Dr. Natasha is a neurologist. And obviously we admire her greatly. As for here on the home front, I wasn't planning on taking Ellie to the neurologist. In fact, I had several reasons why it would be a waste of time and had made up my mind we were not going. But alas, a beautiful friend helped us jump through red tape to see one of the (if not THE) leading neurologist in the area, so we went.
One of the most amazing things about this appointment was that another mom had warned of my coming (and yes I feel as if warning is a proper description). Thanks to this lovely friend - a mom who knows me, and who has an epileptic son treated by this doctor - I didn't have to come with a resume of why I am not crazy, or an explanation of my daughter's extreme situation. Once I got there I realized that was probably the last thing I had needed to worry about. It was easy to see why he is in such demand; he is phenomenal at what he does.
He took Ellie's novel long history, and we had an hour long conversation. He knew of FPIES, and EE, and ceilac, and asked very important questions like: has she been scoped? were her eosinophils checked? who was her GI? has she seen a geneticist? why not? He was even interested in her dissacharidases tests.
He asked about her allergies and why her chart just said peanuts and a couple other things. I explained that I was always told it was not possible to put the information in the computer. I told him what her biggest triggers are (dairy, soy, grain, corn), and emphasized corn. He typed away, and then said "Oh! so she can't do corn syrup, or corn....." I didn't hear the rest. I was floored! Did a doctor seriously just offer that to me without explanation? No argument about corn? or derived foods? He just kept typing. For the first time we were able to get that information spelled out in her charts. I was giddy. I commented: wow! most doctors don't even understand or believe that is a possibility. I said we were grateful to our fantastic allergist for that realization (to which he wanted to know who and said 'oh yes he is great.')
He then asked what she ate. I gave the 2 minutes version of the GAPS diet and its origins in SCD for Celiacs. I explained her current diet, and said that she would react to meats fed corn, soy or grain. His response while typing was a quick: "well, of course. That makes perfect sense." I about fell off my chair.
He confirmed what we have seen is most likely seizure activity, and believes she has heightened seizure activity at night. He asked a lot about what she does when she wakes up and how often. He said that night time seizure activity is common with kids like her due to body changes at night.
He shared several stories of healing, and treatments he has used for other children. The appointment was very full of information and conversation. He took a look at her spine and her sacral dimple/line, her hips and her turned in foot. He said there is possibility that one side of her brain is having more activity than the other which is contributing, but that he did not really feel that was the case. He has some tests he would like to run (EEG, MRI) and then discuss things further. And he finished up by saying he 'looked forward to working with her. She is a very interesting case.' I laughed out loud. Interesting indeed!