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Understanding PANS

Copy of Understanding PANS

Imagine having a bubbly, precocious child suddenly plagued by tics, compulsions, mood swings, and a loss of skills. Imagine going to various developmental specialists, neurologists, and psychiatrists searching for answers. You may hear diagnoses of OCD, autism, Tourette Syndrome, and even bipolar disorder thrown at you, while your child is put through hours of assessments.

What if all of the symptoms were caused by a strep infection?

PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome, and it effects 1 in 200 children. It occurs when an infection triggers an immune response causing brain inflammation and life-changing psychiatric symptoms. My latest post for Richmond Moms Blog is all about PANS and the important work of the PANS Research and Advocacy Initiative (PRAI) in Virginia. Read all about it here!

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Life Lately

After an insanely busy winter, I am back on the blog wagon… I suppose it’s time for a catch up.

Thing 2 continued his journey down the neurology rabbit hole. Last fall, we sought a second opinion on suspected absence seizures, and proceeded with an EEG, head MRI (revealing a Chiari malformation restricting the flow of cerebral spinal fluid), then a follow-up MRI on his spine to evaluate for any tears or syrinx. The spinal MRI was clear, and the neurosurgeon suggested repeating the scans yearly. Our coinsurance for the spinal MRI was $2,200, so I doubt yearly repeats are financially feasible, unless by some miracle Thing 2 qualifies for Medicaid. So far our county Department of Social Services has refused to screen Thing 2 for waiver services. Outright refused, which I am pretty sure is illegal. Typical Virginia. Meanwhile, Thing 2 has been pushing on his cheeks and acting like his face is in pain. Our pediatrician noticed his 6-year molars (the first permanent molars we get) were erupting. We gave him Advil, and that seemed to help. At the dentist last week, Thing 2 was amazingly cooperative, and it must have been divine intervention. Our dentist found an abscess in a baby molar, which must be horribly painful. That is why he’s pushing on his cheek, and that tooth will be pulled next week. This is the point I find myself frustrated and furious with autism and the lack of communication that goes with it. Thing 2 was unable to tell us he was in pain, and that is not acceptable. And unfair. Hopefully his mood will improve once that tooth is pulled, because no one in this family is allowed to take a knee! This month Thing 2 also returns to the neurologist and gets registered for Kindergarten.

Thing 1, on the other hand, is doing incredibly well–in school and ABA sessions. Thing 1 is in second grade, and by Christmas mastered Kindergarten and first grade sight words. His behavior therapist is working on generalizing that skill, meaning recognizing and reading those sight words in formats other than a flashcard. I left my school laptop at home one morning and came home during my planning block to pick it up. I walked in on an ABA session, and Thing 1 was reading. READING. I didn’t want to leave. Besides going into a general education second grade classroom for literacy circles, starting in January he was included in general education math, too. I love it when the stars finally align and Thing 1 makes such huge strides… Sometimes it is difficult to see a light at the end of the tunnel, but hard work always pays off. Thing 1 has been working his butt off.

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Thing 3 is mere days away from his second birthday. He was completely delightful and easygoing until he hit 18 months. That’s when he decided to jump start the Terrible Two’s. The kid is so stubborn! He wants to do everything himself, his way, on his own time. He is also not saying a single word, and every time he stands on his toes or walks in some repetitive pattern around the room, I feel a lump my stomach. I had to make the call yet again and ask for an autism evaluation, which will be another two months away. On that note, I am donating our brains to science. We have not seen a geneticist since Thing 1 was diagnosed in 2010, but there must be something behind the way our genes are mixing and mingling to produce potentially three kids on the spectrum. Hopefully by joining the Autism BrainNet, our noggins can help solve the mystery for other families. Besides, it’s not like any of us will need our brains when we’re six feet under.

I’m almost halfway done with the national board certification process. I submitted Component 2–a portfolio showcasing how I teach writing and differentiate instruction. I had to analyze three writing assignments for that component, and it made me grateful to not be a Language Arts teacher. Oy…the writing! I take a test (multiple-choice and short answer) in June, and then I’ll pick up the process again this fall with two more components to submit. I’m also ready to kick this group of seventh graders to the curb. Despite the lethal mix of laziness, immaturity, and psycho parents this year, I still love my job most days…until Pi Day comes around, and I take one in the face.

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It’s all for a good cause.

The house is in shambles since my husband demolished our master bathroom. It will look amazing when finished, but in the meantime, there’s a bathtub and two toilets hanging out in the garage, sawdust scattered, and a shop-vac by my bedside.

There’s a light at the end of the tunnel, right?

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Neurology, Part II

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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.

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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.

brain_anatomy(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.

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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.