Patient Comments: Fragile X Syndrome - Experience

Please describe your experience with fragile x syndrome.

Comment from: supamook, 7-12 Male (Caregiver) Published: August 27

Hi, I am a 41 year old mother of 5. I have two girls and 3 boys. I never knew about FX until my 4th child was born. He has a mild case of FX. He didn't walk until he was 2 1/2 years old, and was fully potty trained by 7 1/2. He now goes on his own and does a lot of things on his own. He is going to be 11 years old. He likes doing laundry and playing in the kitchen sink. He can dress himself, feed himself and usually clean up when prompted to. He has been nothing but a huge blessing and I understand what every mother goes through with a special needs child. I am blessed that he is not any worse. He does get emotional at times but never angry enough to hurt himself or someone else. Everybody at school just loves him to pieces. I already have had my other children tested and they are not carriers of FX. I did get pregnant with my 5th child unexpectedly, but thank God she was not effected by FX.

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Comment from: janice, 45-54 Female (Caregiver) Published: August 27

I have a son with fragile x syndrome. He has taken to his bed the fast few months because he cannot walk or stand. His anxiety is quite high sometimes but he is on medication to help with it. He said his legs are soar when he moves. He was at the hospital a few weeks ago but they could not tell me what they think is wrong, so they are going to do an MRI scan to see if they can find anything.

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Comment from: Edith, 55-64 Female (Caregiver) Published: September 20

This is fascinating! I had not heard of fragile x syndrome, but have an aunt who had 5 children, all with various degrees of mental retardation, the boys much more serious than her one girl. Two of the boys died very young. I am superior in intelligence, but have mitral valve prolapse, and had difficulty getting pregnant, with three miscarriages. My mother probably had early ovarian cessation, as I am an only child, and she never used birth control. I plan to be tested for the chromosome, as I have three daughters, two of whom have children, and two of their children (one each) seems to have some of the characteristics, physical, emotional and mental, listed in the description. It will be helpful for our family to understand this syndrome better.

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Comment from: marie, 45-54 Female (Caregiver) Published: January 11

I have several male cousins and one female cousin on my father's side with fragile x (all from one aunt). I was tested for it and was told I did not carry it, which meant my sister was also negative. It was difficult on the entire family; my father and mother tried to help, but it was difficult for all of us. My female cousin with fragile x lived with me for awhile; she had difficulty learning and needed close supervision. Another of my female cousins (the child of another aunt) who did not show any signs of it does have a son who apparently has fragile x. I assume that cousin only had one copy of the gene, since she has no symptoms. It was extremely hard on my aunt and is hard on my cousin; one of my male cousins has already died from heart complications due to fragile x. Anyone who believes this gene may be in your family. I would strongly recommend being tested. I did not decide to have children until I received a negative result. It was extremely difficult trying to help my cousin when she was staying with me.

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Comment from: Positive , 19-24 Male (Patient) Published: June 04

My family suffer from fragile x but it says that a father cannot pass on fragile x to his sons which is completely untrue, all of the females in the family are not badly affected except one, but she only has a slightly big head. It is not that big! My grandfather and one of his sisters received fragile x while his brother and other sister remained normal and had normal families with no physical or mental traits associated with fragile x. I do not suffer from any behavioral problems and in that regard I'm unaffected, but I have development delay, elongated face and a broad forehead. I hope this will be of benefit to you, in finding the probability of people affected and in terms of the cure. I hope that there will be a cure for the physical traits in the nearby future so that it will not affect future generations.

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Comment from: 7-12 Male (Caregiver) Published: August 05

I have a child that fits all the criteria for fragile x, yet we cannot get our pediatrician to order the test. She feels that because he does not fit the physical characteristics that he does not have the condition. We have been through extensive testing and our son is learning disabled, has speech problems, borderline I.Q. and has ADHD and mood instability and certain autistic characteristics. We intend to keep pushing because along with our son there are other boys in the family tree possessing these same characteristics. To any parents out there experiencing what we are going through: keep pushing and educate the physicians. You are on the same web page as I because it fits. It isn't the "diagnosis du jour" as is bipolar or simple ADHD. You know your child best.

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Patient Comments

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Fragile X Syndrome - Symptoms Question: What symptoms do you or your loved one experience from fragile X syndrome? How do you cope?
Fragile X Syndrome - Carrier Question: Did you ever undergo genetic testing to see if you are a fragile X syndrome carrier?
Fragile X Syndrome - Educational Options Question: Do you have a child with Fragile X? Please discuss the educational opportunities in which your child has participated.
Fragile X Syndrome - Social and Emotional Issues Question: How does your child with Fragile X deal with social situations? Please share how you cope with your child's emotional issues.

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