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

My son took the WISC a couple of weeks ago, and while I posted this on the testing board, I feel like I should ask about it on this board as well. He is tested HG, I feel he's more EG, but maybe I'm fooling myself. He qualified for DYS with his WJ-III, but his WISC GAI was 139.

Here are his WISC scores,

VCI 138
similarities 17
vocab 17
comprehension 15

PRI 127
Block 16
Pictures 14
Matrix 13

WMI 123
digit span 14
letter-number sequencing 14

PSI 78
coding 3 !?!?!
Symbol search 9

FSIQ 124
GAI 139

He took both the SB-V and WPPSI at 4 and scored 140 & 139 respectively. The wppsi 139 was with a 30 point discrepancy between verbal and non verbal. His verbal was 147.

He did say that on the block part he went "slow on purpose." He pretends to be characters in books sometimes, and he wanted to be like the bullies in Big Nate and get in trouble. This doesn't explain the coding, but maybe he was just not in a good testing mood.

He's always had "attention problems." He was diagnosed superficially at 5 with ADD, but I homeschool him so I make accommodations as I see the need.

AEH mentioned NVLD as a possibility, and everything but the social aspects sounds like him. Coordination issues, fine motor weakness, etc.

We are looking for a neuropsych now, but I really want to find someone who deals with gifted kids.

The 3 in coding has really thrown me. I don't want to read too much into one score, but at the same time, I want to be proactive.

Does anyone have experience with a scatter like this? How should I proceed?

Thanks!

DD has around that spread but it's between PRI and PSI. PRI was 147 without extended norms and PSI was 94. In her case you can see it because she is slow with written work and hates writing. She has executive funcitoning issues related to ADHD and has very little sense of time. She can't even really eat a meal in a timely fashion because she spends so much time talking and fiddling with things. Today she spent 20 minutes in the shower making us late for school, then screamed at me "I don't have an internal clock, OK!?" DS7 said "yes you do, it's called your brain" (which I thought was hilarious coming from him because he's almost as bad). So my point is that we can see it in everyday life. DS also has a gap but not as big (maybe 30 points between PRI and PSI) and the neuropsych who assessed him said it could cause problems in that he's ready for higher level concepts but will appear "slow"...not a huge deal but accommodations may need to be made. If these aren't things you're dealing with, then I don't think you should be concerned with the score.

If he has coordination issues, look into Developmental Coordination Disorder/Dyspraxia. Wikipedia has a good page and describes how these issues tend to tie together. Kids with DCD often have poor working memories (in terms of remembering what they are doing) and are scattered, and have spatial deficits.

Haha! That sounds exactly like my ds. No internal clock, even with the possession of a brain.

Thanks for the advice!

Oh yes. DS12 has a 64 point spread. His VCI was 152 (no extended norms done) and his PSI was 88.

He had hand pain when writing when he was younger and still has cramping when he writes a lot. He was late to tie his shoes, manipulate buttons etc. His hand writing is neat and small and his written expression isn't anywhere near as complex and deep as his verbal expression. He used to freeze up during timed tests and though he was first admitted to the AIG program in first grade (identified for other reasons by his kindy teacher) due to his math ability, he took minute math tests the whole of second grade and his time never changed.

He was resistant to memorizing math facts, and I don't know why. He's not a lazy child. He despises repetition however, and I have a feeling that early on he learned to hide certain things about himself.

I think I've already mentioned this in the other thread, but just in case I didn't - my ds has a similarly large gap in PSI, although the coding isn't quite as low (but it's low!). Like your ds he also has symptoms that match many of the symptoms of NVLD, but not the social aspects. In my ds' case, the issue is Developmental Coordination Disorder (dyspraxia). Quite a few of the symptoms of NVLD, ADHD, DCD, and autism spectrum disorders overlap - that's why it's better to let a professional sort out what's up before investing a lot of time trying to figure out the diagnosis on your own. Definitely look closely at what's going on with your child - for example, are they having issues with a particular type of academic work, difficulties with fine motor etc - and go ahead and put accommodations in place as you can etc… but don't over think the actual diagnosis ahead of time.


If you can find one that's great, but don't put off seeing a neuropsych if you can't. The neuropsych we've seen does *not* specialize in gifted kids - there is a psychologist local to us who tests children for gifted programs, but not a neuropsychologist who specifically works with gifted children. The neurospychologist worked out well for us - and the psychologist who sees a lot of gifted children didn't have the breadth of testing and background necessary to diagnose DCD vs NVLD etc.


