an unexpected eeg

We got Ava up at 6 a.m. and dropped Meggie off at her grandparents and drove the 2.5 hour drive to the IWK. I was anticipating a great EEG because I had seen very few seizures (jerks) in Ava in months (two). When we got in they began to place the electrodes on her head and stuck them with a sticky gel. The eeg reading came on and I saw a nice steady stream of normal brain waves roll across the screen. No spikes. Ava drifted into sleep about 15 minutes in and suddenly her leg flew up in a jerk and her shoulders spasmed. I counted 10 obvious jerks and I couldn't believe what was happening. Why? In ketogenic mom mode I grabbed the paste they used on Ava's head and read the ingredients. Glycerin (a sugar alcohol) was third on the list. How does an EEG technician in a hospital that implements the ketogenic diet not realize this is not allowed and will throw a child out of ketosis? Now the results are all messed up and we will have to wait for three months to have a repeat eeg.
Grrrrrr.
In the new neurologist office we were slightly thrown and it took us a while to gather our thoughts to finally get out the questions that needed to be asked.
What will happen next?
He wasn't sure because every avenue had been checked in the regular process of finding a diagnosis.
So I said, fine now we know what she has is not regular, let's start going down alternative roads to figure this out.
We pressed the issue of Ava not having tears and asked the neuro to check of the possibilities of this as a clue.
He didn't seem to think that Ava showed any other symptoms (other than developmental delay and seizures) that would point to one of the possibilities where a lack of tears (alacrima) is a symptom. We thought he had brushed off the idea (disappointingly) but then near the end of the visit he said thoughtfully, how long has Ava not cried tears (since birth). Hopefully this means he is now thinking about it. Again he is mainly a researcher so that is why we wanted him, we felt he would be willing to look outside of the box in order to find a solution to the problem.
Time will tell.
He had a few different opinions than our old neuro (who we liked but needed a different opinion).
When I asked him if where he thought Ava was developmentally (mild, moderate, severe, profound) he said that when Ava first came in she was definitely severe (what her old neuro said) but watching her now he would say moderate. This was parallel to what her recent developmental tests have shown. That she has jumped a category in development from 3 per cent to 7 per cent (as compared to the rest of the population her age.) I hoped that this jump would become a trend. Most likely it is a jump because of better seizure control.
I asked the neuro why Ava was most responsive, alert, imitating and engaging the first week we initiated the diet as compared to later. He thought that maybe it was because she was on a combo of drugs and diet.
It is something to think about. Maybe going back on Depakote for maybe three months alongside the diet to see if there are greater improvements in her development. If there is we stick to it, if there is not we wean.
He also thought that the seizures were causing delay. Something her old neuro said the complete opposite. I hope he is right,at least that is something we can work with.
He was very positive about Ava's development. He said she is definitely moving forward. He said that at least she has not stopped or worse gone backwards. He said that it was very encouraging that she seemed to want to move on to the next step and was eager to try.

All in all it was a long and confusing day full of good and bad. We figured Ava would be beat by the end of five hours total in the car but driving up our street Craig shouted out to a neighbour Moody! he yelled. Ava thought this funny and laughed. As we drove along Craig would repeat the yell to Ava's histarics as she would dissolve into giggles and look up in anticipation for Craig to yell out again. She then stayed up till 10:30 full of laughter and movement. She was hurling herself across our bed from sitting to all fours to laying with such speed and laughter as Meg played peekaboo with her that by the time I put her to bed she was covered in sweat and still quietly giggling to herself. She blows me away sometimes.