Tuesday, July 7, 2009

The 1st Seizure

Seems like I was always moving Jessica back from the TV. She would rock back and forth on her tumble form and watch Sesame Street or Mr. Dressup. Giving her thumbs up or thumbs down in her own way.

I have to tell you about her tumble form. It was one of those things that I 'felt' I had to buy her. Ever since she started wearing shoes I would have to uncurl her toes to put her feet in her shoes. For this reason, I would have her wear her shoes as much as possible to keep her toes from curling under. The tumble form was this barrel shaped vinyl form that she could curl her body on and push back and forth with her feet. This helped exercise her toes and I believe reduced the curling a great deal. She got the tumbel form when she was about 3 and after being recovered once, still has it to this day. (Although between her size and the feeding tube, she does not use it much anymore.)

There were times when Jess would leave the tumble form in the middle of the floor and walk up to the TV and get real close. It was one of these times that I glanced in the room to see her fall back with such force that it seemed like the TV pushed her. I went to her but she was already getting up. She laughed a bit grabbed the tumble form and started rocking back and forth to beat the band.

At her next doctor's appointment, I mentioned these episodes (as she had had a couple more). Her doctor thought it may be some form of a seizure and set up an appointment with a neurologist at CHEO (Children's Hospital of Eastern Ontario). They performed some tests with lights and also an EEG with lights as well. Her tests came back that indeed she was experiencing some seizure activity. I was grateful that she recovered from each episode so quickly (petit mal) and had no lingering effects afterward. Due to the "knock down" force they thought it would be best to see if depakene. This is an anti-seizure medication in liquid form that she would take in the morning. The dose was low and this infact did help reduce the instance of seizures. Every once in a while though, she would do a kind of head nod and sometimes drop which indicated to me and her team that they were not gone for good.

Speaking of an EEG. That can be a very traumatic test for a young child. Although it is not painful, it requires time to 'glue' the sensors on to their head and other parts of their body. They need to be still and calm during the readings. Jess required a mild sedative to have the test be successful. Because Jess enjoyed music so much, I would always sing to her when she was stressed. It did not matter who was present in the room, I would sing softly and quietly. There were times when staff would join in, many times I received complements on how Jess and I were in such tune with one another. I would give the medication to Jess that she needed as we had such a routine to it. To this day I still love demonstrating the way I would administer medication to Jess as it was over before anyone knew it and nothing got on her or my clothes!

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