Any Information on Fragile X?

Updated on May 30, 2008
H.M. asks from Anna, TX
4 answers

Hi, everyone! I am looking for people that have direct experience with Fragile X. I think my daughter may have it (the 3 1/2 year old). My mom shows the signs of the adult cases (tremors in the hands, depressed, anxious, impatient, hostile, and moody). My daughter flaps her hands, sucks her thumb, chews on her fingers, rubs her blanket between her fingers, and loves to rock in rocking chairs for long periods of time. She has ALL of her social skills and no developmental delays or physical characteristic differences. I know the only way to really know is to do genetic testing, but she is on CHIP, and I don't know if they will pay for it. What should I be looking for? Am I just being paranoid? TIA

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C.A.

answers from Dallas on

I didn't read one symptom that didn't sound completely normal for a 15 month old if that's the Dr. your speaking of! Are these extremely exaggerated and that's why you're concerned? I'm in nursing, and haven't heard of this. I think I'll look it up. But, of all my children-they all did these things at that age! Some children love to rock back and forth to self-soothe. They also use thumb or paci. sucking and the hand gestures to do this to. She has her social skills developing on track and unless your noticeing abnormal, exaggerated behaviors or ticks, I'm not sure you should be worrying about anything. Ask her pediatrician what he/she thinks-if they suspect something and submit to CHIP, they should approve.

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A.K.

answers from Dallas on

You didn't mention how old your daughter is, but if you haven't seen any developmental or social delays at this point I wouldn't be concerned. The Fragile X is commonly associated with autism and is usually accompanied by other signs/symptoms. It is also much more common in males than females as the second X chromosome in females are often unaffected and the can compensate for the affected X chromosome. They can test 2 ways - chromosome or DNA. My understanding is that the testing ranges between $300-$600 and is typically NOT covered by insurance. You can always call CHIP and see what they say, but I would think it is probably not covered. If I were you, I woudl try very hard to not worry unless you start seeing speech, developmental or behavioral issues.

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K.D.

answers from Dallas on

Hi H.:

I have a nephew that has been diagnosed with Fragile X - my sister-in-law belongs to a group and I'm sure she would be happy to speak with you - she also has familiarity with CHIP. Just PM your # and info and I'll get her to give you a call.

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B.T.

answers from Dallas on

H.,
I have three grandchildren who have been diagnosed with Fragile X Syndrome.A boy, 4 1/2, a girl 3 and a boy 1 year old. Frigile X causes a multitude of physical and mental delays. Girls are not as severly effected as boys since the mutation is on the X chromosome. Girls have 2 x chromosomes so the good one can compensate for the damaged one. Boys, having 1 X and 1 Y chromosome are more severly effected.The only way to be sure is by genetic testing, It would be worth your while to persue the testing even if it is costly.If she is positive there are support groups who you can turn to for help.You NEED to know if this is the problem. Knowing this will not only help you to cope, but it will help her! If she is positive she will need an abundance of love, understanding and patience. If you think things are hard on you they are even more difficult for her. The best way to help her is by educating yourself to know how to handle things. God bless, and I will be praying for all of you.
B.
For I know the plans I have for you declares the Lord. Plans to prosper you and not harm you.Plans to give you hope and a future. Jeramiah 29:11

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