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Changing Behaviors & Sleepless Nights
Recently my son came down with an unknown illness. Literally the day after our foundation's launch. Jack also quit sleeping.
Additionally, he'd become severely agitated / borderline aggressive and began running to the bathroom repeatedly, trying to pee, but nothing was happening - over and over. Finally, and more puzzlingly, he was debilitatingly obsessive & compulsive over a slew of things we'd never seen before.
Usually a happy-go-lucky little guy, Jack likes playing with cars and trucks, watching Cory Carson on Netflix, the Cars movies on Disney+, riding his scooter, playing puzzles, etc. But, he'd changed on us, literally overnight.
As he started getting sick, Jack ran a high fever of around 102 to 103; we noticed he was having issues swallowing. It also looked like he was getting pink eye, eventually leading to an infection on his cheek.
We gave him leftover antibiotics from one of our other kids, don't do this, btw… just being honest here; we won't be doing this again. My wife is a nurse, and typically that does the trick, but it didn't this time.
We took him to the doctor; his throat was covered in white marks, and they suspected strep, but the testing was inconclusive due to us giving him the leftover amoxicillin. That Thursday night, March 2, 2023, Jack had his first night without sleep. He rampaged through the house, wrecking everything on site. He ran to the bathroom repeatedly. He was attached to his mom. He couldn't keep his clothes on and acted like his body was on fire. We did what we could to calm him, but nothing worked.
The following morning he rested for around 2 hours; we were back at it in the afternoon. We called the doctors, who advised us to bring him in again. After seeing him, they told us to take him to the emergency room.
Due to his overnight behavioral changes, we were advised to get everyone involved, toxicology, neurology, etc., to look at this from all angles. Taking this comprehensive approach because he's never acted like this before, and the meds he'd just been prescribed were not quelling what we would think were the causes of these behaviors.
Heading to the Hospital
We got ready, packed our bags, and drove to UPMC Children's Hospital Pittsburgh. On check-in, we were told we'd have to wait 6-8 hours to be seen, and we could either remain in the lobby or in our car - either being an option with Jack as sick as he was.
We called our local Allegheny General Hospital magnet to see if they take pediatric patients, and luckily they did, and we were seen within 10 minutes of arrival…
The doc at AGH prescribed eye drops, cream for his cheek infection, and more antibiotics. He'd advised that there's nothing more they care to do at that facility. We took Jack home, but after several more hours of off-the-wall behavior, and what looked to be another night without sleep, we decided at 4am to take him back to UPMC Childrens.
On arrival, we'd talked with them about the situation and that we'd been there at 11pm the night before. They'd said they would expedite us getting in, within 2 hours, and to wait in the car. 5 hours later, we were finally admitted.
While in the emergency room, Jack couldn't sit still. The doctors didn't know what was going on. They gave him Zyprexa twice, oxycodone, and clonidine to settle him down, with nothing working. I had to hold/restrain Jack for over 6 hours so they could administer IV antibiotics. He pulled one out, but the second took.
Additionally, we had a CT scan of his eye to look at the infection and an ultrasound of his pelvis to check for kidney stones - nothing showing anything that would be causing these behaviors.
On looking at his white blood cell counts, though, and a few other markers for inflammation - all were sky-high. It was advised that this was due to Jack's bruising from hitting himself and being restrained to keep his IV in.
We were finally admitted to the hospital after a whole night in the ER and not making much headway.
Delirium - the first diagnosis
On admission to the hospital, Jack underwent more tests… a lumbar puncture (spinal tap) to test for meningitis, an MRI, additional blood tests, etc. All were coming up empty except for those inflammatory markers.
We stayed in the hospital for the remainder of the week, leaving on Thursday. While there, they gave Jack a fully enclosed Posey Bed - almost like a netted cage to keep a wild animal in, because we couldn't calm him down. Throughout Jack's hospital stay, he slept around an hour a night. In addition to not sleeping, he wasn't eating or drinking either, and because he wasn't sleeping, he was burning calories nonstop. He'd only take fluids or foods through syringes, like feeding a small animal or bird.
