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. :)

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.

My son loves whipped cream!!! This is huge since it makes up such a huge part of the keto diet.  He is a rock star and eats whatever I put in front of him.  I sure appreciate his easy going personality.

His meal tonight consisted of 36 g zucchini, 10 g mushroom, and 14 g ground beef cooked in 4.6 g MCT oil with 20 g cream and 4 g olive oil.  For dessert I whipped some cream and added 3 drops of stevia and a drop of lemon oil.  And he loved it.

It's been a particularly stressful couple of weeks with Parker's seizures. Ketogenic diet here we come. Those nutrition and Food Science classes at BYU are sure coming in handy. I can't control everything in my life right now, but I will do what I can. And tonight that meant making freezer meals for the rest of us so I have the time to devote to Parker's new diet.

My sweet kids helped stuff all of the pasta shells.  It helps that those are their favorites.

Parker in Speech therapy.  He now sits well enough we can just sit him in the corner to keep from tipping.  He is saying "mom" fairly consistently now!

 Parker also started preschool last week.  The RBPCP preschool program is AMAZING and we feel so honored and blessed to be included.  They reserve 2 spots in each class for kids with special needs.  There are two teachers and two therapists in the classroom.  I am so amazed at how much they do for Parker and how badly they want him there, even with all of his...well... special needs.  I like that term.

Today marks one year. One year since my son fell from a picnic bench, hit his head on the dirt below and suffered dire consequences.  What a year.  The first 6 months were the hospital stay to bone flap.  The second 6 months have been the absolute roller coaster of seizures.  We have had some incredibly  lows this year, but also some incredibly high highs.  As I reflect on the last year, I don't even know where to begin.

First off, Miracles are REAL. My son's injury has a 70-90% mortality rate.  Most don't survive.  He did. He has overcome the odds so many times.  The miracles this year have added up, toppled one on top of another.  Some are big and tangible, direct answer to earnest prayer.  Others have been in the many tender mercies and blessings our family has benefited from this year.  Some have been in the perfect timing of things, like this week. Coincidences that cannot be dismissed.

So many times when you hear people talk about trials, they say they are grateful for them and they wouldn't have had them any other way.  I'm not there yet. :)  We have had some incredible blessings this year that I wouldn't trade for the world, but it has been tough.  And we are not out of it yet.

This year I have come to know so much more that our Heavenly Father lives, loves us and cares so much about us. He and our Savior love us so much.  They will never give us more than we can handle. Even if it comes close, they buoy us up and enlarge our capacity to function; to love, to learn and to give.  I am so grateful for blessings and for the Spirit that guides us each step of the way.  I have grown so much.  My kids have grown so much. My husband and I have grown so much together. Angels surround us- both seen and unseen.  I have been purely amazed, humbled and so grateful by the outpouring of love, prayers, generosity and abundance of love and help our family has received over this past year.  Images and thoughts are flooding through my mind.  I am grateful for words of comfort, hugs, grandparents and family, generous gifts, dinners, playdates, visits at the hospital, therapists that love not only Parker, but his sweet brother that comes to appts, doctors that do all they can to decipher Parker's individual needs, incredible nurses and hospital staff, sweet kids that are so patient with their parents and little brother, understanding teachers, the many little kids that have been praying for Parker... The list goes on and on and on. Ultimately I am so thankful for my Savior and for my incredible husband that have both walked this path with me this year.  I am so grateful we have had each other.

And I've learned without a doubt that God is so incredibly mindful of us and the details in our lives.

 

Saturday
I got home from UCLA with the good news and an hour later we packed up the car and headed off to our ward (church) campout.  We were in the car on our way when Dr. Hussain called. He told us that he went back through the EEG during the episodes, and even overnight and he found the hypsarrhythmia patterns, in addition to typical seizures.  He has Infantile Spasms.  It was so hard to hear the news that confirmed the infantile spasms (IS) after we had been cleared today, especially right before we were going to face many friends and ward members that had no idea what we had just found out.

He went through all the treatment options and the side effects of each.  Infantile spasms can be devastating, but they can also be cured.  He had us go down immediately on the Vimpat last night.  Already today his seizures have been better.  This morning he only had 4-5 "kicks" instead of 8-10.  This afternoon and evening he had several staring spells that were not followed by kicks at all. Tomorrow morning he will have his last dose of Vimpat.

Through out this whole year, I feel like we have been guided by God's hand.  We have known just enough to get us to the next step- nothing more. We know just enough to make the right decisions.  Looking back, I am so incredibly grateful we did not know the end from the beginning. I don't know if I could have handled knowing everything we were going to go through.  When Parker fell, I knew just enough to take him to the ER.  He had a seizure within a minute of falling and in my mind I knew Seizure=ER.  That seizure saved his life. We have learned SOOOOOO much this year, but it has been line upon line, precept upon precept.  Here a little, there a little.

