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.

New neurologist

We are going to Halifax tomorrow to see the new neurologist. I hope he is who I think he is. When we were in the hospital for a week initiating the diet every day a dozen neurologists would come in on their rounds to say good morning (procedure). Thinking to at least make use of this quick visit I would research and write down possibilities on the huge white board as well as any questions that might pop up. Eventually when the neuros would walk into our room the would look up at the board instead of us and rule out all my suggestions of what Ava could have. But they all gave me the impression they just wanted to leave. Plenty of patients to see. The only exception was one neurologist. When Ava got a rash we buzzed the nurse to see why. She paged the neurologist on call but told us because it was late he wouldn't come till the morning. But he did (10:30 p.m.) He sat on the edge of the bed and checked over Ava and immediately said it was just contact dermititis and would be gone probably by the next day. Then he kind of tilted his head and went hmmmm, what could it be? It was the first time i'd seen an interest to Ava's puzzle (one that I could see outwardly). He then said that not all children fit neatly in a box for diagnosis and I knew this was the doctor I wanted treating Ava. I hope that he is able to shed more light and possibly find a diagnosis. He is also a researcher so i'm hoping this puzzle of seizures, delay and lack of tears will appeal to his inquisitive nature. We shall see. I am interested to see if he chooses a different approach than her old neuro.

Ava turns two!

Well today Ava turned two! It was a landmark that used to scare me but as the day drew closer I realized there was nothing to fear. I guess it scared me because it was a reminder of all the things a two year old should be doing but I a have long since accepted the pace of Ava is just a part of who she is. I can guide and help her along but with her stubborn streak (like her mama) there is no way to force her to move any quicker than she is ready. Plus I can't help but celebrating the small but at the same time enormous milestones she has reached this year. Although if I were to list them it would not sound like much, I think it is just the wonderful character that is Ava that we have been getting a chance to know and love. Last night we had a dance party in the living room with Ava and Meggie and Craig and I and we swirled and laughed about the living room. Meggie had the grace of a ballerina (surprising with how klutzy she is!) and Ava bounced a bit and squealed in delight as I threw her in the air and caught her in a swoop, spinning us both around until dizzy with laughter.
When our dancing was done I got started on the keto recipe for chocolate cake that was given by Ava's dietitian. What a cake! I was worried after searching the Internet that I would have to rely on a cheese cake that she has eaten on many occasion but instead I received a recipe with coconut flour, sugar-free chocolate pudding and a bunch of other ingredients that turned it into a cake that was delicious for everybody. I quickly quadrupled the recipe and made cupcakes for her entire class and teachers for everybody to enjoy. At school I popped in to her school during lunch to watch her blow out her candles (with the help of Meggie) and I couldn't help feeling proud as the whole class munched happily away at the keto cakes without missing a beat. No one knew the difference and when Ava leaned into her neighbouring child to swipe at the icing I didn't jump up to stop her. The teacher, who loved the cake better than regular cake, asked that I teach their cook to make the cake for other birthdays in Ava's class. Success! The icing was one made with cream and sugar free chocolate pudding powder that formed into icing within minutes in the fridge and Ava just had to drink about 78 grams of straight cream in order to make the recipe a 4:1 but since luckily Ava loves cream, that was no problem.
The morning of her birthday Ava seemed to think something special was going on because she was even happier than usual and as I buckled her into her car seat she passionately and unexpectedly grabbed my arm and aggressively brought it to her mouth. I thought she was about to bite me although she has never done that before but instead she kissed me several times with such force I squealed with laughter. So sweet.
We took her out of school early and brought the girls to the fair and to supper (Ava's was prepacked...shrimp with butter and strawberries and cream with a bit of oil hidden in it).
She opened her gifts (with Meggie's help again) and liked the dancing Pooh bear that would only move if you shook a rattle but was terrified of the blow up fort with the trampoline. Anytime I would try to inch her closer to it she would throw herself into my arms and it felt like she was trying to climb up behind my neck. Again a first for her. I see a lot of quicker movement from her lately, although she really hasn't mastered any including sitting with her slouched posture and occasional falls.
Lately she will be sitting and then she will throw herself into four point crawl and then flop on her belly and go back to four point then sitting. She can't keep herself into crawl because of the lack of tone in her midsection but we have been trying to combat that by following her physio, Stacey's suggestions of working on the balance ball three times a day.
Ava loves Stacey, she spent the last appointment trying to kiss her the entire session. As Ava's drooly kisses are usually the things only a parent will love I couldn't help but laugh at this.
There really were no sad parts of the day for me, just sentimental which is new for this year's special occasions. I asked a friend of mine recently if he ever got sad when these big milestones came for his child but he said that over the years you take the small triumphs in their life and celebrate them.

So we are all moving forward in baby steps and learning much more than we ever thought we would have to learn in this life. We are even laughing quite a bit along the way and just getting to know each other as any family should. That is better than where I thought we would be only 11 months in to being told that Ava had severe developmental delay and seizures.
I still think about that often. The day I asked Ava's pediatrician if she would have a chance at a meaningful life and he point blank said no. But that is not true. Her life is meaningful now to us and to her and to all the people that know and love her. She cares what people do and loves to be cuddled and fears (trampolines) and laughs and loves. She is entirely her own person and we love who this person is with all our hearts. Happy birthday my sweet!