After not finding anything wrong per their specs, the hospital diagnosed Jack with delirium (without rheumatology being involved) - there was nothing more they could do. We'd asked about PANS but were advised this wasn't the case.
We were to take him home - even though he'd made no progress there. Per the American Journal of Psychiatry, "Features of delirium that are particularly prominent in the pediatric population include irritability, affective lability, agitation, sleep-wake disturbance, and fluctuations of symptoms."
On doing our own research, Jack hit all of the marks for PANS: according to the Pans Physicians Network, "PANS ("Pediatric Acute-onset Neuropsychiatric Syndrome") is a clinically defined disorder characterized by the sudden onset of obsessive-compulsive symptoms (OCD) or eating restrictions, concomitant with acute behavioral deterioration in at least two designated domains. Comorbid PANS symptoms may include: anxiety, sensory amplification or motor abnormalities, behavioral regression, deterioration in school performance, mood disorder, urinary symptoms and/or sleep disturbances."
Our thoughts on PANS were also derived from Jack's inflammatory markers, which are also associated with this disorder.
PANS <> Autoimmune Encephalitis
On coming home, for the first 2 days back, Jack averaged around 2 hours of sleep. We continued giving him liquids and food via syringe, but on day 3, Jack was back at it - getting worse than before. He was going over a week without real sleep, but he was now completely inconsolable.
We called our functional doctor, pediatrician, the Cleveland Clinic (they have a PANS unit), and various other doctors specializing in PANS. Jack had lost 20% of his body weight in just over a week and was degrading. He couldn't calm himself to rest; this restricted his body from healing, we couldn't syringe enough nutrients in him to keep his weight up, and there wasn't anything we'd found that could sedate him up to this point to calm him to reset.
Fortunately, a renowned rheumatologist agreed to see us given the circumstances. He treats many kids with PANS - but we were advised that not all healthcare facilities recognize this as an illness, so we call it autoimmune encephalitis for insurance purposes and as the more broad disorder.
Per the OHSU Brain Institute, "Autoimmune encephalitis is a collection of related conditions in which the body's immune system attacks the brain, causing inflammation. The immune system produces substances called antibodies that mistakenly attack brain cells".
They prescribed what would be expected for PANS at this level - a long stretch of steroids, continued antibiotics, clonidine, and filing for IVIG therapy.
Jack, though, was still not getting better.
The following afternoon we also had a call with Jack's well-known functional doctor Dr. Jerry Kartzinel. He's seen patients with autism and epilepsy for over 30 years, has a handful of books out, etc.
We had a 30 min call and were advised to try medicinal cannabis & use an enema - the cannabis to allow him to rest and the enema to disimpact him - he thought Jack was significantly constipated based on our telehealth consult.
He'd said to use the cannabis for 10 days, disimpact him with an enema/s, and let the steroids and antibiotics do their trick while this calms him down to sleep and rebuild.
Not long after, we'd given Jack his first dose of medicinal cannabis, an enema, and that night, he slept for the first time in over 2 weeks. Additionally, Jack started eating and drinking again - on his own.
Severe Dehydration + Constipation
After 5 these days of rest, we believed everything was getting better. Then out of nowhere, Jack began throwing up, over and over, and he couldn't keep anything down. He'd also not fully gained the weight back he'd lost, and now he was dehydrated.
We did what we could to syringe fluids, soups, etc., but he was getting worse. His face was sinking in, his stomach was bulging, and it felt like we were losing him. Knowing how hard it was to keep an IV in him, we worried that due to how frail he'd become and the hospital's refusal to sedate him to provide therapy, we were losing hope and didn't know what to do.
After 3 days of doing what we could, we returned to the ER. On the side, we'd set up the potential to either head to the Cleveland Clinic or CHOP, considering their PANS clinics, if we couldn't figure this round out.
On our way, I'd called ahead. I explained the situation… I'd advised that we could not wait in our car again. Jack was critically ill… I was stern, to say the least, and we got in within 15 minutes of arrival.
