Acknowledging people along the way

So someone might ask me what we were doing to stop these seizures. Did we try something different? By now, I was so scared to try another drug or change the dosage – it was too painful to see him suffer. However, in March when I took him for his appointment with the neurologist, she suggested that I try a drug, Keppra and gave me some samples. I hung onto them and kept procrastinating.

            In the meantime, another parent who is a nurse coordinator at the neurology department at the same hospital asked me about V. She had noticed him wearing the helmet so she was sure that he had a seizure disorder. We discussed what had been going on. She also said to me that she believed that Keppra was way better than the other drugs on the market. I was totally disillusioned with any of the drugs, seeing the pain he would go through. However, this person took up our case with the panel of neurologists and neurosurgeons to analyse if what had been done was alright or if surgery would help. Surgery is something we didn't want to do so young but if the panel had recommended that it was the only recourse – who knows? We might have given in even though he was only four. This is another person we are grateful to – she did the counseling from the goodness of her heart – no benefits. I mean it is amazing to encounter such people.

            I did try to reduce a little bit of both medications at different times during that summer. It didn't work – he lost bladder control and he had a terrible day. I thought that if we could possibly wean him off of both and then try keppra it would be alright but to give keppra over the two medications already in his system – I didn't want to. Was there another plan?

            I also want to acknowledge my husband's cousin and wife, who at the time lived down the road from our house. They were very close to the children. During this bad phase, on a couple of Sundays when my husband would have left for cricket and V was having a particularly terrible morning, with so many seizures that R and I were around him doing things, not leaving him one bit and I couldn't go to the bathroom or for a shower – I mean I could but I didn't have the heart to leave him – I had called them up and asked them to come over. They have dropped everything, come at a moment's notice and stayed on with the kids, giving me that little time to just go to the bathroom and knowing that while they sat on the carpet and played with him, it would be fine. He was so excited that they were around.

            Through all of this, I do want to again acknowledge the daycare staff who never once complained nor pushed back but kept up their love for V, as he did for them.

            It would have been ideal to have kept a log of what was going on on a daily basis, even maybe weekly. I did start with one on three separate occasions. However, I did not continue for the logs for the following reasons:

1. I had to have the discipline to do it daily
2. It was too depressing to record a certain number of seizures everyday particularly if I wasn't seeing any improvement during a large period of time.
3. I was constantly hoping that things were going to get better the next day and I didn't need to record this because it will go away.

  One of my favorite persons is V's speech therapist from preschool. She had done this job for several years but she was able to catch within weeks through her detailed observation what others might take very long or not at all. She remarked that every time he was having a worse day, he would be touching things - he would touch everything and everybody. That also translated into the night when in the middle of his sleep he would want to touch the pillow, feel around to make sure I was around, and his fingers would continue with this for a while before he could fall fast asleep - this might still happen even today during his sleep.

The other staff on the special ed. team in preschool were also great to work with and V liked each of them ( I think he has almost never disliked anybody). We had a great deal to learn from the OT specialist as well and his regular teacher. In the meantime, at his regular daycare/pre-school, the director there would come up with these suggestions through her experience that were more than useful.

            In January, it had been a year though since the seizures had started and his meds too; with my disillusionment with the neurology at hand and drugs, I decided to go the internet way,  looked up different yahoo groups for epilepsy and signed up for three at the time. Since then, the group epilepsy_kids@yahoogroups.com has been invaluable initially to learn from, then to give advice.