Answers and questions and answers and questions.

We had Elijah's appointment with Dr. M today, his new developmental pediatrician. It was a positive visit. Dr. M is an incredibly smart doctor, a compassionate individual and he really truly listened to us as we explained Elijah in-depth. We talked for an hour and a half! Wow! There was no rushing at all, just a totally relaxed visit where we felt our words were valued, heard and completely understood. Perhaps more than they ever have been before by any other human being.

Once he had a good grasp on Elijah, he drew the below diagram. He explained that Tic Disorder (or Tourette's), ADD and OCD/anxiety, when combined, can mimic autism (the shaded area). This is EXACTLY what Elijah's neurologist recently said to us, almost word for word. Super interesting. So again, Elijah doesn't fall into any one category. He has tendencies toward about every single category, though!

And this doesn't really help him at all in school. He is currently receiving special education services under the Deaf and Hard of Hearing label, which is great and necessary. But the central focus is not directed toward what he really needs help with--social skills, attention and anxiety. It's a tricky situation. There are many pieces to this puzzle and there is no ONE answer, as we have known for so long. For whatever "reason," Elijah has bits and pieces of all of the following: Tic Disorder, anxiety, OCD, ADD or ADHD and autism. That's not to mention his hearing challenges and the frustrations that must go along with that. And then there is the sleeping difficulties, which magnify all of the above and which also may or may not be a result or any or all of the above!

Notice part of the word I jotted in the corner of this diagram. I wrote "diminished" because that is a word Dr. M used to describe our situation with E's schooling. When Elijah is not understood by his educators, his whole medical history and everything he has been through becomes diminished. That is exactly how I've felt this year and I've been unable to verbalize that. There are expectations of him that are very black and white, and he just is not black and white and cannot be treated as such.

Another note I wrote down from the visit was Periventricular Leukomalacia, or PVL. Dr. M explained to us that sometimes children born with congenital heart defects also are born with PVL, which is basically a brain injury that affects motor control and other developmental delays. It's a little bit difficult for me to read about it, although it would explain a lot. I can't believe I have never heard this until now. If Elijah does have PVL, it means that damage to some pathways in his brain was done at birth, or even before, due to either lack of oxygen or bad circulation. This is something we will explore.

What do we do now? Dr. M feels that we need to address some important things at school. I personally feel like we just need to get through the rest of first grade and move on from there. It might be a good idea to get him into a social skills group somewhere to work on the anxiety he deals with with his peers. Also, Dr. M feels we need to do deeper psychological testing. Possibly at school, but definitely with a neuropsychologist. I called the neuro-psych and of course they need loads of paperwork, both from us and school, before they can schedule an appointment, which won't be until at least May. More waiting. I feel slightly impatient, but mostly like we continue to figure more and more out about Elijah. I must sound like a broken record, but we are getting there. And Dr. M did have a few medication recommendations that he thought would be a good fit. He obviously wants to run them by E's sleep specialist/cardiologist first. These meds would hopefully get to the root of E's issues instead of just causing him to feel sleepy, if that makes sense. Let's take care of the anxiety and OCD and maybe then he will be able to sleep better. We obviously don't want him on meds long-term, but getting him through first grade without any further major drama is a big goal.

I was super impressed with Dr. M. He knew every detail about everything that we as Elijah's parents are feeling and dealing with. He was able to fully understand what a complicated "case" E is. There is no way to explain how good it feels to feel completely understood like that. And not just that, but to be given huge unspoken high-fives about what a good job ALL of us have done to get to this point, despite the challenges and struggles and frustrations. Elijah's list of AMAZING doctors continues to grow! He has the best people caring for him and I mean that with my whole heart. We are very blessed and thankful!

That's all for now, ha! If you made it through this entire post, you get an extra pat on the back. :) Thanks for reading! Praying you all have a great rest of your week.

Tendencies

Have I ever mentioned how much we love Elijah's doctors? He has the BEST people looking out for him, and his neurologist is no exception. He is WONDERFUL! His easy manner calmed me instantly at this morning's appointment, even before he said a single word. We chatted about our recent concerns, E's tics and recent onset of eye twiching/fluttering. He reviewed the EEG results from last week and even showed them (along with portions of the video that was taken during the test) to Dan and me and explained everything to us really well.

They couldn't have gathered better information from the EEG. During the period where they flashed lights in E's eyes, he had no unusual brain activity. Then a minute later, when there were no lights present, his eyes fluttered and there was still no seizure-like activity. Then later, as he was drifting off to sleep, there was a brief snippet of seizure-like activity and no eye fluttering. From all of that, we can conclude that the eye fluttering that happens when he looks at lights (outside of the test) is not seizure activity. The seizure-like activity they detected during the test was not a full-blown seizure, but indicates that he could have seizure "tendencies." There we go with the word "tendencies" again. How many times have we heard that word when people describe Elijah?! That could be normal or it could mean that at some point Elijah might possibly develop seizures. He made it sound like it was nothing to worry about now, but that we should let him know if it ever gets to the full-blown point.

Tomorrow we will go back to the clinic to get Elijah hooked up to an ambulatory EEG that will monitor brain activity for 24 hours. Dr. J wants to rule out full-blown seizures first and foremost. Seizures can disturb sleep, so with Elijah's sleep issues it will be interesting to see what his brain activity is like while he is sleeping...and waking up in those early morning hours.

Dr. J believes that Elijah has a tic disorder and that the eye movements, along with the rest of his body movements, are part of that disorder. Assuming we rule out seizures, there is nothing to do about the tics and there is nothing to worry about. He said when he sees a kid with tics, he knows two things for certain: the child has ADD (or tendencies, ha!) and the child has OCD/anxiety. Uhhh, hello! These are the exact things I've been saying about E all along. As he spoke, he just continued to describe our boy, as if he has lived in our home with us for the past seven years. "...these kids tend to be able to focus very well with things they are interested in. They cannot focus at all when there is no interest. Outbursts and an inability to transition out of an enjoyed activity are major issues, as well. Also, extreme stubbornness is common in these children..." Seriously, I felt like maybe a secret camera has been rolling in our home for the past several years. Dr. J told us that he had tics as a kid, too, and that most specialists can say the same thing. Dr. J has had the ADD "tunnel vision" his whole life and that is why he became a specialist. He loves his profession and is able to focus on it well because he loves it. He would not be able to focus on a different job without being medicated.

Dr. J hadn't seen Elijah since he was 2, and was impressed with how far he has come given all of his challenges. He gave Dan and I kudos for doing a great job with him, which felt good. We all know Elijah's the awesome one, though.

Click, click...I feel like we clicked at least a couple puzzle pieces into place today. Next, we will see what tomorrow's EEG tells us. After that, we'll explore more options with the sleep specialist and also explore ADD/OCD/anxiety. We're getting there!