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liloleme
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17 Mar 2012, 2:53 pm

If you child has ever been called flexible (or you) do they sit in the W sit or in "odd" positions. Has your OT said you kid has "Loose joints" and "Low muscle control" or have you just noticed, always dropping things, maybe complaints of pain in the joints or being tired. Also has your child ever dislocated or gotten a lot of bruises and you have no idea where they came from.....can not open doors (sometimes a good thing LOL) or jars, ect.
If this seems to run in the family you could have EDS type 3....or if you have skin issues perhaps another type, there are six, one you would have known from birth and included dwarfism. There are also many other associated diseases like POTS Syndrome, Marfan syndrome, Graves disease....I could go on and on. Anyway, look it up and see if its a possablity as its common in Autistic people and can cause severe pain later in life.
I know I have Ankylosing spondylitis but I am also going to be tested for EDS type 3 as I have all the symptoms. Just thought Id let you guys know.....I know its cool, (this is for the kids) to wrap your leg around your head and do strange things with your fingers including purposely dislocating them, it can be so painful later in life that you have to live most of your life in a wheel chair.
I just wanted to let people be aware....dont want to scare anyone...sometimes its just loose joint syndrome but still you need to be careful. I remember my daughter was born with her feet in her face and I had to double diaper her to keep them down. My brother was born with his feet turned in and my Mom was force to push them every time she changed him until he cried.....he played track and football but he is now in his later 30s and starting to have pain.



Washi
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18 Mar 2012, 1:45 am

I'll just say when I took a karate class in my early 20's my nickname was "the rubber band lady" (because I could stretch like one). However for more than the last decade I've experienced blinding neck pain and carpal tunnel syndrome unrelated to any injury ... I seem to slowly be getting a grip on it though with diet changes and having had a bad wisdom tooth removed (I think that was the trigger, I lived with it for much too long) I'm much better now than I was a few years ago. I'm proportionate but short enough to be considered a dwarf. So I relate to what you're saying. I also have a friend with ASD boys who have the sort of problem with the feet you mentioned where they're turned inward.



liloleme
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20 Mar 2012, 12:10 pm

Washi, there are 6 different types (although they sometimes overlap) of EDS. We are assuming I have the hypermobility type, which is type 3, although you can still have some heart or other issues with it. Its basically really cool when you are young (unless its very severe then you start having dislocations at birth...some parents are accused of child abuse) but can cause serious and very painful problems when you get older. The type you are thinking of with the dwarfism and other deformities like scoliosis is one of the most dangerous. Its the one where you aorta can just explode one day. However there is also Marfans syndrome which makes you very tall and thin that can also be dangerous and include cardiac issues.



Washi
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20 Mar 2012, 4:12 pm

I don't necessarily think I have this, I think I have very mild CHARGE syndrome but relate to the similarities.



liloleme
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21 Mar 2012, 8:53 am

What Im saying is that the hyper mobility syndrome does not include dwarfism and other things you mentioned. There are 6 different form. We think me and my family have type 3 with some cardiac issues that may or may not have anything to do with Marfans (the very tall type) which includes cardiac or the dwarfism and scoliosis which includes very fragile veins and arteries. Not saying you have it...I put up the post as it is common for Autistic people and we thing that people in my family have it.



Washi
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21 Mar 2012, 12:29 pm

Right, short stature and hyper mobility are common in CHARGE (along with some specific birth defects I have), maybe it is one of the overlapping conditions. I'm just saying I relate because I'm double jointed and now that I'm older a couple of my joints have caused me a whole lot of pain. I only have one joint in my neck that seems to be messed up though and that is bad enough, I know you are much more affected and marvel at the obstacles you must have to overcome every day caring for ASD children.



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21 Mar 2012, 5:17 pm

I have EDS type 3 with classical symptoms (the stretchy, translucent skin). It looks like both my kids have it as well, one ASD and the other ADHD. I am NT but do have some ASD traits. I've never specifically heard that EDS was more common in people with Autism, but Sensory issues are very common with EDS.

When I took my daughter to the genetic clinic to diagnose EDS, they were shocked that she seemed to get the triple whammy. She is also a carrier of Charcot-Marie-Tooth disease (CMT-1X), along with EDS and ASD.

