My hair is moving!

Saturday, April 2, 2011 started like any other day.  SB woke at 5:30 am (Yes, he has always been an early riser.  I do think it will be the death of me!)  He woke his brother at 6:20 am, and they played independently (if not quietly) in SB’s room.  When I drug my butt out of bed at 7, SB seemed happy and energetic as always.  I fixed Eggo waffles with maple syrup and bananas, which is a favorite breakfast for both of them, and when I told him it was ready around 7:30 am, SB came running quickly.  He dug into his breakfast enthusiastically.

At 7:40 am, he stopped eating and began complaining that his hair was moving.  “Dude, you have a buzz cut,” I said.  “There is not a single hair on your head longer than 1/8 of an inch.  I’m pretty sure none of your hairs are moving.”  But he was clearly agitated, and he kept saying it.  “My hair is moving!  My hair is STILL moving!”  He started to shake his head back and forth and rubbed his hands all over his head while continuing to complain that his hair was moving.  I had never heard him use this expression before, so I tried to figure out what he meant. “Do you think your hair is too long?” I asked.  “Do you think you need a haircut?” He answered both questions with a “yes,” but seemed distracted and was not really paying attention to me or what I was saying.  I assured him that his hair was fine and encouraged him to keep eating.

Around 7:45 am, he seemed to just space out.  He was completely catatonic.  He looked straight ahead, tilted his head slightly to the left, and also leaned his body slightly to the left.  I continued to talk to him, asking him if he was alright, if something hurt, if he felt sick, etc.  At this point he did not answer any of my questions, or even look at me or act like he heard me at all.  No amount of yelling, poking, or prodding had any effect on him.  His eyes were open and he was breathing, but he did not respond to me.  I became worried, because I had never seen him act like this before.  We have certainly seen him briefly space out or lose focus, but in the past we have always been able to get his attention by calling his name.

This lasted for about 5 minutes, and then he finally started to move and shift in his chair.  I decided that he didn’t feel well and was not going to eat any more, so I told him he could get down from the table.  He didn’t budge.  So I lifted him out of his chair, and he immediately fell to the floor, right next to the dining room table.  I asked him if he wanted to move to the couch, but he didn’t answer.  So I asked again more firmly, “Do you want to move to the couch?”  He answered, “Yes,” and I realized that this was the first word he had spoken in at least 5 minutes.  He didn’t move on his own, so I picked him up and carried him to the couch.  I asked him a few questions, like “Does your tummy hurt?  Does your mouth hurt?”  (I had a sore throat that day, and wondered if he did, too, but didn’t know how to express it.)  He mumbled something incoherent, and then fell asleep on the couch.

He slept there for an hour.   Like I said, SB has always been an early riser and very energetic, and I have not seen him take a morning nap since he was an infant.  I didn’t understand what had just happened, but my husband and I agreed that it was weird.  Thankfully, the doctor’s office where we take the kids has Saturday hours, so we made him an appointment.  The doctor listened to our story, gave SB a thorough check, couldn’t find anything abnormal, and sent him home.  Although I was glad that the doctor couldn’t find anything apparently wrong, my husband and I both felt uneasy.

About an hour later, I got an unexpected phone call at the house.  It was the doctor, and he was very apologetic.  He told me that after thinking about SB’s story a little more and discussing it with a colleague, he decided that he had missed something.  He said, “I think that what you saw was a seizure.”

Something immediately clicked in my brain.  “OH!!!!!!!!!  Of course!  That’s what it was!”  I couldn’t believe I hadn’t thought of that.  I had certainly read that seizures are common in children with autism.  There are actually many different kinds of seizures, and what SB experienced is called a Petit Mal Seizure, or sometimes called an Absence Seizure.  He did not experience any of the jerky muscle convulsions of a Grand Mal seizure, which is the kind that most people think of when they hear the word “seizure.”  Although this was not great news, I felt better that at least we knew what had happened that morning.  The next step was a referral to a pediatric neurologist.

At the first appointment, the neurologist listened to my story and confirmed that what I described was almost certainly a seizure.  Some people who have seizures have a distinct feeling or some other warning sign when a seizure is about to happen, and this is called an “aura.”  This is probably what SB was feeling when he said that his hair was moving. The doctor did a number of small, easy tests on SB, such as having him squeeze the doctor’s hands, move his arms up and down in a certain way, and jump on one foot.  These kinds of tests are sometimes called a “soft exam.”  Thankfully, he didn’t find anything worrisome.  The funniest test was when he asked SB to remove his shoes, which he did obediently.  Then, the doctor opened the door to the examining room, tossed the shoes into the hall and said, “Now go get them!”  Poor SB looked at me with a surprised look on his face, as if to say, “Hey!  That was mean!”  But then he did as he was told.  The doctor explained to me that he was watching SB pick up his shoes, checking to see if he used one arm or both arms to pick them up, and if he favored one side of his body over the other.  Thankfully, SB got his shoes back and passed the test.

