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Fragile X

(20 Posts)
AngP2585 Tue 23-Jul-13 19:08:35

I don't know what's worse knowing or not knowing what is wrong with your child.
Let me know what the result says once you get your own head round it!

jogalong Tue 23-Jul-13 07:12:55

Your Ds just sounds exactly like mine. Reading your post and the frustration in it felt so like my situation.
That's why now i think Ds might have fragile x

jogalong Tue 23-Jul-13 07:10:57

Ds is delayed in his development too. Has very poor speech although he is makin progress. Only in the past few weeks i can see progress. Otherwise we rarely left the house with him. It was a nightmare. And yes very hyper active too. Doesn't even sleep a full night.
His ot is not convinced he has autisim. Dr did blood tests for genetics including fragile x. And after reading up iv gone on a tangent. My head is wrecked waiting on a diagnosis.

AngP2585 Mon 22-Jul-13 22:14:45

You should wait and see what the results say from the test it could be anything at the end of the day, lots of children even normal children can be a nightmare. Hope everything goes okay for you.

AngP2585 Mon 22-Jul-13 22:02:43

We have loads of problems too, my son takes numerous temper tantrums he is very hard work. He does not like waiting for anything he wants everything right away. He tends to put everything in his mouth it's a complete nightmare. He needs to be supervised all the time, he has no sense of danger. He is also very hyper active, never stops!!

He never listens to a word I say and does nothing he is told, it's very frustrating. Overall he is very delayed in his development.

Hope you get an answer, did the consultant suggest your son could have fragile x?

jogalong Mon 22-Jul-13 21:30:22

Its not just the car for us its everywhere. In the house, in shops etc. Everything is an ordeal. My Ds will be starting play school in Sept and will have a special needs assistant for two days a week. We live in Ireland so system is prob different over here.
Should get our results in around two weeks. Dreading it.

AngP2585 Mon 22-Jul-13 12:56:06

Thanks for your reply. Hope you don't have to wait too much longer for the test results.
It's a nighmare trying to get him into the car, he is so much bigger for his age and stronger, it's hard work trying to get them to do things. If it turns out the result is positive then at least you know and can understand his behaviour better. Can't believe there is someone out there that goes through the same ordeal in the car as me!!

AngP2585 Mon 22-Jul-13 12:41:57

My son has just turned 3 years old. I live in West Lothian, Scotland. At the moment he attends a child development clinic every 6 months. He has an OT,SLT and I have someone from the learning disabilties team. I find his behaviour the most challenging. He is walking he started walking about 18 months and he is coming along with his words now.

How is your son? Does he attend a mainstream school or does he have a specialist school placement?

jogalong Sat 20-Jul-13 23:47:33

Iv just read all of your posts and your sons behaviour sounds so similar to mine. We don't have a diagnosis like you but had bloods sent for fragile x a few weeks ago and are waiting on the results. The more i have read up on it the more my sons symptoms are sounding like fragile x.
Initially we thought Ds whose nearly four years old had autisim but our ot is just not convinced. He has a lot of behavioural problems, speech delay and significant development delay. He has a few sensory issues also.
His behaviour is our biggest challenge and i go through all the same stuff as you have described in the car. Usually me holding him down to strap him in or carrying him from the car to the house. Iv always a few war wounds at the end of the ordeal.
Anyway all i can do is wait for the results. Sorry Im not much help really

jogalong Sat 20-Jul-13 23:45:25

Iv just read all of your posts and your sons behaviour sounds so similar to mine. We don't have a diagnosis like you but had clones sent for fragile x a few weeks ago and are waiting on the results. The more i have read up on it the more my sons symptoms are sounding like fragile x.
Initially we thought Ds whose nearly four years old had autisim but our ot is just not convinced. He has a lot of behavioural problems, speech delay and significant development delay. He has a few sensory issues also.
His behaviour is our biggest challenge and i go through all the same stuff as you have described in the car. Usually me holding him down to strap him in or carrying him from the car to the house. Iv always a few was wounds at the end of the ordeal.
Anyway all i can do is wait for the results. Sorry Im not much help really

harry13 Thu 18-Jul-13 20:14:52

Yes. I have a 13 year old son with Fragile X and know lots of families and have lots of resources for you. Facebook has several pages regarding Fragile X, pages for different countries too. How old is your son, where do you live. I can help you or you can get help from your own community.

