Neuro Follow-Up Complete

This morning, we had a rather lengthly follow-up appointment with Dr. Mower. His first comment to me after greeting us was, "You've had a pretty difficult spring." Yes we have. But hopefully that just means we'll have a really great summer. The cup is still half full, remember?

There weren't any tests to review this time so we basically just talked after Raquel's initial exam. We stressed our concerns about these "episodes" going on, and then one happened while we were there. He watched intently and then told me not to be scared by them, that they resemble autistic like behaviors and he doesn't feel they are seizures. Even the staring spell that I thought she was having he said wasn't one because she was blinking and would easily redirect her focus. He said he thought she was just aggitated and reacting to that. She has lost weight so her meds may be off and her levels could now be too high, which could be the cause of this so tomorrow I have to take her back to Children's Hospital before I give her the second dose and have blood work done. Then I'll talk to him on Thursday and see if he wants to make any adjustments medication wise.

He was very happy to hear the positives that we are noticing: improved sleep, less frequent headaches, more vocals, better focus, etc. and doesn't want to change medications at this point.

He does want us to do the 24-hour inpatient video EEG monitoring, so that has been confirmed for August 16th at 9:30am at Children's Hospital. Dr. Mower or one of the other neurologists in his group will be administering the test. Once the test is done, he said we'll know if she has Landau-Kleffner Syndrome (LKS)/Epileptic Aphasia. He also requested that they do blood tests for a couple of very rare metabolic diseases. It sounds like if these tests come back negative and the video EEG shows she doesn't have LKS, then she may be given an Autism diagnosis.

Mike did mention that he's concerned about her having a bad reaction to the Depakote, that both his sister and aunt couldn't tolerate it. Dr. Mower said if the video EEG in August shows the abnormal brain discharges she was having are gone, then other anti-convulsant meds would do the same thing. At that point, if we are still having concerns and feel she is acting overly medicated, we can start trying to find a better fit medication wise. Again, the blood work tomorrow will tell if her levels are too high or not. It could be as simple as that.

I feel a bit relieved knowing that the episodes don't need to freak me out. Having Dr. Mower observe it and then look me straight in the eyes and tell me that I don't need to freak out was a very reassuring thing. He reminded me of all the tests that have been done and how so many things have been ruled out. And he stressed therapy, therapy, therapy. And the more the better. In-home behavior therapy will resume next week. Now I just have to work on getting speech and occupational going again.