Parker's Promise

Ketogenic Diet.  So far so good! This has been an incredibly stressful past 3 weeks, but we are reaping the benefits.  The whole UCLA thing scared us pretty bad, but the benefit is that it jump started the ketogenic diet.  That week following was tricky because the two neurologists were telling us polar opposite things, but ultimately we REALLY want to keep our neurologist down here.

(Brief synopsis: We went up to UCLA for a follow-up study I had signed up for a year ago where they will do an EEG every 6 months.  The doctor that read the EEG at UCLA was VERY concerned and asked us to drive back up immediately and be admitted for a 24 hour EEG.  He diagnosed him as having "infantile spasms" which are devastating, but also treatable. The treatments vary from an intense course of ACTH injections or Prednisolone (with severe side effects), to other more mild including the Ketogenic diet.  As I was reading up preparing for the diet, it really stuck out to me every time is said "the ketogenic diet is particularly effective for infantile spasms," and that was at least 2 weeks before UCLA and I knew that diagnosis was even a possibility.  If you want to read more, feel free to read back a few posts- but be forewarned- it is detailed. :) Like I've said before, I am ultimately keeping this blog for my own records.) :)

The Monday following that UCLA weekend was full of lots and lots of phone calls back and forth between the two hospitals and passing on emails from the two doctors... (my doctor did not appreciate "too many cooks in the kitchen")... Finally that afternoon at 4:00 I talked with our neurologist down here.  We had a great conversation and for the first time in several days I was at peace.  My husband said that was because she told me what I wanted to hear- which was true, but regardless, I had been in turmoil all weekend, and now I was at peace.

We moved forward with the ketogenic diet.  This hospital transitions you in slowly as opposed to a "fast" for 24 hours followed by a strict ratio.  You transition at home instead of inpatient for a week.  We kept our original appointment and met with the dietician this week (Sept 16) and would have really started transitioning a week later from now- so next week.  Instead, the neurologist and dietitian were very kind to work with us over the phone and through email to jump start it and we started transitioning 3 weeks ago. We will be full force in 2 days!!!

I need to include the most recent days, but check this out. (I really love that my husband is an engineer)

Yesterday he only had 4 seizures, one of which had only 2 "kicks", 1 had only ONE KICK!!!  I have hesitated to post anything because I didn't want to jinx anything. Each day has its ups and downs, but the morning we went to UCLA he had them every half hour ALL morning.  The seizures at that time each had 14-20 "kicks." Now he is down to sometimes 3-4 episodes a day total.

The other thing that is so great is he is more alert!  He is more engaged, alive and interactive.  A few nights ago I was playing with him on the floor and he sat by himself for 2 minutes!  My kids came in and were playing with him and he was laughing and engaging with them.

Yesterday at preschool his teachers were SOOOOO excited to tell me that he had actually played with the toys!  His attention span was much longer and he was not just trying to chew on stuff constantly.

I will take these side effects any day.  The side effects of the drugs the UCLA doctor wanted to put him on were severe and scary.  It suppresses the immune system so much that an ear infection can be fatal, or a fungal infection like we've been battling between his fingers he constantly chews on for the last 4 weeks could become septic.  With 3 older kids in school, that was very concerning to me.  I am so grateful that we went to UCLA and learned what we did.  That doctor told us to immediately go off the Vimpat which can make this type of seizure worse.  That was exactly what we needed to do.  We titrated off immediately and saw a marked improvement.  Our (then) current plan had been to go up on it.  I am also so grateful that we did as much research as we could, communicated with both doctors and ultimately went with out gut and what the spirit was telling us.  Peace. I like peace.

The Sister Missionaries came by to visit this week and one of them recently went through chemo.  We had a great talk and she let me read through a list of quotes she has compiled that have really helped her. I read this and immediately knew I needed to copy it down.  The funny thing is, I read it to my nurse, and then the next day I was really stressing out about something and she said "you just need to do what that quote said that you wrote down yesterday." Why Yes.  Yes I do.

When God asks us to step into the dark, we need to remember that it is not dark to Him.  He sees it all.  So when He asks us to take a leap of faith and go into the 'unknown,' 

He is simply inviting us to see what He sees.