Fragile X Syndrome

I am pretty close with a lady who has a grandson with Fragile X. I guess they do a lot of fund raisers and organize ways to get the public involved and aware that FX exists. From what she tells me, FX can cause serious mental and physical delays. It took her grandson until he was 2yr old to walk.

We don't have the walking issues but the Dr said today they are only on a 4 month old level with speech and fine motor skill development. They did another test today to confirm that it is Fragile X but that is what the Dr is leaning towards and then our CW was like Are you SURE you still want to adopt these children....ugh!!! YES!!!

Fragile X is not as scary as it sounds. I work with developmentally disabled adults and they are some of the most amazing people I know. With a good support system, you special baby will achieve great things.

As with any syndrome their is a range as to how it affects each individual. Some can function relatively high while others notsomuch. Autistic tendencies can run high with some too. How old is your little fellow? I don't know your story but if there is a girl in the sibling group she can be a carrier and also be affected but girls are much less affected cognitively than the boys due to the two x chromosomes.

pwheatle- all three are boys twins 10 months and a 3 yr old, I have been trying to read about the syndrome and I know how a child develops with anything depends on the support of the family. I have a special needs child that we worked hard to not be in special ed at school. I just read though about the autism and that is somewhat scary since I have not dealt with anyone with autism.

So it is the three year old with Fragile X? I'm assuming the twins have been tested as well? The transmission of the syndrome is fifty percent with each pregnancy. With autism of course as you would know there is a range as to how kids are affected and again it will depend on where your little one functions cognitively as well. THe 'lower functioning' he is the more the autistic stuff can make itself known but can also be a blessing too. The need for routine and sameness, the self stimulating behaviours might be present, maybe some tactile defensiveness, sound sensitivity, extreme dietary preferences but for some if they are told the rule about something then that is the rule and deviating from it would not be likely. Believe it or not that can be very helpful in increasing functional skills. I'm not sure if I'm making sense or not but if you are planning on adopting the boys I'm assuming you have had some time to get to know him and who he is outside of the syndrome and that ultimately is who he is. As you know all ready raising a child with special needs is that they are so much more than their diagnosis. And also since you have done so in the past you have strong advocacy skills and the tools to help him be all that he can be. Congratulations!

I don't know anything about this condition but wanted to send you well wishes...and I hope you find the info you're looking for.

I'm pretty sure it's the twins.... I don't know anything about fragile X, sorry. Just wanted to lend my support.

My son has autism and I know that that is a big concern with Fragile X. I can't speak to the other issues in Fragile X but I can at least tell you what to expect with autism. My son is very delayed. At 2 years old he had cognitive and verbal skills at about a 9 month age. He is almost 5 now and functions at about a 2 year old level. But he makes great progress all the time. He is constantly improving and he is a loving sweet beautiful boy. He may or may not improve to the point of living on his own one day...there is no way to tell. But every day that goes by things get a little easier for him. He goes to a special preschool for autism and we have a play therapist come in the home and work with us as a family to help him speak and do more things. If I can help answer anything at all just ask.

I remember reading one of your posts about one of the twins getting abnormal genetic testing results. I'm sorry... I have studied about it but I have not visually worked with kids with it yet. Good Luck! The kiddo's with special needs like that are the most loving individuals.

Thanks everyone. It's actually all three boys that we think may have it. One twin has been tested we are waiting on the Results. The other twin is in line to be tested. Cps wants the 3 yr old tested because he does show some signs like EXTREMELy delayed speech and hyperactivity. I know the boys and mom very well since they are my family. I know I can do this it's just shocking. I suppose I can hope it comes back negative but I'm doubting it will.

My son was tested for fragile X, he doesn't have it he has the lesser known dup 15 (duplication of a part of the 15th chromosome). I know it is scary....take a deep breath-he's the same little guy you had yesterday.....sometimes knowing is harder than not knowing. Unique.com is a wonderful place to find people. They will help to match you to people close to the same chromosome issue. Much like this forum, you will find BTDT people. You will learn a different language, find a whole different system of support. Here we talk about bios and visits and workers; there they talk about typical kids, dr visits and specialists.Surfing the Internet tends to give you worst case scenario. There are many closed groups within Facebook that will be better support. If you haven't read it yet, search for the story 'welcome to holland' it helps. I have been told my guys (5 in Friday) would not walk, talk, the picture was pretty grim.....yea, well what do they know. They both walk and talk. They will both go to kindergarten in fall. Sonny boy (dup15), is autistic but it is just something to work with....like a third nipple or an extra toe. There are MANY services available to help. Will it be easy......if we wanted easy we wouldn't be here :). Benefits to having a diagnosis....your IEPs will bea little easier as the 'need's a given with a diagnosis, you don't have to have the child fall behind before they can qualify. It also gives you framework. Things to strive for (to prove them wrong) and other things to watch for. For example, my son had days where he could do things and two days later that skill was totally gone.....once I got the dup15 diagnosis, I found that silent seizures were common. It seems when he has had a seizure, he loses skills and has to relearn them. Not wonderful, but it is an explanation.Now that this is long and boring.....hang in there. It will be what it is, take a deep breath, take baby steps. It is ok to walk away for a day or two and pretend you are 'normal'. Pm me if you want. We 'unique' parents need to stick together.

Thanks mom2fatwins, I may pm you when we get the final diagnosis. I personally would rather know, I am a prepares for everything. I do not like the unknown no matter what it is. I have already joined a fb page and I watch so many videos that I can see there is a huge range of Fragile X. I will look up that website too. Thanks again.