I have really hesitated to say anything in case I jinx it... But Parker has been seizure free for 29 days!!!

This has been incredible and miraculous!!!! but also worrisome and disheartening because the side effects of these seizure drugs are so hard.

But mostly I am just so grateful for this sweet tender mercy.

I don't remember the last time I posted, but several weeks ago I had a devastating phone call with my neurologist that left me sobbing and probably the most hopeless I have ever felt. My sweet 10 year old daughter came over and gave me a hug, and then wrote me this:

Being BRAVE is not having no fears, but having the courage to face those fears.

We decided to start a new drug- Depakote. We did the normal drill of starting the drug, then increasing each week until the side effects were too bad, then going back down to see if there were any effects. Most drugs he's been on have increased his seizures and they improved only after we came down and off each drug. Depakote was weird. It at least had some effect. In some ways he was better, in some ways worse. Many of his clusters would only have 1 seizure, then others would be worse with even up to 28 seizures or spasms in a cluster. And so inconsistent. Usually he is consistent almost to the minute. See??? Weird.

I began researching more about a hemispherectomy and asked my Neuro if we could try Sabril, a medicine for infantile spasms. My plan was to rule it out before pursuing surgery. I really didn't want to start it because it has a box warning that it can cause permanent peripheral vision loss. But in the grand scheme of things, this risk is much less invasive than removing or disconnecting half the brain...

Anyway. Long story short. We started it Friday...  And he was seizure free on Saturday! He has remained so for over 4 weeks. I still have trouble believing it. He went from averaging 8-10 clusters with a total of 20-50 seizures a day ... to zero.

Normally you start him on the lowest dose (5 ml) and move up 2.5ml until it works. He responded on the very lowest dose, but was also super tired, lethargic and even flaccid so we brought it down 0.5 ml after a week to 4.5 ml.  And down again the next week. And again. And again. He is now on only 3 ml.

At this dose he is seizure free and not nearly as sedated. He is still not walking in his gait trainer like he used to, but he rolled over in his crib this week, and he noticed and pulled at a poopy diaper for the first time since his accident. He also is grabbing my food and reaching for toys. I can finally say he is officially sitting. I can now set him on carpet surrounded by toys and walk away for a few minutes!!! With minimal support he can both pull to a stand and sit back down into my lap. He can stand with me only holding onto the back of his pants.

He eats extremely well and is getting pretty good with a spoon in his left hand. He still doesn't drink but I am going to be able to focus on this and other things now that the seizures are under control for the moment.

I was gone this week and he said "mama!" He signs "go" consistently and "more". He is happy and engaged and I am so grateful.

Oh. And we're moving this week... to Minneapolis.

Like I said in the last post, things have been anything but stable.  Some days he does GREAT!!!  Other days Parker has tons of seizures or is super sleepy from the drugs.

Some great things have been going on, though.  First off- if you ever have a chance to go to a conference on something you are dealing with, GO!!!  This past week I went to an AMAZING Epilepsy Conference in Anaheim and it was amazing.  They had about 50 vendors and experts in all areas ranging from The Brain Recovery Project, to the Chelsea Foundation that provide grants for seizure monitors, to seizure detection/service dogs, to new medications, to several hospitals that were represented.

This is pretty incredible that he is mimicking sounds.  What does the wolf say?        

Then the best part is the speakers. Different speakers every half hour that are experts in their fields speak on the newest technologies and treatments available, and then open up to questions from parents and patients at the end.  There were speakers on Autism and Epilepsy (my sweet nephew deals with both), Ketogenic diet, service animals,  several neurologists and neurosurgeons... My favorite was a talk "New faces in Neurosurgery" introducing the newly hired neurosurgeons at UCLA and Radys- the two hospitals we are affiliated with.  They both spoke, explained their training and the new amazing technologies at their hospitals and then opened it up for questions.  The more I learn and the more time that goes on, the more we are leaning towards needing a hemispherectomy (where they remove or disconnect half of the brain).  With Parker's seizures being so incessant and hard to treat, and the fact that the entire left hemisphere of his brain is ischemic (damaged) tissue anyway, it is looking like more and more of a possibility.  And I am somehow at peace with that.

It was also so encouraging to talk with other parents and families.  One teenage girl I sat next to showed me her seizure monitor wrist watch.  She asked her Dad for permission and then shook her arm several times.  Within half a minute, it texted her Dad that she was having abnormal arm movements.  Then 30 seconds later, it texted her Dad her GPS location.  Absolutely amazing.  She also had a service dog that was trained that when she started having a seizure at night to pull all of her pillows and blankets off her bed and to go get her parents. Wow.

A lot of things are happening.  I had mentioned in my last post about some other medications we want to try.  All medications have side effects, but we are moving into the potentially much worse side effects.  I really did not want to start this particular medication because of the potential permanent side effects, but at this conference I was able to ask lots of questions and get some reassuring answers.  We started it and we will see what happens.

I have hope- and hope is good!!!  We will see what the next few months bring.

Dr. Mathern presenting at the conference.  He is the doctor from UCLA that performed the surgery to remove Parker's skull and vacuum out the blood that saved Parker's life.

Seizure monitor watches

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. :)