2 PANS kids fighting lyme and coinfections, our journey to healing

Sleep Study

After several years of sleepless nights with our son I attended a seminar by the Love and Logic group. At the end of his talk the psychologist who was leading the seminar said “the kids I worry about are the ones that don’t sleep!” which made me sit up. Our son had a really difficult time sleeping, ever since we had first met him at 4 months. At first we attributed it to his strange surroundings, then to respiratory issues from his coughs and colds he always seemed to have. When he finally made it home it became evident he had either sleep nightmares or sleep terrors. Although we ruled out terror episodes as he seemed to be awake when he awoke. He woke up multiple times each night, screaming loudly. Often he was inconsolable. We attributed it then to new surroundings, then more respiratory issues, then to having a new sister in the house, then because we moved.

Eventually we ran out of things to blame it on and had to conclude that he really couldn’t self soothe, we tried every sleeping technique we could read up on, including other parent’s anecdotes, video’s, establishing consistant routines etc. anything that was suggested we tried, all to no avail. When we tried any of the sleep techniques that involved allowing them to cry for even a short period, he would use his remarkable gag reflex to get our attention! At 4 am or 1am it didn’t matter, he could be up screaming, crying, or just wanting to play, sometimes he would wake up and ask for breakfast at 2 am! We eventually got used to a child sleeping in our bed, and to being kicked, punched and slapped during the night, so we knew that wasn’t the answer either.

While he was in a crib it was easier but he learnt to climb out around 15 months and then it was all over. No more containment meant no more keeping him in his room at night. We tried gates but he kicked them down or climbed over them. We tried the gate with a clear plastic window and he STILL managed to climb out. Simply trying to get him to stay in his room became an exhausting exercise in futility.

Before that seminar I had realized it was so much more than just a sleepless child (a child who was quickly making two adults very sleep-deprived) and we started to worry more about this part of the puzzle. We addressed the issue with our pediatrician who arranged an overnight sleep study.  The sleep study took all night in a location down-town, so he and I packed our bags and after he was in his pj’s in bed they came in and put a cap on his head, then they proceeded to cover him with wires. It was hilarious he looked like some weird creature, he of course didn’t find it as amusing as I did but smiled gamely while I took his picture during each part of the process.

Eventually he fell asleep, except for a few times where he pulled an electrode off the sleep part went relatively fine. We got up in the morning and went home. A week later I went back to talk to the doctor. It turned out that our son was suffering from something called Periodic Limb Movement Disorder which involves involuntary movement of the limbs. He was having muscle spasms 15+ times an hour, he would wake briefly and then go back to sleep until the next twitch woke him up. That’s why we had been being kicked and slapped all night long, well at least 15 times an hour anyway.

Her suggestion was a pretty heavy duty medication, which as he was only 3 we were not super keen on him taking. I want to say it was klonipin or clonidine or something of that nature, not exactly sure if that is right, but it was something that sounded a lot like that. After I said the medication wasn’t an option she suggested that other parents had had luck with supplementing an iron product. I came home and Googled iron supplements and so began our relationship with Floradix Iron. It is a plant based iron and I understand it doesn’t have the systemic implications that an iron pill might have. It actually worked for the PLMD within days. He stopped twitching and throwing his arms around and we all started to get better sleep. It does occasionally start up again and so we start his iron supplement and it goes away.

He usually goes to bed around 7.00 pm, after a shower, we read stories and he tends to fall asleep fairly quickly, usually by 8 pm. He usually gets out of bed around 6.30 am but his sleep can be some combination of 10 hours, maybe he sleeps for 3 or 4 hours and wakes up, maybe he manages 5 hours before he wakes up but his sleep is still disrupted. He more often than not goes into our bed around 11 or 12 pm, which we really hope starts to change soon, he is getting bigger and at age 7 we feel he should be at least in his own bed most nights. Some nights he just can’t go to sleep so we will give him a melatonin supplement (only about 1/2 teaspoon, as it seems for melatonin less is more) which helps him drop off, although it doesn’t keep him asleep. We have tried valerian root to keep him asleep in the past on the suggestion of his MD at the time,  but that didn’t seem to have any affect. So right now we just do what we do, one day we hope his sleep pattern will become better.  One can still dream I suppose!

© Loving the Spectrum