I don't want him to have more drugs

So the Vigabatrin hasn't stopped the hypsarrythmia. I knew this, like I knew it hadn't when Zack was on the steroids. 

We met with the neurologist and he explained that there a few different options we can try. 

We can either carry on trying to aggressively stop the hypsarrythmia and go down the route of giving Zack two weeks of steroid injections. This only has a 30% chance of working and given that the last lot of steroids didn't work it's unlikely that this would be successful. 

Second option is to carry on with the Vigabatrin and take him off the sodium valproate which he doesn't think is doing anything for Zack. As the clinical seizures we are seeing are greatly reduced and Zack has become more alert and responsive it may be that we should forget trying to stop the hypsarrythmia but just keep the clinical side under control. 

Both Dan and I agreed to this plan. I don't want him to have more drugs, with horrid side-effects, just in the hope that it has a slight chance of stopping his hypsarrythmia. If he continues to progress as he is doing with the drug he is on then I'm  happy with that. 

We were also told about another drug that will be kept in the background in case Zack's seizures increase when we decrease the sodium valproate, I can't remember the name of it, but we can use it now Zack is a little older.

We also understand that it is highly likely that his infantile spasms will develop into epilepsy that he will have for the rest of his life. But we will just deal with things as and when they happen. The consultant thought there was a definite change in Zack and he reassured us that he will keep trying to get the seizures under control. I think this is just one of the areas that I have accepted is a war we might not be able to win but I still pray that one day it might all go away.

On a happier note I took Zack swimming again this week. The pool was blimmin' freezing plus it was only us in there so the lifeguard that was on just paced around the teaching pool continuously. I felt like we were being stalked by a tiger, very off-putting. I decided enough was enough, got us out, dressed and back to reception. The manager was there so I mentioned about the water being cold. Result. We get a free swim next time, wooohooo, if you don't ask you don't get.

After we had been to Alder Hey on Friday we went to Nanny/Grandad Price were Zack had his food and got fussed over. Then we went to the playgroup that the vision team had organised. It was busy this week and Zack nearly got kicked in the head by some little girl wearing Piedro boots. She also dropped a rubber disk on his head but he wasn't that bothered. His vision teacher popped him in the little room for safety and she remarked how he knew it wasn't his own room at home. He was feeling the sides for his usual artwork that wasn't there and waving his arm for his noisy bell. He also went into the sensory room for some light work, he got another well done and I was told that his vision is really improving, hurrah!!!


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