Insomnia & Meds

Nolan was diagnosed with Insomnia on Valentine’s day 2017–he was 2.  Insomnia and Autism often go hand in hand.  WebMd has an article on Helping Kids sleep with Autism.  We have tried many things, many, many things.  We tried routine, we tried calm before bed, crazy get your energy out before bed, tech time cut offs, melatonin, lavender, essential oils indicated to help with sleep.  Weighted blanket, scrunchy blanket, relaxing water projector, dark, music/lullabies, white noise, etc. Nada–ok maybe not nada, but not good night sleep. Mattress Advisor shares a lot of these tips in their sleep resources as well.

We tapped out our pediatricians ability to help so he sent us to a sleep clinic.  Only problem?  It is only located at Children’s Hospital–2 hours from home.  We drove down there to meet with the Advanced Practice Nurse.  She talked (yes, just talked-not sure why we couldn’t do this over the phone) with us and agreed he had insomnia.  Through her, we found some medications.

We found a medication that helped him fall asleep great—but it didn’t keep him asleep.  He would be up between 2& 4 ready for the day stimming and jumping around.  Not working for mom and dad’s brain function. 

Then we tried a med that helped him stay asleep but that was taking 2ish hours to get to sleep–He was up longer than we were. (in addition to all the things listed above) We called to get a med check because this was just exhausting (literally). 

They called back, gave us an appointment in a week, 5 days before Christmas, at 2 in the afternoon while he was in school, while Alex was working.  I called back and told them that it did not work out and I do understand they book out in advance so I would be willing to wait for an appointment to reschedule.  Never heard from them. Alex (he is a PharmD, I do not recommend all husbands just doing this) combined the two meds-get to sleep stay to sleep.  It was working like a dream….until we ran out of refills. We called for a refill and they told us they could not get us a refill until they see us.  Well we had enough for 2 days so that wasn’t going to work. Then they scheduled for the day after his adenoid surgery-we called ENT for permission to travel the day after surgery and they said it was ok but sleep clinic said they would rather not.  We went back and forth and finally they gave us an emergency supply for 2 weeks until they can see us.  Then they mentioned they only want him on one med–not both.

While working with the sleep clinic 2 hours away and needing to drive there with him (missing school/therapy), we also began working with our neurologist. Our neurologist agreed to take on his sleep meds and case and we could use him for refills, check ups, and med changes.

Nolan is still on both medications, the “go to sleep” med and the “stay asleep med.” They were working perfectly in sync until recently. Recently, Nolan was also put on a seizure medication and after a very slow taper, we hit the full dose the same week schools closed for Covid-19. At that same time, he stopped sleeping through the night and has resumed his wake ups of 2-4 hours in the middle of the night.

We are not currently sure if the seizure medication is messing with his sleep (it is a side effect) or if it is from the lack of routine and mental stimulation with school and therapy closed. We have increased the dose of his “stay asleep” medication and therapy has resumed for only a couple days and we are still waking up. We are going to give the start of therapy a couple more days and if we still notice no difference, we need to contact our neurologist for another plan. We do have our annual check in in June to help as well.