Even as I look through the last 2 weeks- we've been prepared for this diagnosis and the drastic measures we may need to take.  I have been pouring through a book by Johns Hopkins about the Ketogenic Diet, a diet that is extremely high in fat and low in carb and protein.  The traditional diet is a 4:1 ratio fat:carb+protein.  It works to decrease or even sometimes stop seizures in over 50% that try it.  1 in 2.  I will take those odds.  It is particularly effective when medications fail.  Yep- that fits us, too. We have tried over 5 medications in 6 months, and at least 3 of them actually made the seizures worse.  The diet works because when the body does not have carbs, it burns fat and creates ketones.  Somehow, this causes the brain to stop seizing.  They don't know exactly WHY it works, but it has been proven over and over enough that insurance covers the formula as a viable treatment.  This website does a great job explaining things- way better than I can tonight.

Anyway, this book mentions over and over how effective this diet can be for infantile spasms- and other certain forms of epilepsy.  Week before last I was on an epilepsy facebook page and a mother mentioned that her son had infantile spasms.  I private messaged her and asked if she heard about the diet. She told me about the treatments they are using currently (ACTH) and their next choice (Vigabatrin) but these have serious side effects!.  Keto was their third choice.  I looked up the treatments and one had a video of a baby having infantile spasms.  I watched the video and it looked EXACTLY like Parker's seizures.  I just looked for that website now to link it and I can't find it anywhere, but yet it was there when I needed it.  Hmmmm. So many little tender mercies add up.  I was just reading this website and I did not realize how rare IS are.  Parker did not have the typical EEG pattern that 2/3 of IS have.  Dr. Hussain researches IS and may be the best possible person to diagnose or rule it out. Such a tender mercy that he is the one that read the EEG, he happened to come by our room just as we went back to check if we'd left anything, and Parker just happened to have a seizure while we were standing there talking and he went back to look at the EEG again.  Too many things fell exactly into place for this to be a coincidence.

I was talking to a sweet girl with autism in my ward today at the campout.  I don't remember exactly what we were talking about right that moment, but she said "God is looking out for us. He takes care of us. His hand is in everything."  Little does she know how this was exactly what I needed to hear today.

Friday Morning:
This morning he had a really bad seizure at 6:28 am.  It was one of the worst I have ever seen.  Normally the "kicking" part of the seizure (not counting the staring spell that precedes it) lasts about 2 minutes.  This one lasted 4.  The jerks were hard and they lasted longer.  Normally each jerk lasts only about a second, but these were each about 5 seconds and his right hand would tremble during them.  Then at the end he had probably about 10-15 "after shocks" or small jerks that were about 2 seconds apart.  These aftershocks are pretty new and only follow the severe ones.  Poor baby.

The resident came by around 9am and gathered my log and they said they would look at it before they rounded in about 1 1/2 hours.

The neuro team came by and said everything looked great!  They were not infantile spasms and we should just go up on the meds and continue to prepare for the ketogenic diet in 2 weeks.  They agreed with everything my neuro in San Diego said, Great! It was so validating to have a second opinion that agrees so well with the first.

Friday afternoon:
We are being discharged. All is well!!! Everything they were concerned about is just fine. No hypsarrythmia, no status, no spasms, just several seizures. They are completely on board with everything our neurologist says and is planning. We start the ketogenic diet in 2-3 weeks. I feel really good about it and am so hopeful. Please pray that the diet will be effective. It is amazing just as we have come down just 1ml on one of his meds he is coming alive! He is happy, engaged, smiling, laughing. I so want this diet to work and for him to be able to come down on his seizure meds. I want my baby back!

Friday evening:
Just as I was discharging and leaving, the lady that opens the door to the unit asked me if I was sure I had everything and I went back to my room to check. Dr. Hussain just happened to come by my room  right then and I would have missed him! He is the one that was concerned and called me up to UCLA. We talked and Parker had a seizure while we were standing there. He watched the whole thing, was really concerned and went back to study the EEG.

He just called and they are infantile spasms. These can be devastating and hard to treat, especially when not caught early. The meds he is on currently makes them worse. We are titrating down immediately. Please pray they will improve this weekend as we go off this drug. The treatments are strong, hard and urgent. Please please pray that we will be guided which to try first and which course of action we should go. I feel like we've been led this far. The good thing is, if this can be treated, the neurological development he has lost during these spasms can be caught up. Please pray we are not too late and these treatments will work.

Thursday.  This morning I woke up to this sweet boy cooing up at me.

