Hyperextension

[waverly]

DS's OT keeps bringing up the fact that she thinks he has hyperextension in his arms, I think she means his elbows.  So she says he can do a lot of the things that they are asking him, but that they are taking it slow and working on them because of the hyperextension and not wanting him to get hurt.

Interesting how yet another physical things is going on with his body.  I know practically nothing about hyperextension or what causes it.  We will see PT next week, and PT and OT are working together on the arms. I guess I don't know how it plays into what she is working on him with.  He has not has an injury or anything like that. I am not sure how the elbow (beyond the fact it's an important joint) plays into the table stuff she is doing with him.  Or how he would injure himself doing the hand type exercises. 

I know I just have to let it play out a little bit, but does anyone have experience with this? I have to read the notes again, but I don't recall the ortho mentioning this in the exam.  

I guess it just took an unexpected turn since I thought we would be focusing more on motor planning and sensory and attention.  I mean we are still focusing on those things, but the thing she mentions the most is the elbow.  Also surprising that the PT never mentioned it either.  

[akafred]

I have "loose joints" with hyperextension in my knees especially. I suspect I may have Ehlers-Danlos Syndrome (I fit most criteria), but I am not pursuing it at this point in my adulthood.

[sakoro]

I have hyper flexible joints (especially my elbows). I have to be mindful not to overstretch during exercise to avoid breaking down cartilage over time. I’ve had a few ankle injuries but no serious impact on my life.

Judging by reminders/ warnings against overextending in yoga classes, quite a few people are hyper flexible and tend to overextend. I don’t know if your son’s condition is more severe than typical, but it is something that you can learn to live with.

[auntie]

I would run it by the doctor. Does he otherwise have hypotonia? Sometimes the two travel together.

If he truly has hyperextention, the doc might want to run some genetic testing to R/O EDS and similar conditions. Some variants of EDS has serious and progressive complications which need to be followed.

[waverly]

Jan 4, 2018 6:33:25 GMT -5 auntie said:

I would run it by the doctor. Does he otherwise have hypotonia? Sometimes the two travel together.

If he truly has hyperextention, the doc might want to run some genetic testing to R/O EDS and similar conditions. Some variants of EDS has serious and progressive complications which need to be followed.

It was suspected hypertonia in the ankles but PT decided it was due to that retained reflex and stretching. It's gotten much looser.

Which doctor? Do I go back to the orthopedic?

He had genetic testing in utero but no idea what they tested for except DiGeorges because he had markers. It was negative.

[auntie]

DS's dev pedi identified his hypotonia, although I wonder if you DS would be better served by a physiatrist who might be able to connect the dots if there's something there.

Unless the genetic testing was done specifically for EDS and like conditions, it wouldn't turn up. TBH, this is an area that is constantly evolving as new sequences are associated with different EDS variants. My niece has been through these multiple times as new gene sequences and variants are identified. They haven't been able to come up with an exact match yet, but there is clearly something EDS-like going on. She had a lot of sprains and dislocations as a sporty little kid, but over time got into bigger trouble with major joint dislocations. She's currently recovering from a should stabilization surgery- her second.

[waverly]

auntie , good to know. He hasn't had any sprains or dislocations yet. I was holding off on sports while we addressed the ankle for fear of injury. The arm stuff wasn't even on my radar until now. He did break his hand a couple of years ago (hairline fracture)falling off a pretty low playground equipment onto a rubber playground. I assumed it was just the way he fell, but perhaps the elbow had something to do with the way he landed... And he has had lots of bruises, 1 time with stitches, and smashed his front baby teeth in (luckily no damage since they were the baby teeth). Just a clumsy kid in general, and now it is all coming out as to why.

We don't have a dev pedi for him since the only thing he was behind on was the motor skills, and we saw Ortho, PT and OT for that. We haven't gotten any farther with that, but more information may come out/ more doctors in the future depending on what continues to be uncovered.

[akafred]

^This is a primary reason I'm not pursuing anything at this time for myself. Plus there really isn't much treatment specific to the joint laxity/hyperextension beyond what I already know and deal with regarding arthritis and dislocation. But gosh it is tiring to constantly turn one's ankles and pull one's shoulder out of joint when putting dishes away.

[cam]

I have EDS, so if you have specific questions about EDS and/or joint hypermobility, feel free to ask, but I'll go with the short answer for now...

Joint hypermobility can be problematic for some people, some for their entire lives while others develop problems later in life. Meanwhile, some people with joint hypermobility can go their entire lives without problem.

The bruising you mentioned may of course be due to the clumsiness, but I will also note that actually bruising easily, not just having a lot because of a lot of standard causes, can be associated with EDS. I'm by no means suggesting your LO has EDS, but if there are other hypermobile joints along with other EDS symptoms, then it is worth considering. Clumsiness can also be associated with EDS, but it can be associated with many other things too, so it isn't exactly helpful at indicating one way or the other.

As for EDS, most of the types can be diagnosed with genetic testing, not that it would have been included in prenatal testing without a family history to warrant looking for it. However, hEDS can not be diagnosed from genetic testing as they haven't located it yet. Many people do get the hEDS either diagnosed or confirmed by a geneticist though, especially if other types of EDS need to be ruled out (or in) first.