Gifted Issues Discussion homepage Forums Twice Exceptional Developmental Coordination Disorder/ Dyspraxia

My son was only able to get a referral to a geneticist when I wouldn't agree to scoliosis surgery without him being checked for an underlying condition. He is 15. He had been previously diagnosed with developmental coordination disorder by a neuropsychologist who tested him all in one day even though he was getting a migraine and even though we had tried to get testing done over more than one day because of his endurance issues. He was tested because I wanted documentation of his handwriting disability just in case he ever needed accommodations for academic testing. When I told the neuropsychologist that some of the test results didn't make sense and I didn't understand how he could act in musical theater and learn and do dances with half as much practice (because of the endurance issues) if he had a "coordination" disorder she told me that people can have "splinter skills" and she would not listen to anything else I had to say. That is the kind of "in-network" or in other words the less expensive, clueless doctors we had to see.

We have homeschooled since my son finished kindergarten because he was reading at a 5th grade level but the teacher thought he should be held back because he wouldn't color in the lines and had trouble with fine motor skills. He could not get OT or accommodations because he was not failing, but instead academically advanced.

My son could write legibly for about five minutes but his hands would hurt and writing would become sloppy and he would just refuse to write any more. That never changed, even though he took piano lessons to strengthen his fingers and used squeeze balls to develop muscles. He learned to type and he taught himself to use the DVORAK keyboard layout which he says is easier on his hands.

We had to have referrals to see specialists. When I was able to get them and it was hard, we were sent to "in network" specialists who didn't notice any of the signs of connective tissue disorder. I even gave a list of my son's symptoms to an in-network neurologist a few years ago. That list contained plenty of red flags for a CTD, including scoliosis. He noticed my son's hands but said they reminded him of his chiari patients and sent my son to have an MRI. My son doesn't technically have a chiari but he said it was close and he believed that to be the cause of my son's mild hypotonia and fine motor issues and migraines. Another neurologist, a non-network doctor, disagreed. She immediately saw the signs of a CTD.

With our insurance, we could only see non-network doctors after first seeing in-network doctors and dealing with misdiagnosis for years. When my son asked me why so many doctors missed this and why they wouldn't listen to us, I felt like a bad mom because I should have been able to get them to listen. When I found out through genetic testing that I had the same genetic mutation in the FBN1 gene that my son has, I felt even worse. When I learned about genetics I guess I didn't pay any attention to the possibility of "variable expression." I have very few symptoms and those few symptoms are common in the general population. I wondered for years if my son's problems were because of the medication I took for migraines when I was pregnant with him. Now I know it was nothing like that.

Because of the treatment we got from doctors who wouldn't listen, we both developed a bad case of medical anxiety and white coat syndrome and our blood pressure goes up when we have to see medical professionals. This has gotten even worse since the painful scoliosis surgery and recovery. My blood pressure goes up when I think of the years my son had to wear a very painful scoliosis brace that kept him from doing things with other kids--and I could possibly have undiagnosed heart issues that are common with Marfan. I haven't found the courage yet to get tested.

My son has recently been diagnosed with Ehlers Danlos. He is very similar to your son - has many of the same issues, particularly the motor issues. School was becoming a horrible place for him. Without a dx and accommodations, etc., he literally starting having a breakdown (resulted in an anxiety disorder Dx). It is actually such a relief to have the Ehlers Danlos Dx and I feel so much stronger with the school now. I also now undertsand a lot of symptoms that my son has that I never knew were part of the the condition (poor heat regulation (my son is always hot), trouble falling asleep, dental cavities, vision issues, etc).

Now, I have a report from a top genetist telling the school that handwriting accommodations, such as a scribe, computers, extra time, rest, etc. are "medically necessary;" and, no, you will not build his stamina forcing him to write and, no, he will not out-grow it. And, no, he is not fine just because he isn't your worst student at writing in the class. It took a lot of fighting with the school to get my son's accomodation (this board helped and supported me immensely)... Let me tell you how much more solicitous they are now with a top doctor (and lawyer) behind me. And a REAL PHYSICAL condition that the school can not dismiss or argue around. I can shut them down in second now. My son is thriving now.

