Fragile X Syndrome Member Introductions


#41

My nephews have fragile x and autism.


#42

Hello folks.
My son has fragile X and lives in a Steiner community where he works in farming. He is 36 and has a really good life. I remember well the struggles (and the rewards) when he was small, but am thankful that he has found a wonderful place to live a productive and happy life with good friends.


#43

Hi my name is Azma, I have two children with Fragile X full mutation. I really just want to see how other people are going with their kiddies.


#44

hi,my name is tammy, i’m a mother of 6. five of the six kids have fragile x syndrome. 4boys 1 girl so i try to learn as much as possible when it comes to fragile x syndrome


#45

My son was just diagnosed with fragile x and his doctor started him on risperdal…I wanted to connect with other parents of fagile x children to get some advice about this…and to see what medications other parents are using if any at all…I would sincerly appriciate any advice…
I’m a first time mom. I don’t really have anyone to talk to about any of this.
Meaghan


#46

i had a5 years old chiled with fragile x


#47

I have two sons with fx.


#48

My son is 18 months old and is diagnosed FXS. I want to learn more about FXS and how to help him.


#49

New step-son is 13 and has Fragile-X. Have been living with him for a year. I am hoping to find tips on how to handle his behaviors.


#50

I am a carrier of Fragile X.


#51

Just discovered both of my small children have Fragile X


#52

Hello! I am a graduate student at St. Joseph’s College in Connecticut, pursuing a Masters in Special Ed. As part of my classwork, I am to explore an Internet discussion board for parents of children with a Disability.

I selected Fragile X Syndrome because I want to know more about it. I know it is closely tied to Autism and it is a growing community. I have a couple questions directed to parents:

  1. What are some of your unique challenges and joys that parents of children with other disabilities may not experience?

  2. How has this chat room been valuable to you?

Thank you.

Betsy H


#53

Hi, I am the mom of 3 beautiful daughters, ages 12, 5 and 4. My 4 yr old, Haley has FX. We live in Fresno, CA. Thanks


#54

My boyfriend has a 16 yr old son I am certain has fragile x. But no one seems to care about getting him tested or what his future is going to be like because of his LD and behaviors. I am a registered nurse with mental health background and I am very concerned.


#55

my children have been diagnosed.


#56

I have a 3 year old little boy, Kyle, with FX. I am interested in talking with others about the joys and the struggles of raising a child with Fragile X!


#57

My two year old son was diagnosed on Monday with fragil x syndrome. I had never heard of this disorder until Monday when we met with the Genetic Doctor. His neurologist says that he is MR he doesn’t know to what degree because he is still to young. I am confused and would like to learn more about this syndrome.


#58

HI My Name is Mark, Iam interested Fragile X.


#59

My name is Michelle and I have a child that was placed with me by the state and he seems to have a lot of these symptoms, he was diagnosed as having autism several years ago, but to me it isnt autism he has the facial and ears protrusion, he is always biting his clothes, nails and chewing anything he can get into his mouth, he is almost 11, he is very very hyper, he doesnt have good motor skills, he makes no eye contact and if we make any changes in plans he looses control, the only thing is that he is very good at reading and he is very intelligent about odd things, and has a very good memory, he isnt very social or good at making friends, but he is a very loving child, but alot of times he shows no emotion like if he does something wrong and he knows it is wrong and he knows he has to go into time out, it just isnt a big deal to him, he will do it over and over again. just some info about him, and maybe other people can give an opinion to me on this… Thanks


#60

I am a doctor and i would like to get a feel of families of kids with Fragile x care for their children on a daily basis