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.

So it was this past Thursday the kids and I were in the car heading off to school when I had the overwhelming sensation of having forgotten something. A quick inventory; 2 kids, lunches, backpacks, communication book it was all here and we were early too, something was just not right. It was not until lunch time when I received a call from Tracy that it came to me in a rush, I had forgotten to give K his anti-seizure medication! We had started documenting our experience with using Tegretol to control K’s absence seizures and how it was affecting him, his school, and his home life. Suffice it to say, after what transpired I don’t think we need to have any discussion about whether we continue to use the medication or not.

Miss M. and Miss C. from his pre-school are so incredibly tuned into K that when Tracy came to pick him up they asked if we had changed anything or if anything new was happening with his treatment. He not only did not appear to be himself but they witnessed 3 minor episodes in the short 3 hours that he attends. Since we got his dosage stabilized and have been giving it to him routinely, except for this minor transgression, he has not been having any seizure activity that we or his pre-school have noticed and in my opinion has really been having a developmental spurt.

I feel that since his dosage has stabilized that he has really been improving. He is much more interactive with us and his sister as well as more communicative. We are really beginning to see his personality come shining through and though I was never really sure that we were seeing a lot of seizures the medication has definitely been helping. The recent flourish in K has very likely been attributable to the medication, and I think I confirmed this with my unintentional, yet very informative, experiment.

In our discussions with the neurologist it became very clear that despite our best efforts at trying to measure the frequency and duration of his episodes, it is very difficult to distinguish them from “daydreaming”, especially if the duration is quite short. After a lot of questions we decided we would try him on the medication for a couple of months and see if we notice any improvement in his episodes and in his ability to learn. We are going to rely heavily on his preschool team here as they do a great job of keeping track of his seizure frequency and communicating with us what is going on with K at preschool. Currently it is hard to know if his seizures are having any impact on his ability to learn and progress, though if what we have been seeing over the last couple of months is any indication it is fairly safe to say they are not holding him back too much.

As we continue to work on getting his supplement schedule worked out and his deficiencies remedied it will interesting to see if they may have been contributing, or causal, factors to his seizure activity. I have read in this article as well as here that dietary insufficiencies can be causal/mitigating factors in seizures. Now the only problem will be trying to discern which treatment may be causing the desired effect.

K’s bloodwork all looked good too, which is encouraging. Many of the tests are not exactly similar to ones we had done in March but we are able to make some comparisons and to deduce that some of our nutritional treatments are starting to work. That is reassuring given the number of supplements we try to get him to take in a day. I’m sure that will be the subject of another post as we are having his test results and supplement schedule reviewed and I am curious to calculate how much we currently are spending on supplements. I will likely post his schedule and monthly cost breakdown should anyone find this information useful or of interest as they look into this form of treatment.