Monday, February 10, 2020

Tyler Update

Some months ago Tyler's Neurologist informed us that he would no longer be able to keep Tyler as a patient.  This did not really come as a surprise to us since the doctor was a pediatric doctor and was not supposed to keep him once he became an adult.  Dr. G had had Tyler for about 15 years when he was supposed to give him up, but because we had all grown so close, he wanted to keep Tyler until he was forced by his group to do so.  We were saddened by the news, but we had an additional 5 years with him that we shouldn't really have had.  We moved on to a doctor closer to home, and one that works well with Tyler's psychiatrist.  

Here is where it gets tricky...I'm glad now that it happened.  Dr. G was an amazing friend and advocate for Tyler, so there is certainly no reason to regret a moment of that relationship.  BUT, his new doctor has a different approach to medications which may be key in moving Tyler in a better position for the long run.  As soon as we started to see the new doctor, he wanted to get Tyler off of Dilantin.  Tyler has been on Dilantin to repress seizures for nearly a quarter century.  Unfortunately, Dilantin is known to have long-term side effects that we believe we are seeing over the last couple of years.  We feel that this was the time to take a calculated risk and see if we can bring him down off of it.

Comfort level is a funny thing in our special needs world.  On one hand, it provides a lot of what a special family needs.  There are tons of benefits to a doctor knowing your child over a long period of time, and taking a personal interest in their care is a rare and wonderful thing.  But there have been times where it allowed us to be content and more hesitant to try to make changes, and that has significant downside too.  I think I was guilty of this when looking back.  

When Dr. G told us we had to part ways, things were pretty upside-down anyway.  Tyler was struggling with behaviors, I was struggling with the psychiatrist's office, and things in generally had gone to crap.  It turned out to be the perfect time to decide to shake things up.  Now we are trying a bit of a new path.  Its not to suggest that the old path was wrong, its just a different methodology.

As for Tyler, he is nearly off of the Dilantin and so far (knocking on wood) he hasn't showed any ill effects.  We decided to ween him down VERY slowly, and to do tests before, during, and after the change to make sure his body didn't suddenly want to jump back into the seizures again.  Its still a risk, even though we have taken as much consideration as we can.  We saw him yesterday and the smiles were there and he looked healthy.

Please take heed from the lesson I am learning through this, getting into a comfort zone is GREAT, but make sure there are still other influences pulling you to keep stepping out of it once in a while.  

Be well and God bless.    Tom

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