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Neurology…

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(Image source: www.henrycalasmd.com)

Another morning spent with a neurologist…another waste of time.

When we saw a sharp spike in Thing 1’s self-injurious behavior (SIB’s) last fall, our pediatrician recommended he be evaluated for seizures. These episodes with Thing 1 were frightening because they started with a zoned-out blank stare, then his eyes dilated and he repetitively hit himself in the shoulders, sides, and head. A couple neurology visits, blood draws, one EEG, and one MRI later, there was no evidence of seizure activity. Around the same time, we consulted with a developmental pediatrician who prescribed a strong probiotic and several other supplements. Low and behold, after getting his gut cleaned up, Thing 1 was a calmer child. There’s a lot of evidence to suggest autism symptoms are exacerbated by gastrointestinal problems, and I believe this was the problem for Thing 1.

With Thing 2’s increasingly erratic behavior and lack of sleep, our pediatrician again sent us for a neurology consult. What is neurology exactly? These doctors deal with nerves and the nervous system, including the brain, spinal cord, and our sensory receptors. Today we saw a different pediatric neurologist (not the doctor who treated Thing 1), one with an added interest in sleep disorders. I woke up thinking, “YES! Today is the day for answers and a plan!”

Not so much…

Within the first 10 minutes, this neurologist was talking in circles. I detailed our background, what led to this appointment, and he appeared confused. Why were we seeing a neurologist and not a developmental pediatrician? Good question, doc. Maybe because there is a 7-month wait list for appointments, and I cannot get our regular pediatrician to pull any strings in that department. So round and round we went. I explained that Thing 2 is generally a high-strung, excitable, easily agitated kid; that he takes power-naps between 10:00 and midnight; and that when he is asleep, he is still constantly moving and fidgeting. This neurologist’s response: “There is not a medicine to help his problem.” Then the doctor drew me a picture of a clock and explained how the circadian rhythm works. Our prescription–keep Thing 2 awake until midnight, power-nap from midnight until 2:00 a.m., and eventually sleep deprive him until he cracks. I felt like a broken record, but I kept saying that sleep was symptomatic of a larger problem for Thing 2, whether that be anxiety, or neurological misfires, or whatever. But he kept drawing me more pictures of clocks. Not that I was begging for drugs, but I couldn’t get anything out of this guy. Complete blood count, metabolic panel, thyroid check…nothing.  An hour later, Thing 2 and I left the office, I looked down at him and asked, “What the hell just happened in there?” Thing 2 answered with, “Doughnut, please.”

Another speciality visit, another $50 copay, and no answers.

I guess we’ll go for the sleep deprivation and see who cracks first: us or him.

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7

What’s Wrong with THAT Kid?

Let’s talk about sleep.

In our case, it would be no sleep.

Thing 1 goes through phases of (thankfully short-lived) poor sleep. Usually he quietly sneaks downstairs, steals the iPad, and falls back to sleep watching Thomas videos on YouTube. On the other hand, Thing 2 (our middle child and second son diagnosed with ASD) has survived on very little sleep for years. He is only 5.

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According to WebMD, “Researchers estimate that between 40% and 80% of children with autism have difficulty sleeping. The biggest sleep problems among these children include: difficulty falling asleep; inconsistent sleep routines; restlessness or poor sleep quality; waking early and waking frequently.” Thing 2 has all those symptoms. The alleged culprits behind poor sleep for autistic children include low tryptophan and melatonin levels, gut problems, sensory disorders, anxiety, mast cell activation, and Lord knows what else.

We describe Thing 2 as an anxious child. Changes to his routine and transitions are tough. He has always exhibited separation anxiety. He grinds his teeth constantly and makes aggressive (loud and long) vocalizations. He is like the Energizer Bunny and keeps going and going and going… We’ve battled poor sleep for a while, and adding melatonin at bedtime was our first intervention. While it made falling asleep peaceful, it never kept him asleep. At some point between 2:00 and 4:00 a.m., Thing 2 could be heard crying in his room or the hallway. We tucked him back in bed and told him to go to sleep. Sometimes that was enough; more often it was not. To protect the sleep of our other children on noisier nights, my husband or myself head back to bed with Thing 2 or let him sleep with us. At least we are kind of sleeping then, with a spastically flopping and whimpering kid by our side.

