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My verbally gifted son was diagnosed several years ago with developmental coordination disorder by a neuropsychologist who tested him in one all day session despite the fact that he had fatigue and endurance issues and was getting a migraine. She seemed angry when I questioned the test results and told her that some of it didn't make sense if you look at everything else he has been doing. For instance, I asked how he could have this and not appear to be clumsy when he sang and danced at the same time in musical theater. He was learning dances with half as much dance practice as the other kids because he had to stop and rest when his feet and legs hurt and it took a little longer to develop the motor memory when he was practicing half as much as the other kids. I asked how it was possible to dance and sing at the same time and do improv if there was any kind of motor learning disability. Her answer was that some people have "splinter skills." My son wanted to know how he could have a learning disability if he didn't really have trouble learning anything. It was a bad experience but we did get confirmation of his verbal giftedness and documentation of dysgraphia. His dysgraphia was not obvious until he had been writing for five minutes and his hands started cramping. His fingers were very hypermobile, especially the top joint.

I always thought his bendy fingers made it more difficult for him to write for long periods of time but the OT he saw for six weeks when he was about nine didn't see enough of a problem for her to even work with him on handwriting. Because experts didn't see that much of a problem I, for a very short time, started wondering if he was indeed a little lazy and I thought maybe I needed to make him practice writing more like everyone was telling me and I told him he should try harder. He never forgot the "just try harder." He uses every opportunity to tell me the same thing when I ask for his help in using electronic devices that I lack his natural ability with. Just try harder, mom--but then he goes ahead and helps me. I should have never told him that. I should have trusted my gut feeling that there was a problem and it was the doctors that could not see it.

The OT my son saw for six weeks when he was about nine worked worked with him on vestibular and proprioceptive problems instead of the fine motor issues I felt he needed help with. These problems seemed to be worse on some days than others and I now think it had something to do with the migraines. I know I tend to bump into things when I have a migraine but I don't have the problem when I don't.

As my son got older he became stronger from dance and working out with our weight machines and eliptical at home and musical theater dance but his endurance never really improved. His grip strength is enough that it hurts when he squeezes my hand and his piano teacher noticed that his fingers were so much stronger than when he first started taking lessons at five. He did use squeeze balls to improve his strength and his hands still hurt after five minutes of writing so he types. He can type using either DVORAK (which he taught himself because it is easier on his hands) and QWERTY which is what he originally taught himself. He types between 60 and 80 wpm. His speed drops a little when he starts getting tired but I think 60 is fast enough.

Connective tissue disorders can have some of the same symptoms as developmental coordination disorder. A CTD is what my son really has. This is why he had hypotonia. This is why he didn't have the muscle strength to walk until he was 18 1/2 months old. This is why his eyes got tired easily. This is why his hands hurt after writing for five minutes and why his feet hurt after standing for about 15 minutes. This is probably why his scoliosis brace did not work.

Some connective tissue disorders can cause severe surgery complications and my son needs surgery. Misdiagnosis can have severe consequences. Luckily, people on message boards have shared information about their kids with similar issues and this is why we are finally finding answers. I am a very shy person and I had to learn to keep questioning doctors when there were so many of them that would not listen to us.

I want to thank all of my message board friends. Without this board I would not have known what was normal for our kids. Without it I might not have had the confidence to question doctors who I thought were supposed to have all the answers.

Lori, I have mentioned before how similar our sons seem to be... My son also has hypotonia and most recently dysgraphia. I would definitely call my guy verbally gifted. When I took him to CHOP they said his hypotonia was mild now. His joints, however, are hypermobile - particularly his fingers and, like your son - the top joint. They didn't want to do a bunch of tests or do an MRI on him but one thing they did put in the recommendations was "to follw up with the CHOP connective tissue clinic" "given the finding of increase laxity of joints." I didn't gibve it much thought actually. Of course, now I am. How did they finally diagnose your son? Is it through genetic testing?

Hopefully this diagnosis sticks and can be treated accordingly.

I just had a friend who had CHOP miss a cystic fibrosis diagnosis for several years.

Yikes.

There are some wonderful departments at CHOP, but we have not had good experiences. When DD8 was about a month old, I called dermatology to get an appointment for a rather rapidly growing (benign) vascular tumor. They told me they weren't taking new patients and they had much worse cases than hers. We went elsewhere.

Bottom line, if you think there might be an issue, have another doctor take a look. If you don't like CHOP, try elsewhere.

I don't know the details of your son's case, but DD15 has a friend that has joints that flex too far (not sure what the condition is called). It has resulted in a lot of sports injuries. Better to look into it early on and err on the side of caution.

I am not sure about your case either but as a mom of a kid with multiple medical issues, I would always get a second or third opinion. Major medical centers are good for some things but most have severe flaws. Their doctors are often not trained well. They usually have one or two specialty areas and then the other departments are years behind their peers at other children's hospitals who are leaders in their specific areas.

Lori I am glad you have answers. Have you investigated POTS as well?

Yes I agree with you all. I will follow up with CHOP (because of the referral, I should get an appointment fairly quickly) and then I will get a second opinom maybe at DUpont (or wherever else in the area has a connective tissue clinic). This is concerning. Thanks to Lori for posting and keeping us updated on her son's condition - Lori, you may be helping another child.

Hmm....my DS has hypotonia and hypermobile joints. In particular, his fingers bend back 90 degrees and his elbows and knees do really weird things. They were very worried about him when he was a baby as he was quite delayed in large motor skills, and he was in PT for a while, but caught up nicely by age 1 and was discharged. He saw a neurologist who found nothing; he actually even had a head CT and was tested for muscular dystrophy. I still wonder if we should be following him more aggressively. HIs writing seems okay, but is definitely a weaker skill compared to his others. He fatigues more quickly than other children his age but is quite coordinated and athletic. I wonder if any of you think I should be more assertive? Hypotonia and hypermobile joints do seem to run in the family.

We did see a geneticist and even though my son doesn't have all the typical symptoms of a connective tissue disorder he is definitely on the "connective tissue disorder spectrum" according to the doctor. It will take several weeks to get test results. I wish we could have found out when he was younger. I did look at CTD symptom lists years ago but thought he didn't have enough of them to have this but that was before he got scoliosis which is also a symptom. When he was younger his spine was straight and his hypotonia was mild and he didn't appear to have any kind of disability to most people. It was very much an invisible disability.