We have had K on his anti-seizure medication now for just over 4 months and so I thought I should update the original post on this topic.

Many of the initial side-effects have completely disappeared and he tolerates the medication very well, sometimes even wanting to administer it to himself (we call it his “orange” as he takes the orange flavoured liquid), with none of the potential stomach upset or very serious rash that can occur. The “blinkiness” is gone though he does still get tired about 30-45 minutes after receiving his dosage, this is especially noticeable if he is not able to be active after getting his dosage like if we are traveling in the car for example.

K has, up until very recently, been taking 50mg 3 times daily and we have only seen some seizure activity on a couple of occasions, and one morning’s seizure activity was “dad-induced“. We have begun to see that he has had some episodes that we have begun to question as seizure activity and therefore have increased his dose to 60mg 3 times daily. We are now monitoring if this is going to be sufficient to keep his seizures under control. We had some concerns about increasing his dosage, but considering his neurologist first prescribed a significantly higher dosage we are keeping that in mind.

In retrospect I consider the decision to put him on the medication one of the best things we have done for K. Though it was not readily apparent that his seizure activity may have been holding him back or having any detrimental impact on his development, the results since starting the treatment have spoken for themselves. He is continuing to make good progress in his intervention sessions as well as at preschool and it has seemed to have had a positive impact on his personality as well (though lately his personality is very much mischievous). Any concerns that we may have had early on have been put to rest and we are glad that we took this step.

It can make some things more difficult to manage as you need to be mindful of drug interactions and ensuring we always have his medication with us, but the end result has definitely been worth it for us, and more importantly for K. I am the last person to recommend starting drug treatment without weighing all the pros and cons and doing as much research as possible and asking a lot of questions of your physicians, but this is definitely something I would recommend to someone in a similar situation.

We are always willing to share our thoughts if anyone has any questions about our experiences. Please feel free to contact us or leave a comment.

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