We must have had the D- or F team before this… luckily this round, we had A-level folks working with Jack. We got an IV in him - my wife and I walked with Jack to keep his mind off it. Eventually, they gave us a little wagon, with me pulling and holding his hand while my wife walked in tow, pushing the IV bag. We did this for the next 5 hours until he eventually fell asleep.
The next day, Jack started to regain some composure. He wasn't as sunken in, but his stomach was still enormous… X-rays showed that he was severely constipated. I'm not sure that we entirely took care of that initially… So the docs, nurses, and Shannon got to work on enemas through the day, MiraLax (a whole bottle), and senna tabs - 1 in the morning and 1 at night.
Like a small inverse Mount St. Helens, Jack was letting loose… and feeling better. We were discharged the next day - March 24. We'd spent the past 4 weeks back and forth in the hospital. Aunts, friends, and grandparents have been helping with our 3 girls - thank god for them and for having a supportive network.
We're now 5 days into recovery - Jack lost over 30% of his body weight, he quit vocalizing, eating, and drinking, and we almost lost all services due to him not being able to attend (thanks to River's Therapy & the AAC Institute for being so great with everything) - but he's getting better now, resting, now eating & drinking on his own, and slowly starting to communicate again.
Things to note / what we learned on PANS:
- Ask lots of questions & move fast on assumptions, e.g., thoughts on PANS.
- In the absence of PANS/PANDAS teams, consult rheumatology.
- See a functional doctor. Dr. Jerry has helped us with countless challenges over the years, and Jack is exponentially better because of it.
- Issues cascade quickly in these flare ups - create a list of what works for you once you find it.
We believe this has happened before now that we’re thinking more clearly, albeit not this bad. It’s been years since Jack’s been this sick but we’ve got a game plan if this should ever happen again.
For those that may suspect you’ve had these issues before, or are currently in the state of a flare up, below are a few resources that were critical to us, most specifically the physicians network where we found our rheumatologist.
PANS / PANDA's Resources:
We’ve got projects in gear for SCN2A medicines -> help us by donating here.
For fellow SCN2A families -> help accelerate our understanding of what drugs work best for our kids, and open sourcing our de-identified data by signing up for Ciitizen here.
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Changing Behaviors & Sleepless Nights
Recently my son came down with an unknown illness. Literally the day after our foundation's launch. Jack also quit sleeping.
Additionally, he'd become severely agitated / borderline aggressive and began running to the bathroom repeatedly, trying to pee, but nothing was happening - over and over. Finally, and more puzzlingly, he was debilitatingly obsessive & compulsive over a slew of things we'd never seen before.
Usually a happy-go-lucky little guy, Jack likes playing with cars and trucks, watching Cory Carson on Netflix, the Cars movies on Disney+, riding his scooter, playing puzzles, etc. But, he'd changed on us, literally overnight.
As he started getting sick, Jack ran a high fever of around 102 to 103; we noticed he was having issues swallowing. It also looked like he was getting pink eye, eventually leading to an infection on his cheek.
We gave him leftover antibiotics from one of our other kids, don't do this, btw… just being honest here; we won't be doing this again. My wife is a nurse, and typically that does the trick, but it didn't this time.
We took him to the doctor; his throat was covered in white marks, and they suspected strep, but the testing was inconclusive due to us giving him the leftover amoxicillin. That Thursday night, March 2, 2023, Jack had his first night without sleep. He rampaged through the house, wrecking everything on site. He ran to the bathroom repeatedly. He was attached to his mom. He couldn't keep his clothes on and acted like his body was on fire. We did what we could to calm him, but nothing worked.
The following morning he rested for around 2 hours; we were back at it in the afternoon. We called the doctors, who advised us to bring him in again. After seeing him, they told us to take him to the emergency room.
Due to his overnight behavioral changes, we were advised to get everyone involved, toxicology, neurology, etc., to look at this from all angles. Taking this comprehensive approach because he's never acted like this before, and the meds he'd just been prescribed were not quelling what we would think were the causes of these behaviors.
Heading to the Hospital
We got ready, packed our bags, and drove to UPMC Children's Hospital Pittsburgh. On check-in, we were told we'd have to wait 6-8 hours to be seen, and we could either remain in the lobby or in our car - either being an option with Jack as sick as he was.
