Follow-Up With The Neurologist

This morning we had our follow-up with Dr. Mower, Raquel's neurologist, to go over all the tests and blood screenings she has taken. As I mentioned previously, the MRI showed no brain abnormalities whatsoever, and it turns out that all of her chromosome blood work came back completely fine as well. I was a little surprised by that because of my history of miscarriages, plus losing a preganancy at 5 1/2 months due to Trisomy 18. I kind of thought things were leaning towards that direction.

Not the case. Turns out that my 24-hour Smurf provided some big results in the EEG department instead. Dr. Mower said that the EEG showed a lot of abnormal brain discharges, especially at night. He then got out his chart and showed us how a typical EEG reading looks, then showed us how Raquel's was different. He said that it appeared that she was having some type of epileptic seizure - reminding us that there are many types and ranges and when you hear the word "seizure", you immediately think of eyes rolling back and uncontrollable jerking of body parts, which is obviously not the case with Raquel. He said that her EEG is consistent with a very rare syndrome called epileptic aphasia, also known as Landau-Kleffner Syndrome, or LKS. Again, Raquel continues to be a difficult piece of work because apparently in most LKS cases (I think), the speech delay is also accompanied by not understanding words, which, again, is not the case with Raquel.

The neurologist is recommending that we put her on a seizure medication for 3-months, and then do another EEG to see if it provides different results. His theory is that these abnormal discharges her brain is setting off is interfering with her speech progression, and that her lack of communicating is a huge frustration factor with her. Once she's able to effectively communicate, growth continues. But that's my take on it. All of this brain stuff is extremely confusing and today is the first day I've even googled epileptic aphasia or LKS.

As many of you may know, I am a huge advocate of holistic medicines and chiropractics and putting her on medication is not something I am taking lightly. Her doctor addressed this rather well, simply stating that as her neurologist, he is required to recommend treatments that have been studied, used with placebo trials, etc., but has also heard of the positive results from the GFCF diets, B-Vitamins, supplements, etc. He really does have a great bedside manner and I like him a lot. His frustration was pretty clear when he apologized for not being able to give us the answers we so badly wanted to hear.

But, I'm looking at this as a positive. The MRI was normal, the blood work was normal, pretty much all severe diseases, illnesses, syndromes, etc. have been ruled out. And that's a really great thing. It's still hard not being able to "know" how or what or where or when something went wrong, but I refuse to beat myself up over it anymore. Some things are just out of your control, and I am fortunate to have such a beautiful, affectionate little girl - and a neurologist who continues to be very optimistic!