FWIW, my dd who had vision issues scored *below* the 1st percentile on the coding test when she took the WISC (prior to diagnosis of her vision issues). She's fine! The low score was completely unrelated to anything other than not being able to focus on the symbols. With my ds, his low coding score was related to a larger issue that's required a lot more work to deal with… but he's doing really well too. Try not to let the number freak you out - I look at those low scores as data points, not defining points.


Decide on a neuropsych, get your appointment and go from there. In the meantime, think through everything you see that might be an issue or challenge for your ds, so that you'll have your questions and concerns ready to go at your initial neuropsych intake appointment.
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Best wishes,

polarbear

I don't have DS's numbers but he had about a 60 point spread as well. I do remember his coding being 2nd percentile (we tested at 6.5).

We were encouraged to test by the school who thought that he was ADHD-Inattentive in grade 1 (he wasn't). He never seemed to have problems with fine motor. As an infant he refused to let us feed him and so he became a master at picking peas up one by one and would cut up meat with a knife and fork while friend's kids were still being spoon fed (I don't mean that in a judgmental way, just as a we often got stares when we ate in public kind of way). He was also fine with teeny tiny lego that was geared for kids twice his age. He was speech delayed (absolutely no words until we started speech therapy at 19 months which he "graduated" from at age 3). Writing was a very slow and painful process for him. He's still really slow (he's 8) and messy. His written output is like it is from a different kid when you compare to what comes out of his mouth in conversation. He is not fond of memorizing math facts and I think he often figures it out from scratch each time rather than memorizing times tables which of course slows him down. He DESPISES repetition which teachers often confuse with laziness. He isn't lazy if it is "new".

Chay,

My ds sounds a lot like yours!! Mine also liked the Legos and disliked many of the same tasks as yours.

My DS is obsessed with legos. This is why I'm so confused as to why his handwriting is not amazing! lol

I want to add another "My kid, too." My DS6 was recently assessed to have a 94 point spread between VCI (extended norms - 188) and processing speed (94).

Amber - I hope you don't mind a little related discussion. Can we use this thread to explore processing speed measurements a little?

Having done a ton of reading - I have a working hypothesis, but can't seem to find research to back it up. I do believe there is a processing issue. But I don't think that's the only thing going on. I'll give a couple anecdotes to illustrate:

Anecdote 1: DS has a whopping difference between processing speed and VCI/PRI. That does not reconcile with his performance on the "name that supercar" game. This is a game with a picture of a supercar (e.g., Ferrari) covered by 20 squares in a 4X5 grid. You click squares to remove them one at a time. As quickly as you can, identify the car from 4 supplied answers. Your score is a function of difficulty, speed and accuracy.

DS routinely kills this game, beating everybody's score - and this includes car nerds from all over the world. Usually he needs to turn over exactly one square, either in the headlight or tail light area. And let me be clear - the answer is not "Ferrari." It has to be "Ferrari 458 Speciale." Very detailed answers selecting from closely related models.

He also does this when we are driving on the highway. A fancy car will flash by. I ask, "Was that a Lotus?" "No, Mom - didn't you see the door handles? That was a Tesla Roadster. That one fools you every time doesn't it?" (It does.)

This is Very. Rapid. Processing. For context, he also does this with sea creatures and gems/minerals.

So - what gives. My working hypothesis is that these HG/EG/PG kids do have processing issues. But it's maybe not just speed. Or not speed at all. They are also processing an enormous volume of information that flashes into their brains when they observe. They gather in waaaay more information about everything, as compared to neurotypical folks. And they do it instantly. This brings me to anecdote 2, which I think illustrates how this volume factor can slow down ANSWERING, even if it doesn't slow down PROCESSING.

Anecdote 2: While working on a budget, I scribbled a sum ($107+$12). Just for grins, I asked DS if he knew the answer. He stared at it for a long while, and finally answered "They should have the euro in England."

As best he could explain, this is because my Dad taught me to write my "7" with a slash through it, like they do in Europe. This appears to have led to a long string of thoughts, naturally leading through Italian super cars (see above), whose price we often see listed in pounds in British car magazines. DS knew about how many dollars were in a pound, and how many dollars were in a euro, but got stuck trying to figure from that how many pounds were in a euro. He found this annoying and decided they should just use the euro in England.

So - exactly what volume of "stuff" is a kid like DS processing when he sees something like "107+12"?