We called our local Allegheny General Hospital magnet to see if they take pediatric patients, and luckily they did, and we were seen within 10 minutes of arrival…
The doc at AGH prescribed eye drops, cream for his cheek infection, and more antibiotics. He'd advised that there's nothing more they care to do at that facility. We took Jack home, but after several more hours of off-the-wall behavior, and what looked to be another night without sleep, we decided at 4am to take him back to UPMC Childrens.
On arrival, we'd talked with them about the situation and that we'd been there at 11pm the night before. They'd said they would expedite us getting in, within 2 hours, and to wait in the car. 5 hours later, we were finally admitted.
While in the emergency room, Jack couldn't sit still. The doctors didn't know what was going on. They gave him Zyprexa twice, oxycodone, and clonidine to settle him down, with nothing working. I had to hold/restrain Jack for over 6 hours so they could administer IV antibiotics. He pulled one out, but the second took.
Additionally, we had a CT scan of his eye to look at the infection and an ultrasound of his pelvis to check for kidney stones - nothing showing anything that would be causing these behaviors.
On looking at his white blood cell counts, though, and a few other markers for inflammation - all were sky-high. It was advised that this was due to Jack's bruising from hitting himself and being restrained to keep his IV in.
We were finally admitted to the hospital after a whole night in the ER and not making much headway.
Delirium - the first diagnosis
On admission to the hospital, Jack underwent more tests… a lumbar puncture (spinal tap) to test for meningitis, an MRI, additional blood tests, etc. All were coming up empty except for those inflammatory markers.
We stayed in the hospital for the remainder of the week, leaving on Thursday. While there, they gave Jack a fully enclosed Posey Bed - almost like a netted cage to keep a wild animal in, because we couldn't calm him down. Throughout Jack's hospital stay, he slept around an hour a night. In addition to not sleeping, he wasn't eating or drinking either, and because he wasn't sleeping, he was burning calories nonstop. He'd only take fluids or foods through syringes, like feeding a small animal or bird.
After not finding anything wrong per their specs, the hospital diagnosed Jack with delirium (without rheumatology being involved) - there was nothing more they could do. We'd asked about PANS but were advised this wasn't the case.
We were to take him home - even though he'd made no progress there. Per the American Journal of Psychiatry, "Features of delirium that are particularly prominent in the pediatric population include irritability, affective lability, agitation, sleep-wake disturbance, and fluctuations of symptoms."
On doing our own research, Jack hit all of the marks for PANS: according to the Pans Physicians Network, "PANS ("Pediatric Acute-onset Neuropsychiatric Syndrome") is a clinically defined disorder characterized by the sudden onset of obsessive-compulsive symptoms (OCD) or eating restrictions, concomitant with acute behavioral deterioration in at least two designated domains. Comorbid PANS symptoms may include: anxiety, sensory amplification or motor abnormalities, behavioral regression, deterioration in school performance, mood disorder, urinary symptoms and/or sleep disturbances."
Our thoughts on PANS were also derived from Jack's inflammatory markers, which are also associated with this disorder.
PANS <> Autoimmune Encephalitis
On coming home, for the first 2 days back, Jack averaged around 2 hours of sleep. We continued giving him liquids and food via syringe, but on day 3, Jack was back at it - getting worse than before. He was going over a week without real sleep, but he was now completely inconsolable.
We called our functional doctor, pediatrician, the Cleveland Clinic (they have a PANS unit), and various other doctors specializing in PANS. Jack had lost 20% of his body weight in just over a week and was degrading. He couldn't calm himself to rest; this restricted his body from healing, we couldn't syringe enough nutrients in him to keep his weight up, and there wasn't anything we'd found that could sedate him up to this point to calm him to reset.
Fortunately, a renowned rheumatologist agreed to see us given the circumstances. He treats many kids with PANS - but we were advised that not all healthcare facilities recognize this as an illness, so we call it autoimmune encephalitis for insurance purposes and as the more broad disorder.
Per the OHSU Brain Institute, "Autoimmune encephalitis is a collection of related conditions in which the body's immune system attacks the brain, causing inflammation. The immune system produces substances called antibodies that mistakenly attack brain cells".
