Fragile X Syndrome Support Group

I would print out the symptoms list from NFXF website. Highlight the things you see in them that are on the list. Make sure the doctor knows that FXS is a spectrum disorder so just because the child doesn't have ALL the symptoms doesn't mean that he doesn't have it.

That website has awesome information so I'd print out the page on how the DNA test is more accurate than the chromosome test as well.

If that does not work or you have tried that email Randi Hagerman at the Mind Institute and plead your case. Maybe she can refer you to someone in your area who will help you. Her email is randi.hagerman@ucdmc.ucdavis.edu.

Good luck :)

Insist. My son, who had an ng tube chronically vomited blood. Sometimes so much he went into acute respitory distress. They told me it was common with ng tubes. I knew that wasn't it. I wanted a scope done. I let them calm me down over and over again. He was 12 pounds until he was two because what was causing it was a hiatal hernia THE KNEW ABOUT, it was congenital. They told me it would never require surgery. They were wrong about that, too. He has FINALLY started to gain weight. He just hit fifteen pounds on his second birthday. Don't let them calm you down.

You can get a referal from your kids doctor and they can get you in touch with someone who can test them . also try dr. randi hagerman on the NFXF web site.or email her diretly at randi. hagerman@ucdmc.davis.edu also heres some phone numbers You also try my cousin who works there Lorraine Ruiz clinical nurse at ucdavis mind instutute tel# (916) 703-0314 I hope this has helped. Jacobs mom

i live in Phila, Pa. I can only tell you that I went to my children's pediatrician and describe some symptoms and she had blood drawn and sent to a lab to be tested. So go to your childern ped.

My son's pediatrician gave me several number of neuropsychologists. I made an appt with the neuropsych and she ordered blood work for my son. That's how the Dx was made.
Good Luck!
Aleise

I am in the same boat! I just joined this support group for exactly that "support," and what do I find first...someone going through a similar situation....hooray!

I live in California, I too am a foster parent. One year ago I had two siblings placed in my care--a 10 year old boy and 6 year old girl. I was told they both were diagnosed with "severe emotional disturbance." This diagnosis was made due to their many placements, abuse they suffered in those placements, and their extreme adverse behaviors. However, I see things totally different. I got no support from social services. Finally after 6 months, I adopted--both were legal orphans due to their parent's rights were terminated and their potential adoptive parents changed their minds. So the process of adoption was quick and somewhat uncomplicated.

Once in my control and care. I took my son off of the many psychotropic medications he was on--especially the 800 mg. of Seroquel--the 800 is not a typo....did I mention he was only 10 years old. Crazy.

He has done well without all meds...he currently only takes 80 mgs of Adderall.

His behavior and actions and appearance seems to fit FXS, but I seem to be at odds with his therapist...who by the way diagnosed him with SED when he was four. I'll spare you all the details.

Okay...now we are at the part where I made arrangements for his being genetically tested.

I went to the doctor and explained my concerns and feelings....Doctor agreed! He began the process for a referral to the Children's Hospital in our area for Genetic Testing....This just happed last week. The referral process should be complete by the end of the week and then I can make an appointment for him to begin his assessment.

When I went to the doctor...I had all the information and made sure I was educated extensively on FXS...also, during my research, I found where he should go for testing.

If the doctors you are taking them to are throwing up road blocks, try a new doc...Call the Centers for Disease Control and find a local genetics doctor or clinic...It's so difficult with foster children because we know so little about their histories--especially their genetic histories.

I would love to discuss this with you further. I feel so relieved to know that someone is experiencing a similar situation and can truly understand what I've been going through this past year. I would love to chat with you further. if you would like, please feel free to email me.

Take Care
Sandy