Fragile X Syndrome
MOST HELPFUL POSTS
Brooke - posted on 06/14/2010
my son has fragile x and has actually passed it on from me hes chromeasome scientifically is r 32 in most cases if a child has a abdonmality its normally gaps between the strends of dna but with my son's condition it has been completley deleted which makes it more rare
This conversation has been closed to further comments
June - posted on 09/06/2009
hi alison my name is june i have lived with fragile x in my family since my eldest daughter was diaganosed at age 14 she is now 31, it is huge in my family, i have a brother ,neices nephews my daughter, my son, me, and now a 6 year old grandaughter, who lives with us,and we r bringing her up at age 54, her mum our daughter lives with us how i describe it is a break in the x and y chromosones, a father cannot pass it to his sons only his daughters but a mum can pass it to both, it is a genetic condition and what we call a hidden disability,no one seems to believe u, u have to fight and fight, to be heard, there is a lot on the internet, but it is genetic so all siblings and cousins etc should be tested, it causes intellectual delay, and sometimes physical, boys can be worse as there is behavioural, as well but in saying that girls r just as troublesome at times as they r not very social people, and dont cope with the outside world i dont think from what we live with as do boys, but no 1 fragie x person is the same my, son has only a small percentage like me, and is married raising a family and very intelligent just doesnt handle emotional stuff sometimes but i am so proud of him and his achievements he is a spraypainter, and is reall y good at what he does he has recently married and his wife has a downs syndrome little girl and 1 other with no disabilities, and he handles it very well, now, as he has grown up with it, but in saying that not without problems in the early years if your son has a full mutation like ours then get all the help u can and learn and learn because u r the only 1 that will be able to get all the help he needs to achieve and be the best that he can be. my kids and my little grandaughter was sent to us for a reason, andtamika our little grandaughter is the most awesome little soul, she is so loving,so hang in there u will get through, my brother went into a home at 7 he is now 47, but there was no help out there then,and we didnt know he had it until my daughter was diagonosed, it opened a big can of worms in my family but in the long run i think it has been a positive thing because they now all have choices,as to what decisions they should make my brother has lived with us for the last 7 years he has been in supported living since he was 7 and i hated but my mum back then couldnt handle him and it was best for him then and her, but i personally would never put mine anywhere except with us, because thats where there safety net is with loving caring family who adores them yes it is not easy but the end result in seeing them grow into happy healthy kids doing what the do best is enough for me, also it is a blood tested didorder it is proven beyond reasonable doubt,sometimes u want to tatoo it to there foreheads so people believe u and it is not there early years so much it is when they r in the education system and cannot cope the older they get so get all the help u can while they r, young because my daughter back then was slipped through the school system and by age 14 it was way to late but u know what u r the best teacher by far, and they will trust u, u will be there everything, so i helped i have helped in some small way and if u need to ask me anything please dont hesitate my 2 neices r on this site 2 and they do a wonderful job with there daughter 1 has a daughter with fragile x and 1 has a son, and they r the most awesome mums so as i said hang in there, oh and soe chidren r known to have like a phtographic memory which is like my brother and son there memory is amazing and that often helps them through, u will experience behavioural problems no doubt but as they get older there is medications out there to help them today, and not turn them into zombies, i dont know how bad your situation is but i wish u all the luck, kindest regards and god bless always june williams!!!
My son has mild mental retardation but the test for fragile X came back negative. How is that possible? Anyone?
There are a lot of possible causes for cognitive disability, or mental retardation. Fragile X is only one possibility. Sometimes you can't identify a specific cause - there may have been damage to the brain during pregnancy, it could be a genetic disorder, etc. More important is to be sure your son has the school supports he'll need to be successful through a well-written and implemented IEP. You don't say how old your son is, so it's hard to refer you to a particular resource.
Melissa - posted on 08/26/2009
I have a son who just turned 15.He was diagnosed with Fragile x at 1 1/2 .He is doing great still struggles with alot of learning.Biggest challenge has be potty training.Man it has been diffucult.He will stay dry during the day but the over night hours are hard.Anyone have any suggestions please let me know it would be greatly appreciated!!!
Janie - posted on 08/20/2009
My son was tested for this, and the basic explanation I got was way above me. I finally got the answers I needed, and it all boils down to a form of mental retardation. I kept one of the websites that I had gotten information from and to me that explained it the easiest..It says
" Fragile X syndrome is the most common known cause of mental retardation and developmental disabilities, with an incidence of between 1:2500 and 1:4,000 births. It is a single gene disorder on the X chromosome that occurs in both males and females, but males are typically affected more severely. The disorder can be passed down through generations in a carrier status, with increasing chances of the gene expanding into the full disorder. FXS shuts down the gene responsible for producing FMRP, a protein essential for normal brain function."
You can read the other information on it at http://www.fpg.unc.edu/~fx/Pages/overvu....
Being its an EDU site you can basically say that the source is credible in what it says
Sandra - posted on 08/17/2009
Fragile X is the only genetic form of mental and physical retardation. All moms are XX Boys are XY Dads give moms an X or a Y in the sperm Moms always give the X if you get a y you get a BOY if you get an X you get a Girl. If a mom has a fragile X and you get a Y The boy will have a problem If Mom has a fragil X andDad gives you an X The child should be a Girl and she will be a carier of Fragil X. Boys are the most effected by Fragil X But a girl can have minor issues Depression ect.
I know this because I am a carrier of fragil X - But some how Both my cildren are not cariers of it. I have a brother who is seriously inpared by fragil X .
Kathy - posted on 08/17/2009
It can be figured out if you have a genetic history done- We did to find out about my son'e disorder( not fragile x) they drew our blood then did a genetic map. They were able to determine that in my son's case it was spontaneous.
Kathy - posted on 08/16/2009
Unfortunately she's unavailable at the moment- so I pieced this together-
Fragile X occurs when there is a mutation of the FMR1 gene on the X chromosome.Normally, the gene makes a protein you need for brain development. But the mutation causes a person to make little or none of the protein, which results in the symptoms of Fragile X. we all have an x gene and it is possible to have one that is not working correctly and show little to no syptoms. Women have more that one x gene(2) so one can be affected and the other 1 is ok. Men only have 1 X gene- so if it is affected then there are symptoms. THe severity of the symptoms depends on how much of the protien is produced People with only a small change(protien production) in the gene might not show any signs of Fragile X. People with bigger changes can have severe symptoms.- Men can not pass the disorder to sons ( they only pass Y gene's to sons) but pass on their X to daughters. Women carrying one copy of the fragile X can transmit it to their sons or daughters; in this case each child has a 50% chance of inheriting the fragile X. Sons who receive the fragile X are at high risk of intellectual disability. Daughters who receive the fragile X may appear normal or they may be intellectually disabled, usually to a lesser degree than boys with the syndrome. The transmission of fragile X often increases with each passing generation. Genetic screening of the parent blood and a genetic history can sometimes help identify potential issues.
as with most issues- the earlier its identified and the individual can start therapies etc the better.
Hope this helps!
Join Circle of Moms
Sign up for Circle of Moms and be a part of this community! Membership is just one click away.Join Circle of Moms