Jeanie

AngP2585 Tue 16-Jul-13 21:37:07

Thank you I will try out your suggestion. Fingers crossed it works!

mymatemax Mon 15-Jul-13 17:13:09

I used ds2's visual cards & when he was safely strapped in to his seat he could swap his card for something he liked.
It did take a lot of practice & repeating the process before he learned the cause & effect but he got there eventually.
Once he has learned the process it should be possible to use the same system for all sorts of situations.
Sort of combining the visual timetable with a reward system

AngP2585 Mon 15-Jul-13 16:02:16

He does not seem to have sensory defensiveness. He could get into his car seat himself if I let him, but he will climb all over the back seat and try and get into the drivers seat and that's a nightmare getting him out of there to say the least. He thinks everything is a game he finds it all funny.
I have tried using visual cues like pictures of what's going to happen next because he finds it difficult with transitions from one place to another but it works just the same as telling him we are going home. He gets very angry and takes really bad temper tantrums and that's when he starts to lash out with the biting or the grabing. He also does it when he gets overexcited when he sees someone in the family he was not expecting to see in that place. He must have it all set out in his brain that he should only see certain people where he is used to seeing them. I continually say to him 'Use gentle hands' but does not seem to make a difference. I have spoken to everyone involved in his development. His SLT, OT, Clinical psychologist and the learning disablity team and unfortunately the suggestions don't work for him. The only thing that has worked they suggested was when I tried to get him into the car he would climb all over the seats and refuse to sit in his car seat and again he would lash out if I tried to get him back in. At times I just feel at the end of my tether with some of his behaviour.

I will speak to his SLT and get some of the sign along/makaton symbols from her to see if using the stop sign would work. Open to all suggestions!

Ineedmorepatience Mon 15-Jul-13 13:19:31

I would recommend saying "stop" instead of no, you can use the makaton sign for stop to which is just a hand up like a policeman stopping the traffic iyswim.

You can add in Stop hitting or stop kicking too later if you need to. Ime saying no doesnt work well.

I agree about telling him you are going to touch his straps and maybe you could even take a photo of the straps to show him before you touch them.

Visual prompts work well for lots of children with autism and you could certainly not do any harm by trying them.

Good luck smile

Does he have sensory defensiveness? There pupil I worked with did along with fragile x and he found it very hard to be touched/people being close and if he was surprised from behind he'd lash out too. We explained what we were doing when we were face to face, never approached him from behind. If it was something he hated doing like teeth brushing we asked him to help.
Can he get into his car seat himself? That would be half the battle with that.
Modelling 'gentle hands/feet' instead of lashing out with those and giving him something to bite instead of you?
Is he under an OT? They may be able to help a little. I'm sorry I can't give more advice and apologies if you've done all that already.

AngP2585 Mon 15-Jul-13 09:26:44

Thanks for your reply. My son has just turned 3 years old he is very hyperactive he never sits still for a minute he is always on the go. The main issue I am having is with his behaviour he seems to get over excited and lashes out and bites. He is a lot bigger for his age than other children of the same age he is over 3ft tall, he is also very strong. He tends to get very over excited when I strap him in his car seat and bites my arm really badly and grabs at my face. I have shouted No to him, this just seems to make things worse. I have tried to ignore it but how can you ignore a child bitting you and drawing blood. I just feel I am unable to disipline him. He currently has a clinical psychologist and she has said he will not understand and try using distraction. My son is very hard to distract, he does not really show much interest in toys or books he will just throw them away when he is in a mood. Also his poor attention span does not help he fleets from one activity to the other.

Any advice on the lashing out and bitting would be gratefully received!

Hi Angie, I used to work with a couple of pupils who have fragile x if that is of any help?

PolterGoose Fri 12-Jul-13 12:42:08

Hi AngP and welcome flowers

I understand that Fragile X often presents similarly to autism? Lots of us have children with autism and other related conditions, and lots of us have experience wirh difficult behaviours, so perhaps we can help?

AngP2585 Fri 12-Jul-13 12:22:30

Hi there Just wondering if anyone else out there has a child with Fragile X syndrome. Having a few problems with my sons behaviour and looking for advice?

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