I've been meaning to post this for awhile now and life seems to be getting in the way of my blogging time. :-) I wanted to post when Joshua hit one month seizure free and that came and went and before I could post he had a seizure so our "clock" had to be reset. Let me back up a little.....
December 13th was Joshua's "last" seizure for quite awhile and so December 14th became our new seizure free clock day 1. We made it through the rest of December without incident and the first few weeks of January so on January 14th we celebrated BIG time as we had made it one month without seeing a seizure. That was a HUGE milestone for us and I was beginning to think he would NEVER have another one and this Doose beast that we had been fighting would be dead forever. Well, I guess we should never get too comfortable. January was going exceedingly well until January 27th (Sunday) when Joshua had two absence seizures in our kitchen around dinner time about 20 minutes apart. The first one made both Chip and I pause and we looked at each other not speaking, but our eyes said "was that just a seizure?". About 20 minutes later Joshua was sitting with me at the dinner table and he went into a deep stare for about 5 seconds and Chip and I were calling his name and I was snapping my fingers right in front of his face to no response. We knew then for sure it had been a seizure and so was the other one. We both tried hard not to appear devastated, but it was hard. For me, the hardest part was knowing he has not had a seizure while being awake in MONTHS and I wondered if were going to descend into hell again. I was trying to figure out why Joshua would have two seizures this night and when I gave him a bath that night I noticed he had green food coloring on his legs from when he got into the cupboard earlier in the day. I also noticed he had a few leftover stamps on his hand from the day before. It dawned on me that he perhaps got carbohydrates absorbed through his skin from these products. I reached out to my keto peeps on whether this was a possibility and got some different responses. So, while I don't know if that is what caused his seizures, I'm certainly hoping that is the case because it is preventable in the future. Joshua has never been sensitive to environmental carbs like some kids, but this was a reminder that we need to be more vigilant as never know what can be a trigger. While going to bed that night I could not sleep so we had to put the baby monitor on Joshua again as I was just too nervous something was going to happen. Nothing did, but it just put me back in that old place of being so worried again - ugh!
Joshua also had a Myoclonic seizure on January 28th and again on the 29th (his birthday) shortly after falling asleep. They were small and not noticeable to someone who doesn't know what they are looking for, but I'm pretty certain that is what they were. So, we started Joshua's seizure clock over on January 30th and it had been going well up until today. Joshua fell asleep with Cole today in the recliner and Cole reported a Myoclonic seizure, but I can't be 100% sure because I didn't see it. However, Cole has seen a LOT of Myoclonic seizures from Joshua over the last year so it wouldn't surprise me if he could spot one. And, when I put Joshua to bed tonight I'm pretty certain he had one as well. So, we will re-start the clock again tomorrow, Feb. 4th. I would be lying if I didn't say I was nervous about the recent activity and am hoping like hell it is just a blip and not a return. I'm still keeping the FAITH and HOPE that we will beat this beast called Doose Syndrome.
We have another apt. with his keto team at Swedish next week so we will talk to them about the activity and see if they want to do anything - we could possibly increase his ratio on the diet. We'll see what they have to say. We also have another apt. with his neurologist in March and I will want to talk about weaning him off his last medication - Zonegran. I really want him off all his meds so we can see what his cognitive abilities will be like without drugs, but I also don't want to rush it, especially if we are seeing activity. Weaning the other two drugs did not scare me, but this one does. It is a fine balance to know what to do and when.
It is hard to believe, but we have gone past our 1-year anniversary of dealing with seizures. We first noticed Joshua having seizures (well, we didn't know they were seizures at first, but "something") in early January 2012. I suspect he was having them prior to us noticing and I will always wonder for how long, but our journey has been in full swing for 1-year now. For a long time in 2012, I just wanted to turn the clock back and go back to Christmas of 2011 before seizures took over our lives. I am now in a place where I don't want to turn the clock back, but want to move forward. I would NEVER want to re-live 2012 again and am hoping for a much calmer and happy 2013. So far, that is proving to be the case. Chip and I have survived the hardest year of our lives and proved that we are much stronger that we thought and that we are true team, in every sense of the word. Sometimes I am not sure how we survived and I know that none of us will be the same, but we continue to march forward having faith and hope that one day seizures and keto food will not consume our thoughts all day every day. Until that day, we will keep fighting for Joshua (and all kids who battle epilepsy) and if we have to, keep re-setting our seizure free clock.
P.S. Please educate and advocate regarding epilepsy whenever possible! It is so important to get the funds for research that epilepsy desperately needs.
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