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Thing 2 slept through the night a couple times this winter. Then we had constant night waking through spring and summer until August 1–the last time he slept through the night. He typically sleeps from 10:00 until midnight, then he is awake on/off and may sleep in bursts of 30 minutes to a couple hours. When our alarms buzz and it’s time to get ready for the day, Thing 2 has an epic meltdown because he is too tired to move. Mornings are miserable. Whether it’s lack of sleep or anxiety or something else, I don’t know, but he also no longer enjoys activities that made him happy. Now swimming and playgrounds and so many things lead to meltdowns.

You name it, we tried it. We maintain a bedtime routine, limit screen-time and noise, increased melatonin and switched to an extended release, supplemented l-theanine (for relaxation) and 5-HTP (to boost serotonin levels). Nothing made a difference. At his 5-year check-up this summer, I explained how sleep went from bad to worse and asked that Thing 2 be evaluated for ADHD or a sleep disorder or an anxiety disorder or all of the above. None of those would/could be done by our regular pediatrician, so she recommended we see the psychologist who performed the autism assessment. In the meantime, we gave clonidine a try. I hoped clonidine would be the answer to our prayers for more peaceful nights because many friends recommended it, saying it improved ADHD symptoms and sleep for their autistic children. The choice to medicate is difficult, even when it comes to supplements. I worry about the long-term or side effects of medications, but at some point it has to be an option on the table.

I called our psychologist’s office and was told she only does autism assessments, not ADHD or anxiety. I reached out to Thing 2’s teacher and BCBA for suggestions and got articles about sleep studies. I called a local special needs pediatrician and was told she was booked through March and there is a WAIT LIST for April appointments.

It’s September. And clonidine only made things worse.

At the end of my rope, I called our pediatrician and left a message that clonidine was ineffective, did we have other options, and could she pull any strings with that ridiculous wait list for the developmental pediatrician. The voicemail I got back: “This is as far as we go as pediatricians.”

That was the precise moment I snapped, and it was ugly. The floodgates that are my tear ducts opened, I called the office back and demanded to speak to our doctor because her message was unacceptable. I explained to her that we are in crisis mode, that Thing 2’s erratic behavior affects all parts of his day, and I am becoming the parent I never wanted to be: cranky, mean, yelling, impatient, and exhausted.

She’s getting us an appointment with a neurologist as soon as possible. For Thing 2, not me. But maybe I should also have my head examined.

It’s one thing to deal with autism every day and the ways that neurological disorder manifests itself. I realize it’s a journey with peaks and valleys, and that is fine. What deflates me is the lack of understanding we get from medical professionals. Autism is complex, and our kids are sick–some chronically. Whether they battle gastrointestinal problems, inflammation, seizures, feeding disorders, anxiety…couple that with learning disabilities, speech delays, processing and auditory disorders, and sensory sensitivity. My kids do not have the communication abilities to tell me what hurts, so we need real partnerships with doctors who can flush out these symptoms and bring peace to their little bodies. It’s time for the medical field and insurance companies to stop dismissing and disrespecting our problems as “that’s autism,” as if it’s an educational problem to tackle, and spend the time necessary to HELP our kids live healthy, happy lives. And these wait lists everywhere? Give me a break!

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This kid is tired.  So are his parents.

In other news, I’m breaking up with our pediatrician. And Thing 2 slept last night after a dose of hydroxyzine before bed. Hallelujah!! But me? I woke up every hour thinking, “Why isn’t he awake? What’s wrong? Is he still breathing? What’s happening?” It’s bedtime PTSD.