Karter remains on the Ketogenic Diet. Looks like the last post was in July just shortly after our 1 month appointment, time really has escaped me.
Here is the quick run down...
August brought about some crazy contracts to the results we were seeing in July and Karter was having a lot of seizures. Enough to make us feel like the diet was not the success we had hoped it would be.
Early in September the team made some very minor tweaks to the ratio of his diet, accounting for the small amount of carb ingredients in his medications; this launched us into a 93 days seizure free run! The best we had ever had. EVER! We we so thankful. We were even able to take him completely off one of his medications.
The diet gave us back the Karter we felt we lost a number of years ago when the seizures started becoming more persistent, post surgery. He was more engaged then ever before and we were starting to see gains developmentally that we had not ever seen. We are so thankful that these things continue today.
December saw a couple of seizures but still very much a success.
In January and February we saw an increase of seizures and by early March we were into a very regular pattern of daily or every other day seizures. This was disheartening. We did not change a thing but all of the sudden the formula that gave us three months of seizure freedom was no longer working and we were frustrated.
In the middle of this month, we increased one of the seizure medications. Honestly, this felt so counterproductive. We had worked so hard to get to a place where we could come off medication, just to increase the dosage. That said, for the first time in years, Karter has put on weight; almost 8 pounds since last June. It is speculated that his meds were imbalanced because of his growth and weight gain.
A week after the increase we saw no change and with seizures multiple times per week, we were feeling like maybe we needed to talk about the option of coming off the diet. Although we had seen some amazing results, the diet had side effects and we have to be smart and weigh out the risk vs benefit for Karter's sake. If we are not seeing seizure freedom, better than before we were on the diet, then what is the point? Not only is it labor intensive in its preparation it is regimented and strict in its format and limiting in what we can offer Karter.
We talked with the team that they said there are a few more things we can try to tweak the diet. We had agreed to take a couple of weeks, do some blood tests and make some adjustments. At that time we were just heading into Spring Break and decided that we would hold off on changes until we were back in town and in routine again. That week, we had 6 seizure free days; the most in a row in a we had in a long time.
And then, this week, Karter got the flu...
We ended up at Children's hospital emergency yesterday because Karter had an incident called Status Epilepticus, which basically means "state of persistent seizure". Karter had two episodes of non-convulsive SE; one was more than 20 mins the other almost an hour. He was completely unresponsive both times but was still in a semi-conscious state.
The SE was brought on because of sickness and we have been given "rescue" meds in case an incident like that would ever happen again. Karter is doing much better today and I speculate tomorrow he will be close to 100%. I am so thankful for such and amazing team of people that work with and for Karter, none the less, it was a disconcerting incident that we hope and pray will not happen again.
When we were in hospital one of the doctors said to me "consider this a small hiccup". That has stayed with me for two days. I have been really thinking about that a lot. We had 93 seizure free days, that was bliss and we still rejoice and celebrate those 93 days! On the back of that, we have had a couple of months where we have not seen the results we desired. "Consider this a small hiccup." I am praying for another 93 days and then some!