the steroids did not work

The smiling still continues. It continues at 3.30am in the morning when Zack woke up and thought it would be nice to smile at his mum in bed. Not daddy though. Just mummy. Who now spends most of her time entertaining him with loud shouting, bad singing and rubbing of arms and legs only because this gets the most smiles and every one of them still amazes me.

After our good news we had some bad news. The last EEG that Zack took showed no change, if only minimal, to the hypsarrhythmia in his brain. This meant that the steroids did not work. I said that. I knew from the beginning they weren't working so the next line of attack is a to try the next drug, Vigabatrin.

We went to see the doctor to discuss this medication and Zack's treatment. Apparently steroids are the first drug of choice in treating infantile spasms, followed by Vigabatrin. Due to infantile spasms being so uncommon in children not many studies have been done in the use of medication and the ones that have showed that those two drugs seem to work the best. The steroids however, did not work for Zack.

It is with huge disappointment that we are having to give Zack this drug. As well as making him sedated for the first couple of weeks another side effect is that it can damage the peripheral vision to his eyes. This is has only happened in a small percentage of children and it is thought that it happens usually when children are on the drug long term. So the plan is to give Zack this drug for six months. Hopefully this won't affect his vision. We have had to way up the chance of allowing Zack to develop to the best of his ability against the possibility of losing some of his sight. It is a hard decision but as Dan has said we don't know how good his vision is so if this drug works it could increase his vision and his ability to do other things.

To be honest I don't feel like I have a choice, I can't leave him as he is without trying to stop the infantile spasms. Whilst the actual visual spasms we see have greatly reduced his brain is constantly fitting because of the hypsarrhythmia, this in itself is making it harder for him to understand or do anything so we have to give him a chance. If this drug doesn't work then we may be looking at steroid injections and after that well, I don't know. I pray and hope every day that something will work, deep down I have a good feeling that we will get there, eventually.

We have decided to start the new drug after Christmas. I just want to have a couple of weeks without new drugs, appointments and worry, plus it isn't going to be much fun for Zack if he is sedated for two weeks. So come the new year, come the new drugs and fingers crossed more good fortune for Zack.


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