The brain is a mysterious place. So much goes on and there is so much nobody even understands yet.
Based on his speech issues, sleep/wake issues, occasional staring spells, and continued regressions we have decided our best bet would be to see a neurologist to see if there is anything we are missing and can do to help Nolan. We want to treat the root of the issues vs the symptoms of them.
We got the name of a highly reputable, published, covered by insurance neurologist. After getting our referral from our pediatrician, this neurologist hand reviews the referrals. That took 2 weeks. Then, we made an appointment-a 3 month wait. The week before the appointment we got a call saying the doctor had an out of the country family emergency and we needed to reschedule….another 3 month wait. These appointments are would you like this time or this time either. They are we have this day at this time, be there or don’t. We took the earliest offered both times and they were both on Thursdays–the day daddy works 8-8. I was willing to do this on my own, but I do enjoy a second set of ears, some medical background and a hand to hold. Thank goodness, he found a sub for just 2 hours to cover the check in – appointment.
We finally have neurology day! The road to the hospital closed today, but it is only a block from Alex’s work so he knew the way to get in. Daddy got off of work for the appointment. We picked up Daddy and he drove us there. Nolan sat on the chair with me as I doodled with my finger on his hands for sensory while Stella sat on daddy’s lap reading. The wait was short.
At the appointment the nurse took all his meds, asked what our concerns were, and took vitals. The doctor apparently took the time to read all those notes because when he came in he had a good idea of the meds we are on and was able to start to chat about our concerns rather than us reiterating them. He then just watched Nolan and did some very basic observations. He then probed deeper into his language loss/regressions and such. When we mentioned he hit all his milestones until he was 2 and he just stopped growing and then started regressing rather suddenly, an idea popped into Doctor’s head.
He mentioned Landau Kleffner Syndrome (LKS) being a possibility. Though it meets a lot of Nolan’s criteria, it is not an exact match. It would be ideal for this to be what he has as they could help his seizures and then help him possibly talk…and sleep. We also discussed Nolan’s current inability to sleep and he upped one of his meds since he was currently on a very conservative dose.
Our plan/next step is to do an overnight EEG at the hospital. You can only observe LKS with a long period of sleep/overnight and we can’t do that at home. This test will show if he has had past seizures as well as if they see LKS. While he is there, they are also testing his DNA to see if they can find the origin of the Autism (and LKS). We should have an overnight EEG appointment soon, we will share results when we have them.