I have not updated in a while but there have been so many changes. In September we decided to take Ava off of the ketogenic diet. Not because it was not working but because when she fell out of ketosis there were no seizures (myoclonic jerks). This was the case for about a year. For almost six months she showed no signs of seizures. She dug into her meals with so much enjoyment we were so happy with our decision. Then one morning I put her in her high chair to eat her cheerios and went into the kitchen to make toast. She had waken up full of smiles and I had no indication on what was to come. I heard the rattling of her chair and I thought first that she was choking. I raced into the other room to find her in a full on tonic clonic (grand mal). This was her first ever of that seizure type. I knew what it was and yelled to my husband who had just gotten off the night shift as a RN. He knew just what to do and did it calmly while I called 911. Her seizure lasted about 4 minutes and when the first responders got there she was in the post ictal phase. That phase lasted about 8 minutes before she started to cry. The first responders were amazing. The living room filled up with people and soon the paramedics arrived. My neighbour came and took Meggie (my six year old) with her to her house. They gave Ava oxygen and loaded her in the ambulance. I asked if I could bring a bottle to calm her down but they didn't want her to drink until she was checked out by a doc. About 15 minutes into the trip they changed their minds as Ava was inconsolable ;) We pulled over and took the bottle from Craig who was driving behind us. We got to Liverpool and the doc there called the IWK childrens hospital for advice. After about 2 hours they discharged us saying it was probably a one off. We got 7 minutes away when Ava had her second one. It lasted 2 minutes. We sped back to Liverpool. I told the doc that we were not going home that we wanted to go to Halifax. He said he had already called in the transfer. I got into the ambulance with Ava and when she had her next seizure I could see that one coming. It was awful to see. Her face twisted up tightly, eyes fluttering arms and hands tight and then the shaking. This one was again two minutes. Afterwards she passes out with exhaustion. At the IWK we are met with Ava's old neurologist Dr. Wood. She held Ava and asked what the seizures looked like. As she asks this Ava goes into another (despite just been given drugs) This one was less shaking but lasted nine minutes. My husband was watching the monitors and freaking out. He kept shouting what is happening. What I couldn't understand at the time but he did clearly was she was quickly desating. Her oxygen level went down to 20. Code blue was called but by the time the team got there she had already recovered on her own. They kept us up on neuro for 4 days for observation. Ava the next day tried to crawl but was too weak. Her arms and legs would collapse. But her spirits were high and the drugs were working. It took both her and us a while to recover from that day. It is now six months later and Keppra continues to work. We hope this is the last we see of them but we are also prepared with adivan and the ability to call 911.
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