The doctor decided he wanted SB to come back another day to have an EEG, which is short for electroencephalogram.  This is a test that records the electrical activity of the brain.  He told me that this would require SB to sit still for about 45 minutes while 25 small electrodes attached to wires were glued to his head, and then sit still for another 30 minutes during the test.  I’m pretty sure I laughed out loud, and possibly even snorted!  I assured the doctor that there was absolutely no way this child was going to sit still for 30 whole minutes, but he just chuckled and told me that as a pediatric neurologist, he rarely got perfect data, and that he would be able to analyze whatever data he got.

SB did surprisingly well that day.  He did not panic too badly while the wires were being glued to his head, and although not perfect, he did sit still for large chunks of time.  (Thank God for the portable DVD player!)  Unfortunately, the doctor found some abnormal readings on the EEG.  He told me that the patterns he saw meant that SB would almost definitely have more seizures.  Not what a parent wants to hear.  He also suggested that we do an MRI scan to rule out a brain tumor.  MRI stands for “magnetic resonance imaging,” and it is a test that uses powerful magnets and radio waves to create pictures of the body. Since an MRI does require a person to be perfectly still for 30 minutes, this meant that SB had to be sedated.

This was some SERIOUS sedation, and a long and painful day.  We had to get up and arrive at the hospital ridiculously early (even for SB.)  I explained to him several times that he was going to get some medicine that would make him fall asleep.  They put an IV in his arm (which was a VERY traumatic event in itself), and then hooked him up to the medicine.  He moaned, “But I don’t want to go to….”  And then instantly, he was out cold.  For over 3 hours.  The actual MRI was easy, because he was so drugged.  He didn’t move a muscle.  Waking up from the sedation was another story.  The nurses shook and shook him until he woke, and then asked him to eat some crackers and juice.  He ate a little, then vomited a lot.  Thankfully, I had brought a change of clothes.  They gave him some anti-nausea medicine, and he went back to sleep for another hour.  They woke him again, and again he ate a little, then vomited a lot.  Thankfully, I had brought a change of…oh wait, we already used those.  So the nurses gave him some hospital pajamas to wear.  At this point, it was getting close to 4:30 pm.  We had been at the hospital since some ungodly hour of the morning, and we were the last ones in the sedation center.  The nurse told me that they couldn’t give him any more of the anti-nausea medicine, that the nausea would definitely be gone by bedtime, and then sent us on our way, pushing my still-sleepy boy to the car in a wheelchair.  As soon as the nurse left us in the parking garage, he vomited again.  Two more times in the car.  Oh, and do you remember what time I said it was?  That’s right – WDC rush hour!  It took us over 90 minutes to get home that day due to a car accident on the beltway.  I was glad that he was still so groggy that he just slept soundly and didn’t seem to mind all the vomit.  I felt terrible, but with no clothes or even towels, what could I do?  (Aside from roll the window down, of course.)

Turns out he continued to vomit the entire next day.  I took him back to the doctor, but they couldn’t do anything except wait for the sedation medicine to work its way out of his system.  I knew he was finally feeling better around dinnertime when he asked me if he could have 4 bananas!  I hope we never have to sedate him again, because that was quite an ordeal.  I saved the paper that listed the name of the medication they gave him and how much, so that if we ever need to sedate him again, I can say, “This is what he had last time, and it was WAY too much!”  It’s amazing to me that even 10 months later, SB clearly remembers having the seizure.  He has an extraordinary memory when it comes to dates, and if you ask him, “What day was your hair moving?” he will say, “April 2” with no hesitation. 

Thankfully, the MRI showed no abnormalities.  This was great news, but where did it leave us?  The doctor was still certain from what he saw on the EEG that we will see more seizures in the future, and suggested that we put him on anti-seizure meds.  Charlie and I discussed this, and decided against it.  We decided that dealing with the side effects of medications was just not worth it when SB has only had one seizure.  If he has more, we will consider it.  But for now, we’ll just watch and wait.

One thought on “My hair is moving!

  1. I remember your sharing that whole ordeal when it happened and what a relief it was to get a clean MRI. Your boy is lucky to have parents who are smart, engaged, and utterly devoted to him and his sweet brother.

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