Hypothetical example of how this rabbit-holing could play out: "Wow - this is the third time in a row that the correct answer on an IQ test is 'c'." That's weird. If it was a coin toss then, you might get the same answer 3 times in a row. But there are 4 possible answers here. That would seem to make 3 c's in a row unlikely. I wonder how I could figure out those odds. I mean, how does this compare to the odds of getting 3 aces in a poker hand. I think Max cheated when we were playing poker yesterday. I didn't see him cheat. But he got three of a kind a bunch of times. He must have been cheating. I don't want to play cards with him anymore. Hmmmm - "Max cheats" is not one of the answers to this question. What was that question again"

Maybe this is some variant of ADD or ADHD, if it reflects inability to focus (bad). Or maybe it reflects ability to pull in seemingly unrelated information from multiple sources instantaneously (good). Or both, but we don't want to squash (good) in the interest of improving (bad).

I'm wondering if any of you folks have talked through this sort of idea with your specialists, or if you know of any research on the issue. My gut says it's a big part of the puzzle. It might be mucking up kids' scores on testing to the extent you are really trying to measure "processing speed" versus "processing speed, assuming only this discrete information on the page is processed."

Argh - must stop writing, and thanks if you are still reading by now. But this is really weighing on my mind, and you folks seem like a truly optimal group to discuss this with.

Sue

Originally, I wasn't going to duplicate my comments on the other thread, but this is a new twist...

Legos vs handwriting: a few notable differences.
1. Legos are the same basic motions each time. Quite a number of different fine-motor manipulations need to be learned and sequenced for handwriting.
2. Legos are meaningful and contextual (you are building intermediate structures that have direct correspondence to your end-goal, with immediate feedback on the effectiveness/accuracy of your fine-motor motion). Handwriting is symbolic and arbitrary. There is negligible logic behind the connection between the visual/fine-motor form of letters and sounds. Therefore,
3. You don't have to memorize the placement of Legos (given the limited pool of motions, which are employed based on the solution to visual-spatial problems). You do have to memorize letter formation, the alphabetic principle, and quite a bit of English spelling, and apply them based on the solutions to language problems.

Just wanted to weigh in as the parent of another kid with whopping spreads. 40 points difference between verbal comprehension and visual perception, 50 points each between verbal and both processing speed and working memory. Her scores ranged from above the 99th percentile to below the 1st percentile. Neuropsych labeled her "NLD-ish" even though she lacks the social component. He said "It's a useful diagnostic concept" and "It's easier than saying super high verbal along with dyslexia, dysgraphia, dyspraxia, math disability, etc." He also labeled her with ADHD-Inattentive which we flatly reject, as do her teachers, her former preschool teacher and just about anyone who has ever come in contact with her... We think he very effectively measured her being shut down due to anxiety.

My DD is s-l-o-w in everything she does. It's like she spends her life slogging through molasses. At 9 1/2 she still can't ride a bike or tie her shoes. She can't write by hand but is learning to keyboard. She can't decode well enough to read on grade level But she loves Shakespeare and history and can remember every detail of every audio book she has ever listened to. She understands the concepts of higher order math but can't remember math fact adding or subtracting to 10. She is in out of district placement at a special Ed school where her day is filled with OT, speech. Wilson reading, 1-1 math instruction along with a reading comprehension group 5 grade levels ahead and enrichment 90 minutes a week because the high level reading group is still below her level.

I recently tried to explain it to someone by saying its like when 8 major highways come together and you have a complex set of flower pedals you need to navigate as you try to connect to the right road. Apparently for my DD the verbal is a direct road through. Everything else, though, has to meander and turn this way and that until it finds the right path.

We went to a well respected general neuropsych who told me he didn't think it was a good idea to see someone who specialized just in gifted kids because he's afraid specialists tend to find only what they are looking for. A generalist was more likely to pick up on bigger picture items. We have another evaluation coming up soon and are going with a 2E specialist the Eides recommended.

I just wanted to let you know you are not alone. I won't kid you - my DD's path is not going to be easy. I think the earlier you can get some answers and start working on remediating the deficits the better.

Good luck!

Great thoughts, Sue and fairly accurate, I would say being the person who thinks about why there are three "c" answers in a row and attempts to figure out whether there is a conscious pattern or not. :-)

Another data point here: DS8 has a 70 pt spread, is terrible with writing, amazing with verbal, and does in fact calculate everything from scratch every. single. time. Timed math facts were the absolute worst in second-grade with a teacher who has convinced him he is not good at math because of it.

My ds is the same. Times tables have been challenging. He just adds to get the answer instead of memorizing. I'm breaking out the flash cards.

Sue and pemberly, thank you for posting. I'm at the library on my phone, I will join the conversation at home on my keyboard.

LOL DS has done some similar things more than a few times and had similar bizarre explanations which make perfect sense if you follow his long road to get there. Of course when they occur during a test they usually don't match any answer keys. I have no idea if there is any research to back up your theory but for my DS there is definitely a bit of that going on.