I pursued testing him for the condition of EDS/connective tissue disorder based primarily on the information I got here - particularly from Lori H. It was recommended that my DS see a connective tissue specialist to me sort of off-handly by a doc I took him to in an attempt to get to the bottom of his hypotonia. But, the doctor recommending didn't seem to think it was a big issue and, like you, I didn't think his hypermobility was severe enough. When I posted about here Lori H told me the story of her son at my son's age. It was eerily similar. I made the appoitnment that day with the connective tissue disorders clinic. (But we had an over two month waiting time). My son has a mild form of it, he has the hypermobile type and I didn't think his hypermobility was all that severe (probably b/c I have it and never thought much of it; and, also, it is not nearly anything close to what you see on the internet). Nonetheless, he has it and it REALLY affects his fingers and wrist and hands. Like your son, his fine motor and motor-visual integration are deplorable. Anyway, it does sound like your son has it. I urge you to pursue testing and looking into it. Do not be dismissed or putt-off as it is not okay or normal for your son to be struggling the way he is. There is help! And you can MAKE the school help and accommodate. Can he click his joints? My son clicks his joints and lately I have found him "banging" (with his fist) certain joints back into place (ankles and knees). I never saw him do that before this month. I just noticed the banging recently and asked him about it - he said his symptoms come and go ...He goes through good periods/phases and less than good. he said he used-to occassionally have to bang his ankles on a chair or desk to get them back into place but his knees just recently started bothering him.

The genetist said DCD/Dyspraxia is very often co-morbid with Ehlers Danlos.

This is where we are now. I spent all last year getting to the bottom of my DS's issues (Btw, my son has the same visual problem as your son and not until I saw the connective tissue doc was I told that vision problem is very much a result of and co-morbid with ehlers danlos) and getting accommodations in school and help. My goal this year is to get the gifted part of him addressed. In our case, the school offers enrichment, pull-out gifted program starting in 2nd grade that I think will be good for my son. Now, I have to get him despite the the impact his ehlers danlos has on his WISC scores (processing speed and coding is deplorably low and pulls down his FSIQ), his vision issue affcts the picture completion/picture concepts subtest which pulled down his PRI but his other tests were all very high and his VCI is a 132. His acheivement tests (both math and reading are now well-above grade level; math allegedly two full grade levels above). So, we'll see.


ETA: the school can not discriminate and keep your son (or mine) out of gifted programs, enrichment, advancement, etc. based on his disability. So, for example, all of my son's accommodations will be provided whether he is doing regular classwork, enrichment work, gifted class/program etc.

Thanks for all the input and sharing your stories! Can someone clarify for me what is meant by vision problems with EDS. Is it a problem with tracking moving objects and covergence/divergence, and depth perception? If I put a pencil in front of his face and move it slowly back and forth he has to put a great deal of effort into moving his eyes, literally can't keep his head from turning, and he screws up his mouth with the great effort of it. If an object is placed in the periphery, he can't find it without difficulty. He also now seems to have a bizarre ability to move his eyes in different directions on purpose, like one of those lizards.

I am currently taking him to OT and PT 1 time per week (privately), but I believe it is only approved through our insurance for 6-12 months. And even with that we still have large co-pays. dealing with insurance and getting him ongoing services is just as difficult as dealing with the school system. The second he meets a certain goal, he is exited. Then regresses.

In terms of the neuropsych, he wrote in the "Diagnostic Impressions" section: Cognigtive Disorder, not otherwise specified (due to history of language delays), Developmental Coordination Disorder, Mild Traumatic Brain Injury, Balanced Translocation, Possible Chiari-I malformation noted on MRI as an incidental finding.

In the past, various specialists (like the physiatrist) have also given him a diagnosis of hypotonia and flat feet and noted that he has joint hypermobility.

His IQ on the verbal section of the WISC IV was only in around the 85 percentile. But he has a history of language delays and speech dysfuction so I'm not sure if that is an accurate picture, or why there would be such a big gap between verbal and non-verbal (about 25 or 30 IQ points--non-verbal was in the 140's even with the block design that he didn't do very well on). I think he hit the ceiling on the other two tests. I believe that his advanced reading does not come from verbal ability, but because of hyperlexia (or something similar), or something like a photographic memory. He started reading a few years ago, but has never been very interested or done it very much. There was one other boy in his K class last year who read at an advanced level, so she had them read books like "The Mouse and the Motorcycle" together or to themselves, and then asked them questions about it. Should be interesting to see how the current teacher deals with reading. I noticed she does not have hard enough books (they only go to Level L on her shelf).


