesterday and i put the hot fries on a plate to cool. He went straight to the plate and picked up and handful. I grabbed him and said didnt that hurt and he said no. When its cold outside he wantds to wear a short sleeved shirt and swearshirt in hot weather. He requires asst in the bath as he dont know how to properly clean himself. Same thing with toothbrushing. Does anyone else have these issues. I didnt see a thread for this so i chose what he was currently diagnosed with.

[charliegirl]

Good luck with getting the diagnosis. I hope whatever it ends up being, you find out soon.

I know very little about fragile X although I did have a friend who's daughter has it. Her daughter is in college right now and doing quite well the last I heard.

We've lost track of each other since she moved several times within a few months, so I can't ask her anything specific until she contacts me.

I hope this encourages you some.

[katiekat]

I do not have a child with this dx however I was a one- on -one for a year for a little boy who did have Fragile X. I do know that it is a lot less severe in girls than boys.
The child I was with had extreme anxiety and a lot of obsessive compulsive behaviors. He was also pretty violent.

[crazyhouse]

Brandonsmom I've had expierence with Hyper Sensory Intergration Disorder. Jake goes thru situations of not likeing certain foods in his mouth. He also has issues with certain textures on his hands like snow or marker. There are a lot of other things that set him into a panic as well. I can't think of them right at the moment.

As for the fragile X syndrome, I would like to know more. It sounds kinda like my husband. He has an extremely high tolerence for pain. There's not much in the world that can discomfort him. Breaking bones does not phase him. I have heard a few stories of him walking in his moms house asking for a band aid for injuries that would need lots of stitches and stuff that needed to be extracted by a Dr. that he thought was cool to watch riggle around under his skin!

My mother in law always told me there were days she wanted to put that little boy in a bubble!

I hope you find some answers to your questions.

[brandonsmom]

Well he went to his psychologist today and she told me to call the Merke Institute to evaluate him. at some point during the session he "shut down" as she called it. He hid behind the couch and was sshaking all over and he was extremely stiff and rigid. She feels there may be signs of early onset Schizophrenia because he says he can see things and heqars things no one else can. I feel sick because he needs help now, the Merke Inst cannot see him for 6 mths though.

[jj]

Oh I so feel for parents who are in your shoes. The wait is ridiculously long! Would you be able to drop everything to go to the institute if they had a cancelation? Sorry, I wish I could be more help.

On a postitive note, my sister's best friend is Schizophrenic and you'd never know it as the medication really works well for her. They have been friends for well over 13 years and the only thing that is "unusual" about my sister's friend is that she is a pack rat.

I do hope something happens that you can get your son in sooner.

[katiekat]

Crazyhouse, Fragile X has very distinct physical characteristics. Boys with fragile X have very long faces, prominent ears, and a prominent forehead as well. They are also usually flat-footed and have enlarged testicles.

[jill]

Well this is the first time i have heard of this. Good luck with the testing.

[jfla]

brandonsmom,

You may have already seen this site for the national fragile x foundation: www.fragilex.org/html/home.shtml
there is a lot of informationthere. A DNA blood test can be done. perhaps the site has some info about getting help before six months. Hang in there. Help is out there, it is just so hard to have to wait not knowing. Take care.

[crazyhouse]

Ooh poor guy! I'm so sorry to hear your visit to the psychologist was ruff! I hope there is some sort of way to get him in sooner. In this area it never hurts to be assertive and insist that he just can't wait 6 months! That is just ridiculous. Some Dr.'s don't like certain insurances and are forced by thier practices to accept them so they make it a rule of thumb to set appointments way back to try to get rid of people that aren't desperate! If that is not the case I would try calling and asking on a weekly or daily basis if they have cancellations to see if they can get you in! Good luck!