has anyone heard of fragile x?

[Dara]

Someone has just told me to do a check to see if Sammy has fragile x. DOes anyone here know much about it?
Thanks,
Dara

 

[tiredmommy]

I believe one of our member's difficult child has Fragile X. Here's some info:
http://www.fragilex.org/

 

[Ltlredhen]

I have a nephew that we were told has Fragile X syndrome. I don't know much about it but I believe you detect this with genetic testing.

The part of our family that has this child is estranged from the rest of the family so I'm not much help to you. I do know that in this case the child is mentally handicapped with no speach and very limited communication skills.

Donna

 

[Dara]

We were told that it was something to look into. So we are. I know that it seems from what we have read that he definatly has certain traits but he has traits of lots of things! SO who knows. I want answers but would prefer to be told I am crazy...However we know He has issues!
Thanks! Dara

 

[smallworld]

Dara, Donna is right -- Fragile X is diagnosed through genetic testing, which involves a blood test. If there is even the slightest chance that a medical professional thinks your difficult child has Fragile X, then you should absolutely have the blood test done. It might help you in your journey to discover what's going on with your difficult child.

 

[BusynMember]

The only way to tell is genetics testing. It resembles autism. Could be he has a form of autism, but not Fragile X. You won't know if you don't test. My son had a whole batch of genetic testing.

 

[Dara]

We are definatly going to do the test. On one hand we want answers and on the other hand we dont want there to be anything. Obviously we are not in denial but since we have no true diagnosis at this time, our brains are not processing that this is a lot more serious than we had first thought. I am really trying to come to grips with it. Especially since noone else sees this behavior and everyone pretty much thinks that we are certifiable for thinking that anything is wrong with our child other than spoiling him or not "Disciplining"him. I would love for time out to work or redireting to work or yelling to work but it doesnt. He doesnt care. It is like he gets in this mindset and once he reaches rage status which is instantanious, you cant reach him. He is somewhere else. I dont know, I just want to figure this out so maybe we can enjoy life together. That is all I really want, to go to the park or just play with him but right now that is not possible.

 

[BusynMember]

Dara, has he seen a developmental pediatrician yet? Or been evaluated for "at risk" childhood interventions? Do you see any delays? What makes you think it's Fragile X? Autism resembles Fragile X. My son had the genetics testing because he was adopted, exposed to drugs in utero, and had some dysmorphic features, but the tests ALL came back normal. However, he is on the autism spectrum, albeit quite high functioning. Nobody would guess he has any form of Autism Spectrum Disorders (ASD), thanks to lots of early interventions. His started in infancy due to his birthmother's drug exposure.We got him at age two. Lemme tellya, the earlier the child gets help, the better the outcome. I can't believe that my once raging, frustrated, "out of it" son is now a verbal, happy, contented teenager. And the teenage years are usually hard!!! He still has some issues, but he lives a full life. At age 2.5 any diagnosis he got would be tentative and subject to change, however, all interventions could help him for his entire lifetime. At 3 kids are eligible for early education if they have special needs. I'd look into getting him an early diagnosis (even though it may change with time) so that you can get all the help for the little guy that you can. Take care :smile:

 

[totoro]

My husband has a distant cousin who has Fragile X and my mother in law freaked out when she found out... but once we did research we realized the genetic link was on the non-related side of the family.
But if there is a chance it is good to know the facts.

I know it is hard to hear all of these possible diagnosis's and it is scary to think that he could have a label put on him. It was really hard for my husband to come to terms with our difficult child and her diagnosis. I was a bit more ready for it due a serious family history... but husband and his family have issues but don't want to face up to them nor deal with them and have been this way forever.
Midwestmom is right, the earlier the better, and hey maybe they would come up with something that you can handle and don't think is so horrible... like it is just sensory issues... you never know. But it can hurt to not find out.
It really does get easier, I never thought I would be comfortable thinking or saying my daughter has Mental Illness but it does get easier and I am OK with it. I am here to help her.

 

[Dara]

We have been in therapy and testing since he was 10 months old. At that point there Noone would give a diagnosis. I always knew that this would be the telling year. He is almost 3 and has baffled everyone with his behavior. The neurologist doesnt know, the therapists dont know...We decided to take things into our hands and try to find someone who does know. We just got an appointment with a neuropsychologist and we sent in the application and fees for the developmental guy now we are just waiting to see how many months we have to wait before we can get in to see him. We also spoke to the school district to have him tested for speech there so they can work on that when he turns 3. Now we are nervous but at the waiting end of things which stinks. That only leaves you to think and thinking isnt always good when you are waiting...

 

[BusynMember]

Dara, it's hard to wait for appointments. When we put my son on a waiting list (ahem) it was SIX MONTHS. We kept telling ourselves there wouldn't be a six month waiting list if it wasn't a good place to diagnose our son. As it turned out,they still didn't diagnose him right, because he was so young, BUT we at least were able to get him interventions. Their "autistic traits/ADHD/ODD" got him in early preschool, which REALLY helped him in every way possible. I think, at his age, the interventions are more important than the diagnosis because he's so young and things keep popping up when they're older. If he has a speech delay, get him into speech. If he needs PT/Occupational Therapist (OT) get him that too. If you feel he'd do well in an early child development preschool, fight to get him in. The earlier the issues are addressed, the bettr. My son was misdiagnosed until age 11, BUT he had such good interventions, he is just a totally different child than we ever dreamed he'd be. Yes, he raged, bit himself, bit us, banged his head, echoed instead of talking, was hyper off the walls (which got him the wrong ADHD diagnosis) and he did not respond to normal discipline. If we put him in "time out" he threw his chair. We all didn't sleep for two years because he didn't sleep. Fast forward to age 13 1/2. He sleeps, he's calm, NOBODY believes he was ever dxd.with ADHD (he has morphed into a couch potato), he speaks really well, he's almost at grade level in school, and nobody even guesses he's on the high end of the autism spectrum. He actually does better medication free. There is hope, and you're willing to fight for your kid--the hallmark of the best sort of mom. I think you're doing the right thing. Just hang in there. And come here, if you're having trouble waiting. Meanwhile, good idea to have the school test him for possible early intervenions. I give an "A+" in parenting :smile: So many are in denial and hold off getting help!

 

[Dara]

Thank you so much for that note midwest mom.I have seen many parents who are in denial of their childrens issues. I feel and have always felt that it is a disservice to my child and not helping anything. SO much of the time I feel like the biggest failure in the world, especially since I am a preschool teacher. Todays latest incident doesnt help. You know when the poop is flying in the room it is a bad day. I have to make myself laugh at all of this sometimes because it gets so depressing. I am deperatly trying to figure out a way to change his diaper and get him dressed without the wresteling match and without getting beaten. The new plan is this: I take the battle out of it. Instead of going in and changing and getting dressed we will go downstairs eat.. and hopefully he will eventually let me change him (Optomistic thinking here!) or he goes to shcool as is and they have agreed to help out in this area. I guess as he was thrashing me and his poopy diaper was flung in the air I thought, I really cant do this anymore, I get to frusterated and angry because the entire changing/getting dressed process should take no more than 5 minutes. I changed diapers for a profession I should be able to handle this... Tomorrow is another day tomorrow is another day.....

 

[SRL]

Just because one is a high school teacher doesn't mean the teen years are a breeze for you as a parent. It's always harder with your own children because the whole interaction is different on the homefront.