Anyway, the EDS definitely causes problems as you get older. I've developed arthritis in my 20's from doing "tricks" when I was younger and being so clumsy. My great grandmother has had issues with her skin splitting open and bleeding from just bumping into things. If your kids do "w" sit or get into any weird positions, definitely try to discourage it. I'm having to watch my daughter a lot closer because she is a sensory seeker and really enjoys crashing behavior. Poor child is always covered in bruises, but luckily has only ever partially dislocated anything (her thumb) and I was able to pop it back in for her. She also has an extremely high pain tolerance.

Also it is a good idea to get a diagnosis or get it ruled out because it is genetic and because of the potential heart issues. My kids have to be monitored more closely when/if on stimulants or certain meds because of this.



liloleme
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22 Mar 2012, 1:03 pm

After I am sent to the Geneticist (my husband is a Genetics Professor actually so he is interested in all this) then they will look at my kids. The doctor at my kids therapy center say that my daughter has loose joints and low muscle tone and my son is a lot like I was when I was a kid, dropped his pencil all the time, had difficulty writing, tired easily and he has one elbow that bends backward and one knee and his fingers. I can get his feet over his head but hes not as flexible as my daughter in the hips, knees, ankles and feet (I used to be but since I developed Ankylosing spondylitis and have fusing my legs are not as bendy but I can still bend both my knees backward and I can do the ballet stand even though I never took ballet). All of this is so common in our family...all my scars all tear open. I was impressed with my last surgery because they used that new glue instead of stitches so it was a nice neat line but a year later its opened up like a stretch mark....and dont get me started on how horrible my stretch marks look.
We used to think we were just cool and bendy and klutzy (due to the bruises, my mom even got accused of child abuse with my younger brother).
My joints are getting looser the older I get. I have to pop my shoulders in several times a day and I have to take a huge amount of pain pills due to my Spondy and my EDS. I cant actually say that I definitely have it but with all the problems we have in our family its pretty obvious.
Im sorry about your daughter. My son has a lot of pain, a lot of headaches and his back hurts, I use one of those vibrating finger massages on him....we also have family foot rubs :lol: . Your daughter is like mine, does not feel pain like most people do....still they suffer from the tests. I just hope that since we caught this early with them that we can get some PT so they wont end up like me.



Washi
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22 Mar 2012, 6:22 pm

I used to get a lot of mysterious bruises growing up but grew out of that, my Mom still gets them. And I have the high pain tolerance, my partner is always complaining that his hands get scalded when he uses a sink after me because the very hot water is still in the pipes.



liloleme
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25 Mar 2012, 12:44 pm

My daughter just dropped her iPad right on the bridge of her nose for the second time today (this one actually hurt her, its strange some times things hurt her and other times they dont)....a little bleeding but no bruising as of yet. One time she fell in the shower and I was so scared she had broken her face but she just had a nasty bruise. I took her to the doctor and she said she was fine. I felt so bad that day, she was only 4 at the time and all excited to go to school and she slipped and I didnt catch her in time and she fell right on her face on the edge of the shower. She didnt cry until I freaked out.
She lays on her back and holds everything with her feet because her right knee hurts and she wont prop things up and obviously she has back issues because she rarely sits. However some days she does move her legs a lot and she will spin for up to an hour or run up and down the hallway when she is upset. Even when she is at the computer she will put her legs up on the desk and sort of lay in the chair. I keep trying to correct these things but its hard when I cant lift her.
I have heard that the reason you have such severe pain when you get older is because your tendons tear and they are not able to heal.



Washi
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25 Mar 2012, 6:36 pm

We just got an ipad (love it), we put a big soft foam case on it.



liloleme
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26 Mar 2012, 8:19 am

We have a case with a strap for her to carry it and we have bought others, they are all soft but she keeps taking them off....Im going to glue the darn thing on there!



ReineDeLaSeine14
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29 Sep 2012, 9:17 am

I have Classical Type (type 2) but wasn't diagnosed until I was 19. I have neurological impairment, stretched organs (but my heart is okay), severe vision impairment, ASD, and autoimmune disease.

If you have symptoms...get checked by a geneticist. I saw rheumatologists all my life for my JRA but they were useless when it comes to the EDS. I firmly believe if I had been diagnosed earlier I wouldn't have half of the problems I do now.



InThisTogether
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29 Sep 2012, 8:11 pm

My friend's autistic daughter has EDS3. She is a young adult and is already having problems and pain because of it. I had never heard of it before. Interesting to me that more than one person posting here has it, though.

Nice of you to bring it up. I am sure my friend wishes someone would have said something when her daughter was younger.


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