Finlay

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My Finlay was born in March of 2004. He was our second child, first boy and we were absolutely delighted to be his parents. He was an extremely easy child, only cried if he was hungry or tired and once we started to recognize his cries it would be a little whimper only. There was a moment when he was just a few weeks old when we should have realized something wasn’t quite right as he cried and cried during the night, we fed him, changed him, winded him but nothing would soothe him until I eventually laid him down in his cot. He gave the biggest sigh of relief and went straight to sleep. After that, he wasn’t comfortable sleeping in his car seat or pushchair. It was as if he simply needed his bed or at the very least a properly sprung mattress. All this was very ironic for Finlay was the sleepiest child ever. It wasn’t unusual for him to sleep 14 hours at night and I’m sure it would have been more if I hadn’t gone to wake him up. He would have a feed and then he simply had to go back to bed. He slept so much. Whenever he was awake he would be dosing off. I now realize that he was having seizures but his eyes would be rolling into his head.

 

Despite being very sleepy, Finlay was still meeting his milestones, although he didn’t walk until he was 14 months old, and he hadn’t started to chatter yet. By the time Finlay was 18 months old I was expecting my third child and I was having some real concerns about Finlay. There wasn’t anything out of the ordinary BUT there was something not right. If something went past his head he would bite it. Now this wasn’t unusual for an 18 month old child but we had began to call him the "Smiling Assassin" because he was smiling and would bite but he didn’t seem to know he was biting. Anyway, after much deliberation I asked to speak to my Health Visitor. I almost cancelled but went through with the appointment anyway. After discussing Finlay with her she suggested that he might be having Absence Seizures. This completely and utterly came as a total shock and we were sent for an EEG. The first one we had was inconclusive and so we were sent for a sleep deprivation EEG. We had to travel 2 hours by car with a child who had been deprived sleep. That was not fun at all. As soon as Finlay was attached to the EEG machine I was able to see a very distorted EEG pattern. It was painfully obvious, to my untrained eye, that Finlay was having hundreds of seizures at that very moment. He was initially diagnosed with Absence Epilepsy and put on one medication. Immediately, my son was completely cured. For a full week, at the lowest possible dose my son had no seizures and his cognitive development blossomed. Then, we began the horrendous chasing of the mythical dragon.

 

We never ever saw a difference from medication again like we did that first week. Although, we have seen huge improvements with every medicine Finlay has tried, the improvement has only been temporary and never been nearly as good as that first time. With every drug there have been some side effects varying in their nastiness. We have experienced the dreadful behaviors from an overwhelmed Finlay who has had too many seizures, tired and being asked to do way too much by his parents or school professionals.

 

We have lost friends, we have had to battle ignorance. We have children who have been scared to bring friends home as they can’t guarantee Finlay won’t expose himself. However, we have a very gorgeous human being who honestly believes he is Batman. He makes us all laugh, cry and rage. He’s our Finlay. If we could cure his seizures and take away his anxiety he would be perfect to me.