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.

Thanks, I will ask the doctor about that as well after my son has his echocardiogram.

I think I need to stay away from my relatives right now. Even my dad said something that I did not need to hear right now. He said the fact that my son has pain after standing for more than 15 minutes will make it hard for him to find a job which sends my worries in a whole new direction when I need to focus on getting through the diagnosis issues and the surgery. I have not talked to anyone else in my family about it. I did tell my dad that he could tell my sister who wanted to diagnose my son with Aspergers because he read at 2 and used to join in with family discussions about the latest things happening in the news because he was homeschooled and learned everything he could online about what was happening, so he knew when she said something that was not correct. He wasn't rude about pointing it out to her, he would just say he had read something different and he thought something different instead of just going along with what she said. I taught him to question things and that it was fine to talk about the news with the family, especially if he had something interesting to add. His ability to talk about these things was better than mine so I didn't think anything was wrong with him talking, especially when he couldn't talk to kids his age about these things, but people here think it is weird if your kid talks like an adult. My son has seen a lot of doctors and not one thought he had Aspergers. I know this had to bother my son, even though he said it didn't. He stopped talking around family because of the way they are. My husband always told him to not worry about what other think.

Lori the echo won't show anything about POTS, which can be even harder to get diagnosed than connective tissue disorders. You may luck out but you may need to research someone local(ish) to you who has a clue, maybe through a support group website. Note: I am not sayin he has it, just that its hard to get assessed by someone with a clue. I passed (failed??) the diagnostic tests with flying colours and there is no doubt I have POTS but I still get random drs doing weird meaningless "tests" and giving me the "that's all in your head honey" look....

Ultramarina, I haven't had any of my kids formally diagnosed, though all of them will probably need to be at some point. But I know what to watch for because I am diagnosed. What is interesting though is that my HG+ girl was described by our OT as having neurological integration in line with her iq (I assume he speaks only of neurological issues as they relate to OT assessment), and that this was the only reason she was not more obviously disabled by her low to e and hypermobility). He was astonished by some of te things she could do, which he felt should not be physically possible for her body. My point being - in some kids there are ways of compensating. My MG girl, as far as I can tell, is actually not as bad wih the low tone and hypermobility but she has integration problems and "looks" worse....

We had/have the same problem... I am sure it's worse where you are but my neighbors were perplexed by my son precocious verbal and conversational skills.

This is us now.... When I saw the recommendation that we follow up with a connective tissue disorder clinic and specialist I looked up the symptoms and I felt like Ds doesn't have many of the symptoms. So I simply dismissed it. The neuromuscular specialist did mention it but didn't seem very concerned. Thanks to you, I know better now and will follow up.

At his last appointment with the orthopedic surgeon, my son told the doctor that he was concerned that anesthesia might not work as well on him as it does most people because he noticed that the anesthesia his dentist uses doesn't work unless she gives him more than the usual amount. The doctor told him they would be using a different kind of anesthesia for spinal fusion surgery.

I knew that my son was trying once again to tell a doctor that he had some differences and needed to know why. He needed to know if there could be problems with other types of anesthesia, but the doctor just seemed to dismiss it as not being relevant. It is hard to keep asking questions when you get this kind of response. I just got through reading that people with a joint mobility syndrome can have problems with local anesthesia and it sometimes takes more than the usual amount to be effective. Doctors should listen to patients because there could be important clues they are missing.

Lori is he having a local or GA?

oooooo, follow up on that... my father had harrowing stories...

It is a six-hour surgery so it will be general anesthesia.

While searching for reasons for my mother's severe complications from surgery that left her with severe brain damage, I read about anesthesia awareness. I also saw people talking about their experiences with this on a tv show recently. I will talk to the anesthesiologist about this before my son as any kind of surgery. This is why the anesthesiologist needs to know about his medical conditions so this can be avoided.

The geneticist thinks my mother's complications had more to do with her sleep apnea and the fact that they did not monitor her oxygen levels closely enough during and after surgery. My dad and sister both said some kind of alarms kept going off but they thought maybe the nurses just assumed there was something wrong with the equipment because they would not do anything. My son doesn't have sleep apnea so we shouldn't have to worry about that. He will not be having the surgery at the hospital my mother went to. We have heard a lot of horror stories about that hospital since that happened to my mother.

My son likes to watch the news and we started seeing an ad looking for people who had problems with spinal fusion surgery to call some law office.

This is so hard.

Lori, my understanding is that the problems with connective tissue disorders and anesthesia relate to local anesthetic. Where as if he also has POTS or cardiac complications that those things cause increased risk/complications with GA. It's purely annecdotal but while locals do almost nothing for me, I have no problems with GA, despite having POTS, which can cause problems.