Gifted Issues Discussion homepage Forums Twice Exceptional Possible cause of SPD, hypotonia, dysgraphia

When my 12-year-old son and I read about the cerebellum in his human body encyclopedia a few years ago we wondered if there was a connection. The cerebellum receives input from the sensory systems and from other parts of the brain and spinal cord and integrates these inputs to fine tune motor activity. He has mild motor dyspraxia and dysgraphia that improved as he got older, mild hypotonia that affects his endurance and mild sensory issues that don't cause major behavior issues. When he was younger, when it would have done the most good, we could not get OT because we didn't have a diagnosis. At every checkup, we told the pediatrician that he still had problems with mild muscle weakness and endurance and that we wondered if the difficult birth where his heart stopped beating, cord was wrapped around his neck and forceps were used could have caused these problems, but they never suggested getting an MRI until recently.

After recent tests ruled out other possible causes, my son's neurologist thinks all of it can be explained by something that showed up on the MRI. He said my son's cerebellum sits lower than most people's and although it is not technically a chiari, it is close, and he thinks it is close enough to cause my son's symptoms. We are waiting to see a neurosurgeon with experience with chiari to get his opinion. He doesn't think he will need surgery because the symptoms are not progressive, but he said we have to try to get the headaches stopped or the neurosurgeon will be looking at that as another chiari symptom, but he thinks they might just be regular migraines. My son gets migraines every time the barometric pressure changes so sometimes it is 4 or 5 days a week. I get them too and I have had them since I was a young teenager, but I can take Excedrin Migraine which contains aspirin and it helps but kids are not supposed to take aspirin.

I had been praying for answers. A few days before we saw the neurologist to get the results of my son's MRI and other tests, my husband and I turned on the TV and watched a Mystery Diagnosis episode about a woman whose daughter had chiari. Her daughter had frequent disabling headaches. She went to a lot of doctors and had trouble getting answers, but she didn't give up. Her daughter had surgery and is fine now. Chiari did not affect her intelligence.

I know from experience that it is hard to think when you have a migraine. I can't do math when I have a migraine and my son makes more mistakes in math when he has one. We tested ourselves on IXL math when we felt a migraine coming. The results were very different from when we did not have headaches. It affects our timing and accuracy. When I first read about dyspraxia I saw some of the symptoms that I get when I have a migraine.

My son was getting a migraine when he was tested by the neuropsychologist at age 11 during one all-day session. When I questioned the results that were worse than I expected on the performance section and asked if she thought his migraine might have caused problems with accurate testing she said she didn't think having a migraine would make any difference in test results. The testing was done through a university. The tests confirmed the high verbal IQ because his verbal ability is not as affected by the headaches. I have more trouble than he does verbally when I have a migraine.

The fact that my son is doing so well in his writing composition class and on IXL math when he is working around almost daily headaches and back pain and sensory issues, etc. make me wonder even more about IQ, especially performance IQ. Just how is this supposed to affect a person academically? Why would his IQ be lower because he has sensory and motor disabilities when it doesn't seem to affect him that much academically as long as he is given accommodations?

Well, I know from personal experience that a regular headache makes it harder for me to think, problem-solve, follow directions. I look forward to hearing more about this question.

Best Wishes,
Grinity

Very interesting. My understanding is that chairi is frequently misdiagnosed as other conditions. It is really frustrating that it took until age 12 before he got an MRI. It is very typically done in the early years for kids with hypotonia. I hope he's not still seeing the same pediatrician who did such a poor job getting appropriate testing and therapy.

Did they seem at all surprised that while he's technically not got chairi that he would be having such severe symptoms? It seems rather odd that they'd say the headaches may not be related but the hypotonia and SPD would be since headaches are the most classic chairi symptom.

If he's not a candidate for surgery, what do you think you've gained with the diagnosis. What will change for him? Are there areas with less frequent or significant changes in barometric pressure? (I get migraines with barometric pressure shifts as well and I know they are not uncommon for people without chairi).

