A little to busy.
At my last update we had just increased medications with Ethan. It has been really hard to get rid of these slight drops. He was having maybe 10 - 15 drops a day. The Keto team suggested that we increase his depakote again. Increasing any drug is always a hard thing for me to do. Sometimes it will work in the long run but other times it only makes his seizures much harder. This time it made them harder. Two weeks into the higher dose he has dropping so hard that he was smashing his face again. I have never really seen this drug decrease his seizures. The doctor staff thinks that we are just not at the right dosage yet. They are hoping things will get better with each increase. We have been playing with this particular drug for nine months now!
So this last week I went with my gut and did something that went against everything the doctors have been telling me. I started to wean the depakote without their permission. (eek!) I was so scared at first but also SO incredibly tired of watching him hurt himself. He has one cut on his forehead that seems to never heal. It gets cracked open again before it has a chance to get better. I figured that if the depakote is making him worse with each increase, why not start to wean it and see if he gets better? Makes sense to me. So we did, and guess what... we have had what I want to say are some seizure free days!! He has had 2 drops (or so we have seen) in the last week and one grand mal. That is so awesome! I know the dangers of weaning a drug means increased seizures...but we aren't seeing any. Praise the Lord!
We have an appointment with the Keto team in Seattle tomorrow and I am going to have to confess what I did. :( I am not sure how they are going to take the news but I am so happy that his little brain is getting a break.
In other news Isabelle brought home lice from school. UGH! It spread to Ethan before I realized that Isabelle had it. :( So we had to treat everyone. But how do you kill lice on a keto kid? Well you use mayo. Yes, mayo. The kids had some time off of school called, "mid winter break" this last weak. So we spent one entire day putting mayo in everyone's hair and then walking around with shower caps for the remainder of the day. It was gross! Have you ever smelled mayo for 6 hours straight? Or had it run down your face and neck? So not fun. Oh and we also got some great "awkward family photos." The mayo only kills the live lice. So after a couple of shampoos to get the mayo out we then began the process of endless combing. We are still combing and combing five days later. The positive in all of this is that Ethan was having some good days so we didn't have a lot of seizures on top of the lice.
Whew! It has a been a long three weeks.
Thanks for your prayers!
Tomorrow as we meet with the Keto staff we could use prayer for:
Wisdom in decision making
A better eating plan for Ethan
Complete seizure freedom
A lice free home