Thank you for posting Pemberly. These kids really need an instruction manual! It's really hard to know what all of this means, I'm guessing getting some kind of diagnosis will be half the battle. We found a few neuropsychs to call since the tester we used did not think the low coding was a problem at all.

It's different for us, because my DS' learning doesn't seemed to be affected all that much, but maybe because it's still early in his education. He does have problems writing, and he hates it, so that makes it harder. He also can have focusing problems, and he's definitely one to day dream during school, and then hyper focus for hours on Legos or ninja turtles.

Thank you again for posting and sharing your story.

Yes, this is what is tripping me up too! There are times when he is fast, and his learning does not seem to be affected as his total WJ score was 99.9%. He did have low fluency scores, but they were still average. So I think part of the "rabbit trailing" theory could be what goes on for my DS as well. He certainly says things like how your DS was reminded of europe by the 7, but you were asking him a math problem.

I'm very much in the same frame of mind as to not squash down what makes him unique. It will probably be a fine line between encouraging him to be who he is, but also giving him the tools and training to be successful.

One of the issues is that processing speed is, like many other clusters, a symptom, and not a single specific etiology. We can call it processing speed, but what it really is is how efficiently an individual can complete a rote visual-motor/fine-motor task. Many, many factors can reduce performance on this task (I've listed a few of them already, and others have come up with additional plausible explanations).

As with many cognitive profile discussions, it is worth re-centering on the presence or absence of pathology, which, at it's most basic, is simply the question, "does anything about this interfere with being a functional, independent human being, living a happy, satisfying life, or attaining personally-significant goals?" If not, enjoy the diversity of the human experience, and leave it at that.

I could also throw out a few more thoughts about mapping to long-term memory, retrieval fluency, meaningful vs symbolic content, motor sequencing, etc., but they're still only important to life if the answer to the above question is 'yes' to any part.

DD is the same way in that she seems to "over-process" information. So let's say she's playing piano. She will not just look at the first note or meausure and start playing, she will look at the entire piece and notice whatever patterns it has. She notices that the quarter note line goes up 3 spaces. Then she'll say "what's that noise outside" (something no one else would ever notice). I think she drives the piano teacher a bit batty. The other day she said "I hope it doesn't rain tomorrow because today it was bothering me when I had to take a test." She is bizazrrely fast with certain skills, for instance this board game we have that's like chess but involves mirrors and lasers. She just glances at the board for a second and knows immeidiately where the light will shine if she moves a certain piece. Then she goes back to rolling around on the floor, chatting, etc. while she waits for the other player to anyalyze the board and take their turn. It's definitely NOT slow processing in that regard. She has a terrible time with math facts and writing. I remember her advanced pincher grasp as an infant, picking up tiny things. So it's not just that she has poor fine motor skills leading to poor handwriting. She can write very neatly and her cursive looked perfect so dysgraphia seems questionable. I wish I could understand what is going on...why does she struggle with some things but not others? She DOES have ADHD and calms down a lot and can focus better when medicated. I've seen theories of ADHD stating that these folks would have made great "hunters" (vs. gatherers) because of all the information they take in. Now noticing those small "details" is considered pathological rather than a nice survival skill.

It's interesting that so many of us have children like this. I don't have a processing speed score on my DD10 because she took the RIAS, but I also feel like she is a strange combo of lightning fast and distractably odd. I think it actually might be more a question of having a brain that just picks up on a lot of possibilities and can't help taking in a lot of information. I wonder if you asked this question in the non-2E section how many would say their child is like this? (My DS is less like it, though. BUT...he is less creative.)

Any allergy medications involved here?

ultramarina, I found this post from the recent posts and my DS has not been identified as 2e. I didn't even realize it was in the 2e forum...lol! I just noticed the difference in VCI and PSI, which is very similar to my boy's 70 pt spread.

A point of anecdata...

Ours hasn't been identified as 2e yet either; he may be, we just haven't tested him beyond the IQ.

My ds did not have any allergy mess at the time of his test.

We have decided to do an OT eval, as well as an eval with a developmental optometrist. From what I've read online, it seems coding problems are mostly fine motor, so we are going to rule that stuff out first.

Then we'll find an NP to discuss ADD, because at the end of the day, I do still see some in attention on a day to day basis.

The tester did not think the low score and large spread was anything to worry about, which I find odd. I have read that with a spread like that, they aren't supposed to report FSIQ?

Sigh. I find it odd, too.

