Gifted Issues Discussion homepage Forums Twice Exceptional 60 point spread between VCI & PSI

My DS also had a huge point spread, 60 points or so. We notice he is much better at fine motor things if he is not using a tool. For example legos and playdoh do not require a tool. Also he is not too bad at touch screens, though I think a little slower or clumsier than many kids his age. It had been explained to us as fully due to dsygraphia/DCD that was just amplified with the addition of the pencil/implement. OTs have been trying to integrate his sides and develop his core strength and so on. With no visible progress that I could see.

But then finally we saw a doctor who diagnosed him with loose or hyperextensible joints, in which some or all of the joints are able to bend past the normal angle. In retrospect some of his difficulties are due to this. He does also have difficulty with motor planning or just personal planning in general, add type issues, and he's not the strongest looking person. So for him it's multiple causes. If you are built faintly like a marionette (that would function best if someone was holding them up), then even mild ADD etc is going to effectively be a lot worse. Another term applied to this is Ehlers Danlos, sometimes used to describe anyone with loose joints, but more usually used to describe a person who either has more marked bendiness or other associated issues.

While my DS scores high on the "Beighton score" and clearly fits into the syndrome category, it's really not something one would notice just looking at him: he's not going to win a yoga contest, and lots of children are quite flexible. Many of the photos even of mild degrees of joint laxity seem extreme compared to him. However, specifically when he holds a pencil and attempts to write one can see his little fingers curving noticeably in ways mine do not when I write. Actually just holding a pencil looks okay, it's when he applies it to the paper (pressing down) that I see bending to his fingers.

So something to look into if legos/playdoh/ipad comes noticeably easier to him than writing/forks+knives.

This is my son, too. He also has a diagnosis of Ehlers Danlos. He has the same exact issue of the "legos/playdoh/ipad com[ing] noticeably easier to him than writing/forks+knives" His gross motor coordination did improve though with some intensive OT to integrate, cross the midline and develop his core strength and so on. However, it did not help at all with fine motor or his dysgraphia. With my son it is also very much not something one would notice just looking at him and many of the photos even of mild degrees of joint laxity seem extreme but he can and does "click" his just about all of his joints.

Sometimes I wonder if our kids have a disorder that just hasn't been 'discovered' yet. So, they get all of these diagnoses because they are the best tools/labels we have right now but they are not really the right thing. I don't know.

I have hypermobile joints and have never been able to hold a pencil normally. I remember my elem. school teachers "trying"...but were never successful. They made me write with one of those triangle pencil grips. I remember the other girls' nice handwriting and mine looked babyish in comparison. But I don't think it was ever as bad as DS's. My writing is fine now but my hand does hurt if I write too long.

I can bend my thumb all the way back to touch my forearm and when I broke my elbow, I had to have PT to try to get my arm to straighten out (for a while it was stuck at a 45 degree angle). Since my unbroken elbow bent backwards to some degree, the PT had problems figuring out what is "normal" for my arms because they are not like other peoples'. I suspect DS is the same way but I'm not sure to what extent. I'm not going to try to force his thumb backwards, for instance. He is definitely low tone and that is related to hypermobility. He still can't jump off surfaces more than 2 or 3 feet tall without his legs collapsing. Strangely, his firsts cousin is exactly the same (but worse), but the cousin is on Dh's side of the family, not mine. Whatever DS's issue is, it's probably hitting him from both sides of the family.

So this is very interesting, my son has eosinophilic esophagitis which is often linked to ehlers danlos. He is relatively flat footed, and Drs have made comments about his loose joints.

Fascinating how this stuff is related.

I'm sure I've commented before how bizarre it is the number of HG / hypermobile kids there are on this board, considering the predicted rarity of both.

I'll come back to post more later.

Wow. This is interesting. I am hypermobile and I suspect my ds12 is as well.

Amber I think that being able to play the piano by ear will have very little relationship to following oral instructions and oral fluency. I am reminded of my DDs first OT eval where the OT said to me, while explaining her results in the visual tests, "I can tell from this that she's amazing at Where's Wally and can't read". Likewise she's got exceptional hearing, but has auditory processing issues, excellent eyesight but has very unbalanced ability to process visual information.

I have spent a lot of time thinking about the picture of the kid who is gifted, usually 2E, bendy, socially odd, a weird combination of fast/slow and distractable, because I've got three and they each present a little differently, and I read this board and see the patterns and connections with other kids here.

