Parker's Promise

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.  

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*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...