Yes. With a spread that large, the FSIQ should be reported only with caution, if at all.

Another thing I was thinking about the other day was his wj report said that he seemed to have problems following verbal directions in the fluency tests, and to write down instructions for him, yet coding and symbol search are visual? Perhaps these are just pointing to processing in general?

Well, the tasks are visual-motor, but the directions still involve words. And he has to convert the words into a visual-motor task, which is probably the sticking point. The fluency tasks (all around, both on WISC and WJ) are also relatively isolated--that is, without meaningful context--which is even less suitable for high-verbal kids. The only fluency task that generally favors verbal kids is oral word fluency, especially if the prompt is a semantic category.

He did the worst on the oral fluency, though I would say he's strong with auditory information, he often plays songs by ear on the piano. It will be interesting to see how this all shakes out.
Thank you for explaining all of this stuff!

Amber, My son has very very similar scores. He also got a 3 for coding and a 6 on symbol search. Not sure if this is helpful to you but he was ultimately diagnosed with dysgraphia (it's moderate to severe), motor apraxia (dyspraxia, developmental coordination disorder)and a (and I forget exactly how this was worded) processing disability. He has been fine with math facts both addition and multiplication but those scores are always lower considering his iq and other scores such a math concepts, etc. He has a scribe at school and tyoes much of his work. he gets extra time for tests. He is thriving and doing well with accommodations.

Thank you for your reply! It's encouraging to hear your ds is doing well with accommodations! Dysgraphia or some sort of fine motor disability is probably what we are dealing with.

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...

All very interesting! I love the PDD-NOS quote. . Odd is definitely correct around here.

DS8 tested at the 42nd percentile for PSI and 98th for VCI. He falls down the rabbit hole regularly. I have that habit, myself, so I can usually figure out how he got to euros and quite enjoy the journey his mind took. It's not a great trait for school, however, and I've struggled to help him harness the speed he sometimes displays. I've often wondered about that PSI score and what it really means with a child who can be both lightning-fast and glacier-slow - sometimes in the same minute.

DS8 also has hypermobile joints, which I hadn't paid much attention to until reading this thread, and one of his feet suddenly appears flat. He's dysgraphic and using any tools, from utensils to pencils, is challenging. Shoes are velcro or those curly elastic laces and buttons are not our friends. EDS-H sounds like something I should be raising with our pediatrician. It will be interesting to see how the EDS-H research develops and whether it is the umbrella.

Yesterday DDs piano teacher went from endlessly thinking DD might be ready to prepare for her first piano exam "in another year" to "yes she's ready now, as long as the exam board will let her wear those splints for the exam, I have to check"... It's interesting for me the extent to which this piano teacher is the person who can reliably tell if DD is on or off her medication, how the splints impact, etc. her school teachers are vaguely aware at best, sometimes oblivious. The piano teacher is 100% on the ball.

I wonder if I should have DD sit the Wisc to see just how bad her processing score is...

Ds bass teacher is amazing as well. I just sent her an email the other day thanking her for being such a great teacher. She takes all of his quirks in stride, the good, and the bad.

That Grinity (whom I miss! And Dottie. Sigh) quote is really sticking with me. I homeschool ds, so I know I've been making accommodations without knowing it.

Thanks Amber!
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.

I have to say I agree with myself here. I am going to expand that to all family members, including oneself!

I totally missed this thread. Our DD 13 is EDS-H or EDS type 3. She has a great Paediatric physio who is an expert in the area and also brings a continence physio to town to evaluate pelvic floor with transabdominal US and teach exercises. We have been so lucky as this all cropped up only two years ago.
DD was always hypermobile and had much lower performance scores than verbal scores on the SBV, don't know if that is because of hypermobility or not. She struggles even know with eating utensils and writing and is supposed to have accommodations for the latter at school.
Fatigue and headaches are the biggest problem with schooling, apart from handwriting. The physio stresses an ergonomic set up for study at home, chair, footrest, arm rest for typing, computer on a stand etc. she also runs a weekly class for hypermobile kids. We are very lucky as we are in a rural centre and I think this is amazing care.
The physio is becoming increasingly aware of the systemic issues with EDS in addition to joint issues and pain. Reflux, constipation/diarrhoea, postural hypotension, heat intolerance etc. the immune issues are very interesting and not well described. Certainly autoimmune diseases run alongside EDS in our family, poor immune response to vaccination, a propensity towards contracting respiratory illnesses etc. Hard to know what the relationship is as the underlying genetic factors aren't elucidated apart from TNX in a subset of cases.
Interesting if the disorder is associated with giftedness. Now there is a PhD topic.