I have been waiting for things to stabilize to update the good (or bad) news, but it fluctuates constantly- so I will just update.

Last week we increased a new seizure drug and his seizures decreased to only 2 a day!!!! But then Sunday he had a 6 minute cluster seizure with 28 spasms and the last several days he has had 10 clusters a day.  At least they are shorter, but 10? We just went up again to see if it helps, and then we will take him off and try a new one.  We might aim for one more geared toward infantile spasms.

With the diet- I am not convinced it is decreasing his seizures much, BUT it is helping his cognitive development immensely!  Everyday he is more alert, engaged, and alive! So that make it all worth it.

We have not been able to get Parker in ketosis and stay there (he is often in trace or small). I talked with the dietician and we decided to do only ketocal 4:1 formula this weekend to see if we could get him into larger levels of ketosis.  It worked.  He is in much higher, BUT his seizures are much worse this weekend... Ugh.  We think it might actually be the formula since when I've tried using the formula before, he seemed to have more seizures.  Now we will try plan B of the diet with more MCT.

I went up to UCLA for a different part of the study (the appt was not what I was expecting and a bit of a disappointment), but the highlight of the trip is that I was able to meet with the Neurosurgeon that did the surgery that saved Parker's life.  I have tried every time I've gone up and he has not been available.  It was good to see him and say thank you.  He suggested getting a hemispherectomy consult.  If he has failed 2 or more medications (5 so far), and he is on the diet and still seizing, he is a candidate for hemispherectomy.

So, the doctor that specializes in epilepsy suggests medication.  The doctor that specializes in infantile spasms says he has that and and to do ACTH.  The doctor that specializes in surgery says hemispherectomy. Who do you go with?

So far the medication and diet are not working, ACTH has scary side effects- and the other option is open brain surgery to remove half of it.... which is also pretty darn scary.

Does crying help?

And I know things will work out, and I need to have faith, and things could be worse... but it really hard to see your little boy seize so much...

I so want this diet to work.  And it may still (just not with formula).  We need some other options, and maybe surgery is more of a possibility.  I was actually talking to my mom on the way home from UCLA and telling her about my conversation with the neurosurgeon.  She said "I can tell you are in a different place than you were a few months ago since you are telling me this so calmly."  I have been calm and at peace, but also anxious and concerned? Is that possible. Maybe it depends on the moment. :) I am open to suggestions.  I am looking into neurofeedback, VNS and even cannabinoid. Seizing every half hour is not an option.

And on the bright side, he is more alert, engaged, he is sitting GREAT! and doing well in so many areas.  There are at least those side effects of the diet.

So deep breaths.  Get lots of sleep. Inhale lots of Balance. And have Faith.

This was a good weekend to have LDS General Conference.  Two days full of wonderful speakers.  

***

*It will all work out. * Don't be discouraged. * We are the clay and God is the Potter.  We need to be centered on the wheel- on Jesus Christ for Him to be able to mold us. *Be patient. The Lord has a plan for us.  *Seek not to counsel the Lord, but seek counsel from Him. And if we want counsel we need to be prepared to take it. *Be engaged in intentional parenting.  Children learn when they are ready. They were God's children before they were ours and He loves them so much.  * He will guide us. Helen Keller's teacher was a miracle worker and so can we. * No matter how intense the darkness, we choose how much it affects us.  Peter called out "Lord, Save me." There is nothing wrong with asking for help and relying on the light of others.  * Have peace.  Finding answers is not an event, but a PROCESS. We will all face trials- we need to hold fast to the iron rod. * Let your light so shine and be an example of the believers. Make Christ the center of our lives.  He gives Hope to the hopeless and Strength to the weak.  * Focus less on what I can't do and focus more on what I CAN.... And so much more...

This was so great. And so true. And so timely. This was totality my book club last night. I still feel so new to this special needs thing. This post made me laugh, cry, and feel understood. Thanks for putting up with me my dear, dear friends.

https://www.yahoo.com/parenting/when-i-make-casual-conversations-awkward-as-a-129240791171.html?soc_src=social-sh&soc_trk=fb

For several months, we have been able to sing about 2-3 notes to Parker and he would sing and match the pitch.  Higher or lower notes were a lot harder for him.  The past two days, he's matched five pitches, both in order low to high and when I skip around.  He will also match them exactly instead of starting to sing and moving around until he locks in to the right pitch.

When you are tune an instrument, if you hear or feel vibrations, it is out of tune.  You adjust your instrument or mouth (embouchure) to match the pitch and get rid of the vibrations. Parker will do that.  When I sing a pitch, he will match it exactly, or go up or down slightly until he locks in and the vibrations are gone.  Kind of technical, but really cool. :)  I just want to record this today so I can remember his progress.  I hope to get a video today.

Seizures are up and down.  He will have good days and bad. Today was bad.  He had eight!  I am not sure exactly why, but his ketone levels were also really low. Hopefully there is a correlation. 

But as I write this, it puts things in perspective.  It was really hard and discouraging to see him have eight seizures, but up until 2-3 weeks ago that was a daily occurrence, yet worse. 

Perspective is good.

I feel better. :)

Guess who just sat for 10 minutes!!! He went from 1 minute a month ago, to 2 minutes last week to over 10 minutes today without support or falling.

He also started making this little laughing sound when I ask him a question. He is responding and communicating! Today he signed "more" and signed "go" on command, and he matched pitch on several notes every time I sang with him. Several of these things he's done before, but to do them all in one day, several times on command.

He does seem pretty tired, which might be from the diet, but he is also working hard. Today has been a "bad " day for seizures and he's had 5. I will take that. :)

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.