When my son was about seven and had read about genetics, he wanted to know why he had the differences. He asked me if it was because of a genetic mutation. He was very aware that most of the people in his family were athletic, probably because that is all the family talked about at family dinners at Christmas,Thanksgiving, etc. My husband played football in the army and he could run faster than most people. Physically, my son looked more like his dad than me, tall with long legs, but his legs lacked the strength that his dad had, as well as the coordination. My son wanted to know why and I tried to help him find out why but we get our medical care at a military facility because my husband is retired from the military and that is all we could afford. My son had a new pediatrician every couple of years, but none of them thought his symptoms were severe enough to order an MRI even though I kept asking if it could possibly be mild CP. My son did get to see a developmental pediatrician at age 7 and again they seemed more interested in his giftedness than his physical differences. The educational psychiatrist who tested him at that time said he made a 99.7 on his reading on the WIAT and 99.something on math but he thought my son could have kept going if he didn't have the fatigue issues. He told us that based on those scores he estimated that his IQ would be 140 something but he would have to be tested over more than one session to get an accurate score. We couldn't afford testing and this was all our insurance would pay for so we had to be satisfied with that. An OT also tested him said he could use therapy but our insurance would not pay for it at that time. It did not pay for sensory integration therapy. We were told to get the book the Out of Sync Child Has Fun and that was all the help we got.

Every time he got a new pediatrician we tried again to get referrals and at about age 9 my son saw the developmental pediatrician again and we somehow got approved for six weeks of occupational therapy. The OT did not work with him on handwriting, but had him doing things to improve his proprioceptive and vestibular issues. We got six weeks of OT and a suggestion for him to use a tire swing. My husband put up a tire swing in the yard and my son used our living room as an obstacle course. He used games like Dance, Dance Revolution and Guitar Hero and we noticed that his timing got better when he danced in musical theater. We did the best we could with what we had. When two teachers who knew of his difficulties saw him perform as Mr. Mayor when his group did Seussical the Musical last summer, they noticed that his timing and dancing were so much better. One was a special ed teacher who is the mother of two of my son's gifted friends. She has known him since he was five. He used to spend the night over at her house, so she was more aware of his differences than most people and she could see a big improvement in his abilities. He started singing solos, which is required for lead roles in musical theater. For some reason he thought he couldn't sing very well and wouldn't sing a solo but he loved singing with the chorus and one of the moms in the group heard him sing and convinced him to try and he found he could sing well by himself. This was a big boost to his confidence. I don't think anyone would guess that he has a disability when he is on stage. The director/choreographer does not have him lift the girls like she has the other boys doing, she allows this small accommodation for his disability. He does not look like he has dyspraxia when he is performing. He would not get a lead role if he could not do the job. What most people don't see is that he does not have the endurance other kids have, his feet hurt really bad after about an hour of dancing practice, he gets migraines and misses rehearsals, but because he has a gifted memory, he can compensate for a lot of this.

The last time he got a new pediatrician we asked to see the developmental pediatrician again but the waiting list was about four months long. We were told he should see a neuropsychologist because the wait was only two months, but he would have to be tested all in one day even though we told them the educational psychologist had told us he needed to be tested over more than one session because of fatigue issues. We were told it had to be done all in one all day long session. We took what we could get. My son had not slept well the night before the test and had an upset stomach, we were a few minutes late and he knew his dad didn't like to be late and he had anxiety about the test. When he was seven he did not have any anxiety whatsoever about testing. We had waited for months for the testing and he said he just wanted to get it over with. We didn't tell him it would be all day. When he got his first break he told me he was getting a headache. I could see it in his eyes. I gave him Tylenol not realizing that it didn't help much with this type of headache and he went back for more testing. It was a mistake, but we got confirmation of the high verbal IQ and the dysgraphia on paper so he could get accommodations for the disability if he needs them and I still think he would need accommodations for any kind of fill in the bubble test. My husband and I watched him with a Bamboo Pen and Touch tablet. The weakness in his hands still shows up after about five minutes, yet he still managed to do a lot of writing on a three page test several weeks ago legibly enough that he made a good grade, and even though he was sick with a cold. It is easier to see the cursor wobbling on the screen when he holds the pen than it is to notice his hands shaking. The muscle control problem is still there, but is not noticeable to most people. He says this is why it is hard for him to draw a straight line. It is why he had more trouble coloring in the lines. It has nothing to do with intelligence or his ability to learn, yet teachers think kids like him should be held back to practice coloring and tests require coloring in little bubbles and it just doesn't make much sense to me, but then I am probably not gifted. Maybe I only made straight A's because I could color in the lines.

Maybe his ability to compensate was the reason we couldn't get therapy. I don't know, but I would like to know. I would hate to see another family go through this.

The neurologist is the first doctor that really tried to answer our questions so I had pages of questions typed out for him. He asked me why I couldn't ask some of the other doctors and I told him it was because they didn't have the time or wouldn't take the time to answer our questions and like my son once said would only give us cliche advice and ignore the differences that we kept asking about.

