Tuesday, January 24, 2012

Doctor #3, please come forward

Today was our 2nd Second Opinion. So, our 3rd neurologist to "interview" in 5.5 years. We've had the same neurologist since birth, but wanted to venture out and see if there were some other brain-guys out there that had other opinions…or at least better communication skills. (Don't get me wrong, I actually really LIKE our original neurologist, but we just never felt like we knew exactly what was going on or why he was doing anything. It's actually really sad and hard for me to let go of any doctor that I like…that's a big deal in the world of constant medical care.) So, today was Children's Medical Center (the Plano office) to see what they had to say. I need to take a moment and say that this was the HARDEST office to get into. In fact, dear family friends worked their magic to get us expedited, and it still took (what seemed like) forever. So, we meet with the doctor and he had a totally different approach. (Joe is wonderful and has been taking off work to do all of this with me…pretty sure we are going to burn through all of his vacation the first half of this year just for medical appointments…still a lot to do in the next few months!) As you can see I took all of my notes and reports and labs and more notes (these are just her neurological files…or things that relate to neuro, the girl needs an officeassistant! Luckily, we have JoBeth!) Dr. K lets us tell him the whole history and then reads some reports and gives us his take. He's very well spoken and explains things well. With each doctor we are learning more and more as they each have a different style and way of explaining…actually very helpful. After a lot of discussion on what we've seen and done already, he suggests that we go the route of the Ketogenic Diet, which has been known to slow down or stop the advance of seizures. We've heard about the diet before, but never gone into as much detail as we did today. We will meet with a nutrionist at Children's who specializes in the diet for children, andwill answer all of our concerns and questions. We aren't even sure how it will work for Ella since she has an odd eating pattern and can't chew and consume her food like a typical person. Then we will have a very extensive blood test done (complete with metabolic testing) to make sure that her body is capable and safe to be put through ketosis. It's really hard on a lot of the body and is even started in the hospital for 3-4 days before you can go home on the regimen. Then there are once a week appointments, which then get further apart, but with daily monitoring and testing. This can go on for 2-3 years, or longer, if the treatment works.
So….that's one option. We still have the option from Cook Children's to do the testing and check to see if we are a candidate for epilepsy surgery.

We have decided to check into both routes. We will begin the education and testing for the diet to see if it's something we can even do for her. Then in March (Spring Break), we will check into Cook Children's for a 4-day EEG and PET/MRI scans to see what exactly is going on with her brain when the seizures happen. We feel like doing both is our best way to collect all the information we need to make the best decision. If she qualifies for the diet then we will most likely go that direction first and then follow up with looking into surgery if the diet doesn't seem to be curbing the seizures.

Currently we haven't had a full seizure since last Thursday, 5 days, and we'd like to go back to only expecting 1 every 4-6 weeks. Then we'll have some time to make some good, educated, decisions.

Thank you for all your prayers!!

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