Monday, January 22, 2018

Neurologist Update


Today, we had our follow-up appointment with our Pediatric Neurologist. We love Dr. Jones, and it's always fun getting to spend a few minutes with her. We talked about all of the issues that have been going on - especially the day that James nabbed my phone. We talked about how in some ways it seems like we are reverting back to those crazy toddler days before we even knew what was going on with James.

We started off with her letting me know that his MRI looks exactly the same as it did the last time it was done... which is a GOOD thing. Don't get me wrong - I love that result, but I was wondering if these behavioral issues were the result of a change there. That isn't the case - so we're back to the drawing board of finding the balance for James.

She gave us the all-clear on the MRI for 18-24 months -- so we don't have to worry about that again for a good while... which is nice.

We also talked about a test that a friend of mine mentioned -- it's a cheek swab test that brings back a list of what medications work well for the patient and what won't work at all. The website for the test paints it a bit differently - as in the test is a miracle that will magically tell you the exact medications that will work best... sadly, that isn't reality. Dr. Jones explained that it basically brings back the patient's detailed liver reaction to each medication -- which can be helpful, but it doesn't directly point you to specific meds. She did say that one benefit to the test is that it can stay with him for life -- so if anyone ever needs to put him on medications later in life for whatever chronic illness may or may not come... it'll have information on what drugs might work best for him.

I feel good about that given that I can't help guide him on what he might be allergic to - where I can with Tyler to a certain degree. At least as far as my medical background goes - so the only mystery for Tyler would be John's medical background... but even there - we know that John isn't allergic to anything.

After talking through that test - we looked at what tweaks we can make to his medicines - so for the next couple of weeks, we are going to try a new patch that gradually doses his medicine over 9 hours. I don't know how the patch will work, but it's the same medication that he has been on and we've had success with it -- so as long as he will keep the patch on, it might work well. Additionally, we are going to give him one of his other pills a couple hours earlier to see if that'll help slow him down in the witching hour when he just seems to be like a tornado.


Lastly, we talked about how he is doing academically - which is hard for me to answer. I'm of the mindset that they are always behind, but I know that is partially me being hard on myself. I feel like in some areas they are doing well, and others we are a bit behind... but I think overall we are doing as well as we can. Everyone keeps up for the most part - so we will just keep plugging away. I hope everyone is having a great start to their week... and I'm hoping to get back to this blogging thing more often -- since we're 95% over this flu now.