We had our check-up apt. with the Swedish Keto team this week and we had a lot to talk about (another 2 hour apt.). It is a good thing we always go at the end of the day and are their last patient of the day. :-)
After a long discussion regarding the recent seizure activity we decided to increase Joshua's Keto ratio to try and gain back seizure control. So, on Wednesday this week we went up to 2.75:1 and then in a few weeks we will go up again to 3.1:1 which is where we were at prior to Joshua getting really sick in December. I am hoping this will do the trick to gain back complete seizure control. The Keto team does not think that the stamps and/or food coloring had anything to do with it, but it is more likely caused by his sometimes cheating and/or his Doose Syndrome doing what it does to a lot of kiddos. So, we will press on and increase the ratio and hope that things settle down. We are also going to increase the amount of MCT oil he takes in from ~20g to ~30g per day as MCT oil boosts ketones which should help stop the seizures. So far he has been fine with the increase in ratio and the added oil so that is good news!
They also want us to get new labs drawn in about 3 weeks so that we can take a look at his complete blood panel, med levels and ketone levels. We will not add any iron supplements until we get the new blood drawn as they want to ensure he really is anemic before making us give him another supplement since we already have so many to get in him every day. Also, he hasn't been taking his multi-vitamin every day so we are going to do better at that and hopefully that will help with his iron levels as well. We will stay tuned until we get his new lab work back in about a month.
Still no word on the results of his genetic testing so we are still in a waiting/holding pattern on that. I wish they were back, but we knew it would take several months to get the results.
We are supposed to go back to see his neurologist on March 18th, but I now have to go out of town that day so I will need to move that appt. I'm hoping to still get into the neuro in March as we have quite a lot to discuss. I was really wanting to talk about getting off Zonegran, but with his recent seizure activity I doubt that will be an option. :-(
We haven't seen anymore absence seizures which is great, but he is having some Myoclonic seizures still, although not every day. Last night he had quite a few - about 8 when I put him to bed. I'm hoping we are back to 0 tonight. Every night is a new hope for another seizure free day.
As if we didn't have enough Dr. appointments, we are thinking of going to see a behavioral therapist who can help us with Joshua's behavior as the last few months have been extremely bad/difficult and things have gotten even worse over the last few weeks. I think we need some outside help to deal with some of his behavior and emotional issues as sometimes we are just at a loss as to what to do. The good news is that this week we had a breakthrough regarding PJs and Chip won the battle! He has been wearing clothes last few days so it feels good to have gotten past one small hurdle. Hey, we will take the "wins" where we can.
Until next time......
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