I don't think his headaches are related to this "close to being a chiari thing" because so many people in my family get these headaches and many of them were athletic when they were younger. Nobody in my family has hypotonia. My husband had a large family and none of them has hypotonia and they were all athletic and very intelligent. I did find others on the internet who were close to having a chiari but like my son, only had a few mild symptoms. These people had also ruled out all other possible causes.

I think it bothered my son that some people thought he didn't have a disability and that he was just lazy when he couldn't keep up with other kids physically. He has proof now that there is a difference.

Just curious, have you ever tested your math ability on a timed math test with and without the migraine headaches? I tried it a few times and although I can still do math with a headache, the headaches slow me down and I make more dumb mistakes that I don't make when I am headache free. My sister who also gets the headaches would not try it.

Ruling out progressive disease was one reason I wanted testing done, especially after my son was diagnosed with scoliosis last year. I was worried that there might be other things that we needed to watch for. Luckily the scoliosis was caught in time that he can wear a brace and if it continues to work, he won't have to have surgery for that, but the brace is painful and he has to wear it for several more years.

He learned to read on his own very early and the hypotonia didn't affect his speech at all, but he told me he wondered if the dyspraxia was somehow related to dyslexia because he would sometimes write letters and numbers backwards and he still occasionally does this. Writing a two like a five can cause math errors, so he did a lot of mental math. The more he had to write, the more likely it was he would write something backwards so he got very good at mental math. He writes only as much as he absolutely has to and still get the correct answer.

I definitely have executive function issues when I get a migraine but I learned to compensate for it and I think my son will too, but I would much rather that we find a cure for the headaches. So far the amitriptyline is not preventing the headaches, but is helping him sleep, which in turn allows me the sleep I so badly need. I feel like a different person now that I can get uninterrupted sleep.

I wonder if I would be diagnosed with executive function issues like my son if I were tested when I have a migraine. My executive functioning is very good without a migraine. I was very good at jobs like executive assistant and accountant when allowed to work around my temporary executive function issues. Should problems like this be diagnosed when it is a part time thing?

Thank you. My son and I feel very good about this.

You're a super sleuth and "thinking and a solving work it througher." (mickey). Again I have to compliment how you give 110% to taking care of your boy. Granted you always point out that he gives 110% of himself as well. I'm really glad to hear you might have made a discovery as to the cause of his hidden disability. I don't believe it's "lazynss" in children as much as many old fashioned adults would like to think. I'll ask my sister, who suffers migraines, if she would like to try your experiment.

Assuming he doesn't get surgery are you thinking the main thing that will change is that now he has a label he can use to legitimize for family members or other skeptics why he's having trouble? Or, are you thinking there is some kind of concrete difference that will occur in his level of functioning?

If you need to have his math level tested he's certainly old enough to take the SAT or ACT. The ACT can be taken without writing so all he'd have to do is bubble. If he's really a the point where he can't bubble he should be in physical and occupational therapy.

I just think it is really odd that we'd rule out the major symptom of chiari as being related but then use it as an explanation for what would be a less common set of symptoms.

And, really it is impossible to say that anyone ruled out "all other possible causes" for hypotonia because it is a very vague symptom that could be causes by hundreds of different possible conditions.

One of the things that surprised me was that he could compose a poem when he was getting a migraine and had back pain from the brace and had to lie down. He said he could work on the poem that was due the next day while he was in bed if I acted as his scribe.

Here are a few of the lines he dictated to me: "Sky shades changed from blue to gray as I walked a path of slow decay" which sounds like it is coming from a severely depressed person but he was not depressed, he just hurt and the "as I walked a path of slow decay" expressed exactly what I felt we had been doing lately and I couldn't get that out of my mind. The assignment was to write a poem to match the tone of a piece of art or music. He listened to an anime song about a journey and used that. He only dictated about half of it and the next morning before class he finished writing it and had it typed in time to go to class. I thought it was good, but then I am not a writer. He had typed the lines of the poem so that it made the shape of an arrow pointing East. His teacher gave him a 100 A+. I couldn't get him to write at all for me and this is the first class he had taken that required writing since he was in kindergarten.

Another line he dictated to me was "as I slowly tire like an animal caught on a tangled wire." The teacher commented that she liked that one. He has used a tangled wire metaphor in talking to me when describing the glitch that happens sometimes when he writes and plays piano.

One bad thing about this is that now he thinks he can procrastinate and write well enough to please his teacher even though he waits until the last possible minute.

That's beautiful. Thanks for sharing his journey.