Loud, tense, erratic, anxious, unpredictable. That describes our second child in a nutshell. It’s not that he is a bad kid; he is loving, smart, funny, and playful, too. Over the past year, though, we have struggled with his anxiety and lack of sleep…thinking there is more going on than just his autism.
After our visit to a pediatric neurologist in September, we were advised to sleep deprive Thing 2 until he cracked, and eventually the primitive desire for sleep would take over. That doctor focused solely on sleep patterns and ignored other symptoms I described, such as my son’s strange staring and zoning out, blinking hard as if he’s trying to focus, and clenching his face and jaw. Instead, I got a lecture on circadian rhythm. He told me I did almost everything wrong up to that point, and to stop giving Thing 2 medications or supplements (we tried melatonin, hydroxyzine, 5-HTP, l-theanine, and clonidine at separate times) to make him relaxed and sleepy. And that was that.
To say we felt helpless is an understatement.
The next month, we saw a different pediatric neurologist for a second opinion at the urging of our pediatrician. I described the same symptoms, and this neurologist gave partly the same advice–that we need to see a developmental pediatrician for a comprehensive evaluation. I agreed with that, and he shared our frustration with the exacerbating wait list. It’s a supply and demand problem. Then he completely deviated from the first neurologist. First, he said we gave Thing 2 one-third the amount of an effective melatonin dose based on his weight, so he suggested we use and increase melatonin. Second, this doctor was willing to flush out some symptoms, and he zoned in on staring and blinking behaviors. I wondered if the blinking and clenching I see is stimming (repetitive movements or sounds prevalent in ASD individuals) or an indication of possible seizures. Either way, the neurologist ordered an EEG to get a better idea of what’s happening in Thing 2’s brain.
An EEG is an electroencephalogram Small metal discs and thin wires are attached to different points all over the head, and this painless test records electrical activity of the brain. Through an EEG, doctors can look for abnormal wave patterns that indicate seizures and other problems. And here’s where I learned more about brain anatomy than I ever wanted to know.
(Image source: www.hopkinsmedicine.org)
The occipital lobe is the back part of the brain involved with vision. This area showed abnormal impulses on Thing 2’s EEG. The neurologist suggested that if Thing 2 is having seizures, he is likely seeing bright lights or orbs around objects, which may account of the blinking. Either way, the abnormal EEG warranted full imaging of the brain, specifically an MRI.
It’s standard to put young kids (especially young kids with autism) under general anesthesia for an MRI. I hate anesthesia, and it’s my opinion that it was the environmental trigger that caused my oldest’s autism. He breathed in that sleepy-time gas when he had a myringotomy performed at 16-months and was never the same. We needed to put Thing 2 under general anesthesia for his own myringotomy, then to correct that procedure when one ear tube never fell out, and to remove a nasty mole off his ear lobe. Now faced with putting him under general anesthesia again, I questioned the necessity of all these procedures we subject kids to, but how else can we expect to get answers. And with the neurologist throwing the word epilepsy around, I scheduled the MRI.
An MRI is a magnetic resonance imaging test that uses a magnetic field and pulses of radio wave energy to make pictures of organs and structures inside the body. There were two findings based on Thing 2’s MRI. It confirmed seizure activity in the occipital lobe, and he has a Type I Chiari malformation severe enough to restrict the flow of cerebral spinal fluid. I had two reactions to these findings… First, it’s fascinating to see the images of Thing 2’s brain. We’re all amazing, intricate creatures, and you cannot take that for granted. Second, I was scared shitless at all the terminology and wanted off the neurological crazy train. I’m pretty sure I looked like a deer in the headlights.
So, what’s next? Symptoms of the type of Chiari malformation Thing 2 has include neck pain, unsteady gait and coordination, numbness in the extremities, dizziness, vision problems, speech problems, scoliosis, and sleep apnea. If Thing 2 was having headaches or vision problems, how would he let us know? Is sleep apnea contributing to his overall sleep problems? If the flow of his cerebral spinal fluid is impacted, could that lead to a build-up of fluid and hydrocephalus? Those questions need to be answered by the experts who treat Chiari malformations, so the neurologist referred us to a neurosurgeon. The neurosurgeon may recommend decompression surgery or to monitor the condition for now.
I am so, so grateful we got that neurologist’s second opinion in October.
Christmas is in three days. All I really want for my children in the coming year is good health, happiness, and answers. And maybe a full night’s sleep…that would be nice, too. Thing 2 only wants more doughnuts.
Far Beyond Zebra 