I really unwell at the moment so I am not thinking clearly enough to pull all of my random thoughts about this into anything useful and cohesive. But I sort of agree with this"


My personal guess is that EDS-H is the umbrella, I think it's underdiagnosed and the range of issues it causes in kids is not fully understood. Our geneticist, our paed, and various specialists that spoke at the EDS conference I attended in July, all clearly know things about EDS that aren't in the diagnositic criteria and aren't clearly talked about in most articles: that there is a link with ASD, that gut issues are rampant, they know that there is a link to continence issues, to weird immune and autoimmune issues.

A quote really often comes to mind for me is from the intro to book that, sadly, I can't remember the title of, but the author mentions that she and her husband used to joke that what PDD-NOS really meant was "Pediatrician didn't decide - neurologically odd son"... I can not tell you how much I relate to that, I have only daughters but they are the epitome of that statement. Everyone will acknowledge that there is SOMETHING going on, multiple somethings, but it's so freaking hard to pin down.

EDS comes with a strong degree of "neurologically odd", in fact pretty much all the major systems of the body are odd...

Some practical points that those of you with a hypermobile child may not have heard or considered:

1) research shows that boys get less bendy in puberty and girls become more so and are at highest risk for an injury that will lead to the scary down spiral into severe EDS during their tween and teen years. This is presumably directly related to women seeming to be more symptomatic than men.

2) a huge percentage of kids with EDS have continence issues and their parents may be unaware. We knew our 8yr old had issues, which we had put down to her ADD and just not paying attention to needing to go.

2a) At the conference I had already realised her incontinence might be EDS related and then one of the adult EDS patient speakers mentioned that when she was diagnosed with ADD and put on to stimulant medication as a young adult that on the 2nd day she became continent for the first time in her life. This blew my mind because this is one of the measures we use for determining DDs dose of ADD medication - just enough to keep her continent... This woman also commented that her singing voice changed (for the better) when she started medication. I certainly know that my DD has much better control of her whole body on medication. We struggle with having her on medication, because just like no-one would realise she's hypermobile, no-one would suggest she has ADHD - she's a pleasant well behaved kid.

3) children report fatigue as the worst symptom, not pain.

4) If you've got a child struggling with using tools - pens, cutlery, etc then I highly, highly recommend Oval 8 splints. They are helping my DD SO SO much. This was something no-one ever suggested to us, I learned about them at the conference called our hand OT and asked for them and DD loves them, so does her piano teacher. Really, really worth while. My DD wears 6 of them - the middle three fingers of both hands.

5) I think there is a real tendency for these kids to be late bloomers - or rather to look great at home as little kids, struggle mightily for most of their primary school years (elementary in the USA) and then to start to function steadily better as they integrate and overcome their various "odd" issues... This was certainly the case for my eldest and either the middle child is going to do the same thing or she's just less gifted than the first two tests suggested. Only time will tell but I suspect that she's going to upswing somewhere after 9/10yrs too, like both her parents and her older sister did.

6) Grinity used to say something like "Never underestimate the ability of a gifted mother to compensate for her 2E child's issues". Amen to that. I am sure this is part of why hitting school is such a rollercoaster for so many of our kids.

My son and I are bendy EDS/gifted oddballs.

It is weird that there are so many of us here. I remember reading late one night about EDS and came across an old study that noted one of the subjects, a boy with EDS, was a precocious child who was speaking in an adult like manner at a very early age.

Perhaps one of our brilliant kids will figure it all out for us.
DS has recently expressed an interest in genetics. Not because of EDS though; he wants to be an animal hybrid like on Chima. He is a goofy kid.

MumOfThree - I am glad you enjoyed the conference. I would like to go to one sometime. I will have to check out those splints. My hands have been getting sore and DS has a lot of trouble with cutlery. Thanks for the tip.

I love reading everyone's thoughts, opinions and experiences ... Particularly, because we (my family) are so alone in real life with regard to this. But here? Not so much. it's great being able to "chat" about it, compare notes on what has helped and just generally be less alone in this. I love this board. <3 Thank you all.

Well isn't this interesting... My DD was also diagnosed with eosinophilic esophagitis this summer. We were told she had hyper mobility in her joints when she first had an OT eval at age 5 but don't recall ED being mentioned.. Not to say it wasn't but she has received such a laundry list of diagnoses over the years that particular term may have just gotten lost in the mix.

I have long thought that there had to be something bringing all these things together - it's unreasonable to have one kid with so many seemingly unrelated issues. Hmmm...

Very, very interesting discussion...