Patient Comments: Fragile X Syndrome - Experience


Please describe your experience with fragile x syndrome. Submit Your Comment

Comment from: Moose, 13-18 Male (Caregiver) Published: July 11

My nephew has fragile x syndrome. He is 18 years old and he is now asking about sex. Says he needs to have sex. After all urges still need to be satisfied, we don't know what to do.

Comment from: 7-12 Male (Caregiver) Published: January 15

To the person who said the pediatrician would not order fragile x test because the child does not have the physical characteristics: My son, who is 10, only had the protruding ears and he was diagnosed with fragile x yesterday. Keep trying!

Comment from: 19-24 Female (Caregiver) Published: January 30

I'm a mid 40's female with the permutation of Fragile X. I found out I was a carrier when, my now 20 year old, son was diagnosed with Fragile X at about 6 months. I went thru menopause at about 30 and finally figured out why it happened so early after reading this article. My son is healthy. He does not speak and still has bowel movements in his pants sometimes. He is mod/severely mentally retarded. He became extremely violent after puberty and I placed him in a group home at 16. He has been on several meds for his behavior and is doing okay (not great) within a very structured group home life.

Comment from: Melissa + 4, 45-54 Female (Caregiver) Published: February 03

I am the sister of three brothers and one sister who are all affected by fragile X. My three brothers are the lucky ones, they all live in separate group homes and are doing well. My sister however, is not so lucky. She is not mentally handicapped enough to qualify for MRDD services from the county she lives in but she is not high functioning enough to be able to live on her own without everyday monitoring. Getting her settled into a life since my parents passed away has been really hard. All four of my siblings exhibit very different phenotypes of the fragile x syndrome.

Comment from: jacksns, 55-64 Female (Caregiver) Published: December 14

My mother had fragile-x with ataxia. She lived to age 90, but without a good quality of life. Her thought process was always circular, and it was often hard to understand what she meant. She was mis-diagnosed with Alzheimer's and Parkinson's. We couldn't understand why her medication made no difference - but now we know. My brother has Fragile-x with progressive ataxia and his brain is shrinking. He is 63. I am female, and have always had learning disabilities. Math was difficult, and I only remembered what I wrote down - reading didn't imprint the information in my mind. I'm getting tested soon.

Comment from: curefx, 13-18 (Caregiver) Published: September 24

Our son is 17 years old with Fragile X Syndrome. He is moderately cognitively impaired. He can also be very violent. He has lived in a group home since the age of 12 as I was unable to control his behaviors. I had to place him for the sake of my own safety and the safety of my daughter. I visit him daily. He's doing alright but it's not the life I ever imagined for my child.

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.

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.

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.

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.

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.

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.

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.

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.

Comment from: Toni, 55-64 Female (Caregiver) Published: November 10

I have a 10-year-old son that has fragile x syndrome. My son is very loving. He understands signing, and he understands English and Spanish. He doesn't speak. He doesn't know how to read or write. He is the most loving kid I have ever worked or been with. I wish I knew how to help him more.

Comment from: nancy t, 25-34 Male (Caregiver) Published: October 07

My son is 25 years old and has fragile x. He has been having a difficult time for the past year with his dad passing away. His behavior changes all the time and the doctor keeps changing his medicine but I dont know if that is the problem.

Comment from: 13-18 Male (Caregiver) Published: February 08

My son of 16 continues to have a bowel movement on himself. He was diagnosed with fragile-x one year ago. He has an IQ of 58 but is very aware of the regular surrounding, such as grocery stores, our vehicles, our families home. We have lived in our home for 15 years, shopped at the same stores, went to the same school, and pretty much kept the same routine. As soon as I think he has stopped the BM's he gives me a BIG surprise. I lost my temper today. He did it at the grocery store.

Comment from: alovingmom1985, 0-2 Female (Caregiver) Published: September 13

I am a 25 year old mother of 4; sadly my son passed 3 years ago from fragile x as he had a severe case that included a heart defect. I now have learned that my youngest daughter is also fragile x, and I am struggling with the fact that I did not know I could have been tested and prevented such a difficult life for her. Since her diagnoses I have done hours upon hours of research and feel so inspired by her relentless bravery. I believe that children with fragile x are god's gift to strong woman. I believe they will be our miracles and I couldn't imagine a day without my precious children, no matter how difficult it has been or will be, if they can remain as strong as they do then so can I.

Comment from: rahul, 7-12 Male (Caregiver) Published: May 19

My son is very shy and loving. He shy's away from people and doesn't interact much. His language is not fully developed but is showing a lot of change with speech therapy, occupational therapy. Being patient with him helps his behavior. We praise him a lot to get his work done. We have done homeopathic treatment for a year. It did help him but there are lots of issues which needs to be worked on like his speech, attention deficit, social behavior.

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