Patient Comments: Fragile X Syndrome - Experience

Please describe your experience with fragile x syndrome.

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: JoLesa, 3-6 Male (Caregiver) Published: August 04

I am a 27 year old mother of two, one boy and one girl who are both affected by Fragile-X. They are the most precious things god has ever granted me. I think that the hardest part of the diagnosis isn't so much a "why me" but the guilt I have never stopped feeling for not knowing before I had them that I was carrying the gene. They are the first and only ones in my family affected by this. I just can't get past the worry of what their life may turn out to be. Mom's always feel bad when a child gets hurt and she is helpless at that moment, but I feel that way everyday when I watch them attempt things that seem so hard, and I can't help. It's just different because that feeling lasts all day every day. My heart breaks for them when I see them around peers who do treat them different. Defiantly one of the hardest things I have been through, but also amazing to watch them learn and do something new or better everyday.

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Comment from: jdsmom56, 19-24 Male (Caregiver) Published: February 22

I have always wondered why my son was mentally impaired and had so much difficulty in school. I remember in the hospital when he was born, he wouldn't wake up when the nurses brought him to me to be nursed. They would wipe his face with a cold washcloth to wake him up to eat. He was also late talking. He had so much difficulty in kindergarten, the next year they put him in special ed classes and he stayed in those classes through most of his school years which upset him. In some ways he was very social and his speech therapy aide said he scored high on social skills and he didn't go to that therapy very long. I could always tell though that he couldn't read other people's emotions well. In school, he was pretty good at reading, but is still terrible at math. He has large ears and a long face, but is about six feet tall. His dad is only 5'7" and I am 5'6". My son is 24 now and has gotten into trouble with law off and on because he migrates towards friends who don't tease him as much as regular kids. However, they tend to use him as a result.

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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

Viewers share their comments

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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