They prescribed what would be expected for PANS at this level - a long stretch of steroids, continued antibiotics, clonidine, and filing for IVIG therapy.
Jack, though, was still not getting better.
The following afternoon we also had a call with Jack's well-known functional doctor Dr. Jerry Kartzinel. He's seen patients with autism and epilepsy for over 30 years, has a handful of books out, etc.
We had a 30 min call and were advised to try medicinal cannabis & use an enema - the cannabis to allow him to rest and the enema to disimpact him - he thought Jack was significantly constipated based on our telehealth consult.
He'd said to use the cannabis for 10 days, disimpact him with an enema/s, and let the steroids and antibiotics do their trick while this calms him down to sleep and rebuild.
Not long after, we'd given Jack his first dose of medicinal cannabis, an enema, and that night, he slept for the first time in over 2 weeks. Additionally, Jack started eating and drinking again - on his own.
Severe Dehydration + Constipation
After 5 these days of rest, we believed everything was getting better. Then out of nowhere, Jack began throwing up, over and over, and he couldn't keep anything down. He'd also not fully gained the weight back he'd lost, and now he was dehydrated.
We did what we could to syringe fluids, soups, etc., but he was getting worse. His face was sinking in, his stomach was bulging, and it felt like we were losing him. Knowing how hard it was to keep an IV in him, we worried that due to how frail he'd become and the hospital's refusal to sedate him to provide therapy, we were losing hope and didn't know what to do.
After 3 days of doing what we could, we returned to the ER. On the side, we'd set up the potential to either head to the Cleveland Clinic or CHOP, considering their PANS clinics, if we couldn't figure this round out.
On our way, I'd called ahead. I explained the situation… I'd advised that we could not wait in our car again. Jack was critically ill… I was stern, to say the least, and we got in within 15 minutes of arrival.
We must have had the D- or F team before this… luckily this round, we had A-level folks working with Jack. We got an IV in him - my wife and I walked with Jack to keep his mind off it. Eventually, they gave us a little wagon, with me pulling and holding his hand while my wife walked in tow, pushing the IV bag. We did this for the next 5 hours until he eventually fell asleep.
The next day, Jack started to regain some composure. He wasn't as sunken in, but his stomach was still enormous… X-rays showed that he was severely constipated. I'm not sure that we entirely took care of that initially… So the docs, nurses, and Shannon got to work on enemas through the day, MiraLax (a whole bottle), and senna tabs - 1 in the morning and 1 at night.
Like a small inverse Mount St. Helens, Jack was letting loose… and feeling better. We were discharged the next day - March 24. We'd spent the past 4 weeks back and forth in the hospital. Aunts, friends, and grandparents have been helping with our 3 girls - thank god for them and for having a supportive network.
We're now 5 days into recovery - Jack lost over 30% of his body weight, he quit vocalizing, eating, and drinking, and we almost lost all services due to him not being able to attend (thanks to River's Therapy & the AAC Institute for being so great with everything) - but he's getting better now, resting, now eating & drinking on his own, and slowly starting to communicate again.
Things to note / what we learned on PANS:
- Ask lots of questions & move fast on assumptions, e.g., thoughts on PANS.
- In the absence of PANS/PANDAS teams, consult rheumatology.
- See a functional doctor. Dr. Jerry has helped us with countless challenges over the years, and Jack is exponentially better because of it.
- Issues cascade quickly in these flare ups - create a list of what works for you once you find it.
We believe this has happened before now that we’re thinking more clearly, albeit not this bad. It’s been years since Jack’s been this sick but we’ve got a game plan if this should ever happen again.
For those that may suspect you’ve had these issues before, or are currently in the state of a flare up, below are a few resources that were critical to us, most specifically the physicians network where we found our rheumatologist.
PANS / PANDA's Resources:
We’ve got projects in gear for SCN2A medicines -> help us by donating here.
For fellow SCN2A families -> help accelerate our understanding of what drugs work best for our kids, and open sourcing our de-identified data by signing up for Ciitizen here.
Vlad Magdalin
