Despite his promise to his Dad to behave while he was away this week, Joshua had another seizure last night. Thankfully it did not impact on his sleep but my heart sank when I heard the familiar gutteral sound from the kitchen indicating that he was having a seizure and I rushed to reassure him.
Joshua underwent brain surgery last March, the most difficult decision we have ever made for him, in an attempt to remove or at least reduce his uncontrolled seizures. We met other families at Great Ormond Street hospital while we were there for a week and I have kept in touch with a couple of them through Facebook. I saw yesterday that one family were back at GOSH to see if their daughter could have her medication reduced after ’20 months of being seizure free’! While I am delighted that she has enjoyed such relief and success from the same surgery, I have to admit to jealousy that we did not get the same outcome. I should not be greedy, We do now get a decent run of seizure-free days, so we did achieve the reduction that they predicted, but to have had no seizures for 20 months, with a prospect of a life free of epilepsy, must be a magical dream come true and all of our lives would be transformed, not just Joshua’s!
Over the years we have tried numerous anti-epileptic drugs, all with their range of horrendous side-effects but only one seemed to make a dramatic difference. Joshua was still at mainstream primary school when he started on Clobazam and it was like somebody had switched a light on for him, he began to speak more and we got our old boy back. But that was a brief honeymoon period, just enough to give us hope, that did not last. He tried one horrendous drug that changed his personality into an aggressive child, behaving like a Staffordshire bull terrier, virtually snarling when he entered a room and throwing everything off surfaces onto the floor in anger. I asked the consultant at the time if this was a recognised side effect, which he denied and he scare us by saying that ‘this could be Joshua’s real personality coming out’. I knew that was not the case and so I asked at a Parent forum one night if anyone else had experienced the same behavioral difficulties with topiramate and the flood of responses was overwhelming and reassuring. We went back to the consultant and asked to change drugs and asked him to register our experience as a genuine side effect, but he did not see any value in that.
In 2010, we embarked on the Ketogenic diet, which had helped some children to become seizure free through an extreme version of the Atkins diet, where his food had very restricted carbohydrate and protein, but was high in fat. This was supposed to produce ketones which in some inhibited seizures. I fully embraced the horrendous recipes, he got to the stage where Joshua’s food was 95% fat and still no sign of the necessary ketones. The dietician had never known a response like it! we kept trying for six months but in the end admitted defeat as it was making us both miserable and Joshua no longer got any pleasure from his food and it was not working either. But the prospect of controlling seizures, with no drugs or surgery was a very tempting one.
So yesterday’s jealousy is not the first envy that I have experienced, and n doubt it will not be the last as we plough on seeking a solution for our boy..