I asked his first grade teacher if he can do math on the computer in the classroom, and she said yes, but launched into a spiel about how even if the class is learning 2+2, DS would probably still enjoy manipulating blocks with the rest of the class to learn these concepts. DS is very laid back and will cheerfully go along with whatever she says, but I feel bad for him having to deal with stuff that is way too simple

I talked to the spec. ed director with the district and he said that obviously DS needs a comprehensive eval and the fact that he is 2e is causing issues. He told me that he can help ensure he gets a proper eval, since I believe the school will do a bogus one without intervention. I think he is kind of at a loss too, though, and so I'm looking for ideas of things I can ask for. I told him I want to wait and hear what the neuro-ophthamologist says on the 18th. The pediatric ophthamologist that I had been taking him to was completely unhelpful, at first telling me that most likely DS's sixth nerve palsy from the accident would never resolve and he would always have crossed eyes or loss of periphery vision, and then when he did improve after a few monnhs, she said his eyes were "perfect". She dismissed what I told her about the OT and PT's findings about his eye tracking.

blackcat, have you tried connecting with a parent advocate? There are groups in (I think) all 50 states that are funded by the Federal Govt (I think you're in the US - if not, ignore this bit of advice!). I found our local group by going to www.wrightslaw and following the link to "Yellow Pages". You can scroll down to your state, where you'll find contact info for advocacy services. The parent advocate groups provide advice for parents advocating for accommodations and IEPs etc, and I relied on them quite a bit when we were initially advocating for accommodations and an IEP for our ds (DCD + expressive language disorder) as well as when we've had issues with our dd who has medical issues that require an IHP and is entitled to accommodations under Section 504. I've never needed more than some brief time on the phone consulting as different issues arise, but the advice is what made *all* the difference in helping me be successful. The advocates were familiar with local schools and local school staff, so they were able to alert me to the types of issues I would run into; they are familiar with state law and school district policy so they were able to give me the language to use to cut through the school's attempts to try to persuade me that my ds was "fine" and "needed nothing". If you haven't looked for an advocate in your area, it's definitely worth at least the few minutes to check and see if you have a group you can work with, especially given the info you've posted here about the challenges you're having with your school.

I would also continue advocating etc with school even though you're pursuing further medical diagnoses - you have enough info now with the neuropsych report citing TBI as well as DCD that you should be able to get accommodations built into your ds' IEP or get a 504 plan in place for handwriting etc.

polarbear

I spoke to a lady with a group called PACER, but all she really did was tell me they should be doing a comprehensive eval, and she sent me a template that I can modify to request one, detailing my concerns.
His PT told me to try another group called ARC.
We're in MN if anyone has any other ideas. I've been to wrightslaw but need to go back and investigate it more.

Blackcat my hypermobility is "not that bad" either, certainly nothin like the photos on the Internet. But I have had life long issues, many of which could ave been better handled, and made some major life choices that maybe should have been different with full health information in mind. No-one thinks of connective tissues, t gets dismissed out of hand most of the time when you ask, but you really need to know, from someone that actually gets connective tissue disorders, if your son has one at play.

And keep in mind that the most common form of EDS does not actually have an identified gene yet, so is diagnosed clinically not on gene test.

Yes, this. Strabismus is common in people with EDS. My son has intermittent convergent strabismus and he has these exact symptoms. He has a great deal of trouble tracking. He's gotten much better with VT and OT but is still pretty resistant to heavily based vision tasks (particularly those involving scanning and tracking) - depending on how tired he is. Obviously, people also have this and do not have EDS but it is common in persons with EDS because the condition is affecting the tissues and muscles in the eyes (my understanding).

I just read through your posts again and I'm sorry for some of the issues you've been through. Lori, that sounds so frustrating. I have had the term "splinter skills" thrown at me too when questioning things, for instance even at age 4 DS was quite adept at video games on the Wii like Mario Kart--it involves a ton of coordination so how can he have developmental coordination disorder? Now I wonder if it's because games like that involve a lot of visual-motor integration skills, which he tests fine with, so maybe he is using his great visual memory to memorize all the courses and sort of compensates for the poor motor skills. I really have no idea. I just know that feeling of thinking "wait, this doesn't seem right and the pieces don't fit together." But everyone just blows it of.

What would be the best doc to check for a connective tissue disorder? Geneticist?

I had a really good experience going to a geneticist. In reading on the EDNF message board, it seems like people can have trouble with other specialties like a rheumatologist or general practice doctor.

Where some specialist are very good at disorders involving their system of expertise, I think the understanding of how various genetic disorders manifest across the body help geneticists figure out what is going on.

For example I had no idea so many of my peculiarities were related. Things like preterm deliveries, hypotension, missing molars, hypermobility and various other things were related to EDS.