Nolan was struggling with sleep a great deal right around his diagnosis. We started with melatonin that didn’t seem to help much. We then got a sleep med from our pediatrician. It helped him fall asleep but we were still getting up many many times. In that time he was tested (December) and diagnosed (January). We saw regressions but not horrible. It was often a trade–he stopped doing this but started doing this. One thing that stayed–lack of sleep. We finally got a referral and went to a sleep specialist at Children’s Hospital. At that trip, they did an interview and concluded he had insomnia. At that point in time, they prescribed a med that would help him stay asleep. (February). We did that for a while but it was still taking a LONG time for him to get to sleep. It was that point in time we combined the meds.
I am an avid recorder/videotaper of my kids. I have a lot of videos of cute things as well as milestones of the kids. I was recently going through videos of Nolan and realized the videos of him talking and saying cute things, milestone things, dropped off DRAMATICALLY in February of 2017. What happened in February of 2017? Insomnia diagnosis with the second medication introduced.
We have done an EEG and an MRI. They have ruled out seizures or other abnormalities in the brain. We have tried the Nemechek protocol (and continue to work on) to gain language. We have gone gluten free (didn’t make a difference so we discontinued). We have visited just about every avenue to get Nolan talking again and realized the only thing that remains constant is language continues to WORSEN.
With this knowledge, I called Nolan’s Neurologist and asked if his starting the sleep med (which also happened to be the one we increased because of the neuronal instability discovered in his EEG) and loss of language happening at the same time was causation or correlation. I have enough science background to know that just because 2 things happen at the same time (correlation) does not mean one caused the other (causation). He stated he didn’t thing they would have anything to do with each other but if we wanted a taper schedule to test it out to let him know. We sat on this info for quite some time and decided we wanted to take the risk.
We finally made the GUT-WRENCHING decision to cut Nolan’s sleep meds in the hopes to see an increase in language. We called for the taper schedule and he basically said cut one (we can pick), wait a month, cut the other. We decided to cut the one we introduced that fateful February first–the stay asleep med. We cut it a Friday night that Alex had the Saturday off of work. We were up from 12:30am-5:30am with Nolan. Nolan was tired, laid there quiet, but simply couldn’t close his eyes. We then realized it was full moon week (and an eclipse) and he never sleeps through with a full moon even WITH meds. That being said, we decided to taper off his meds slowly this week (buying us full moon week time) but also helping him adjust to the change. That night, with a 1ml decrease, he slept his normal time 8pm-7am. We continue to see him tolerate the decrease in meds. He’s sleeping pretty well with short wake ups. He is absolutely crashing at 8pm though, so we do believe his sleep patterns are different without the meds.
We continue to research ways to help him sleep to buy time while we wait to see if he is gaining language (after giving him enough time to “re-learn” language) and IF we notice an increase in language again we will stay off the meds. That being said, if enough time and speech therapy is given and we do not notice a change in language, we do feel comfortable going back on his sleep meds.
I am not sure if you have seen/heard Nolan lately, but we cannot get him to copy words, say many word, and when he does there are many extra syllables and they aren’t very understandable. We continue to work on speech device and sign language, but we know the language was there and if we can help it come out we are going to try. Here are some videos of where we WERE, where we would at least like to get back to. These are all critical skills for school and we feel if we can get back to this point we can get him better on track for mainstream school (our goal is mainstream school with supports).