We came up to UCLA Tuesday for a routine EEG for a study we signed up for when we were here a year ago. They called this morning and were concerned about what they saw on the recent EEG and how different it was from the one 6 months ago right before he started having seizures.  Dr. Hussain called me this morning during therapy, we talked for almost half an hour and he asked if we could come in today... As in immediately.. So we are back at UCLA. They are wondering if everything is being done for him clinically that we can. I really appreciate the second opinion from first rate doctors. So here we are. :)

Originally Dr. Hussain (who read the study EEG) wanted him to come up immediately and be admitted through the emergency room.  I was worried about driving all the way up there and then not being admitted and having the ER cost.  Thankfully it was not an issue.  He emailed me and said to go through the admissions office instead so they knew we were coming and had a room ready for us. Soooooo much better.  We were admitted quickly and in our room within probably 20 minutes of arriving.  The nurses checked us in and then we waited for the EEG techs.

It was very surreal being back at UCLA this weekend of all weekends.  Sunday marks 1 year exactly since Parker fell.  It was so surreal, yet so positive being in the same hospital being surrounded by many of the same people.  I had gone to visit the PICU nurses on Tuesday and that was both hard, but good.  The flood of emotions.  I was surprised through the whole stay this time how positive my memories are- of the smells, hand sanitizer, elevators, restrooms, beeping noises, the nurses, hallways, the cafeteria, food, juice, even my cashier was the same as a year ago.

The EEG tech that came to put on the the leads name is Jimmy.  He is the same tech we had last year.  I don't remember if he put them on (I was a little preoccupied), but I definitely remember he was the one that took them off.  I remember so well the pungent smell of the glue.  It was even more surreal that while I was talking to the intake Dr (resident), the child life specialist (Alicia) from a year ago saw our name on the board and came to see if it was us.  I had visited her on Tuesday so "Parker S" was on her mind.  It was us.  She came to visit and helped with Parker. It was so weird and cool to be at the bedside with two familiar faces.

Anyway, enough nostalgia.  He had two seizures before they got the leads on (and he'd had them every half hour all morning) and then proceeded to have NONE all afternoon and evening.  Silly boy.  But, he did have several 10 second staring spells that I was concerned were seizures. They have him on continuous monitoring with a video camera.  There is a push button that you push whenever you think he might be having a seizure or something you are concerned about.  That marks the EEG and makes it much easier for the neurologists to focus on the times of concern.  So I pushed the button for several of those and they were able to rule those out as seizures.  Great!

Tuesday
I drove up to UCLA for a 6 month routine EEG for a study I signed up for last year when we were in the PICU.  The study is following traumatic brain injury (TBI) and seizures.

I left just before 6 am and only hit LA traffic the last 11 miles. (Those last 11 miles took 45 minutes). I didn't know how bad traffic was going to be so I actually arrived almost an hour early. They got me right in anyway so I didn't have to wait.  I explained what was going on with Parker and just how much has changed in the last 6 months.  Last time I went up was right before Parker's surgery to put the bone flap back in.  Back in February I went up to UCLA Friday, Monday he had the bone flap surgery, we came home Tuesday and Parker was doing GREAT, Thursday he had his first seizure and by the next week he was having 5 a day.  Now he is having anywhere from 9-15 clusters of seizures a day. Each cluster is anywhere from 8-20 "kicks" or seizures.  

I was explaining what they looked like to the neurologist and answering all kinds of questions about his development, medications and tons of other things while they were putting on the EEGs.  The neurologist was concerned and said they sound like they could be "Infantile Spasms," a devastating form of epilepsy because they are really hard to treat and control, and they can really affect neurological development.  My neurologist in San Diego had ruled those out, but UCLA was still concerned.  She said thankfully the neurologist that would be reading the EEG specializes in infantile spasms and should be able to rule them out or confirm them.  Hopefully he doesn't have them, but I have also been reading so much about the ketogenic diet and how effective the diet is for infantile spasms.  Whatever we are doing right now is not working.  Some mornings he seizes every half hour.  Each seizure cluster lasts almost 5 minutes and they are just getting worse, not better.  Either way, his current seizures are hard to treat and either way they are already affecting his development.  

Several weeks ago I went to the hospital for my neurologist appt and I went to visit our old inpatient therapists.  I was so excited to show off his new skills.  They were happy to see us, but I could see it in their eyes that he is not where they expected him to be.  That really affected me and I started to ask questions.  Both to my neurologist and therapist.  Can seizures affect development?  Yes.  They can.  My therapist said they don't often bring it up with parents, but since I asked, she was honest and said yes they can. We are lucky that he has not digressed, but when he is seizing so much, his development takes a back seat to the seizures. Some weeks he does GREAT and makes huge strides, but other times he barely progresses at all.  This is all during the window of time where his brain is still healing from the injury and the most development and improvement is possible.  He is drugged from the medications, his drive is declined....  The more I read and learn about the ketogenic diet, (we are slated to start it in just over 2 weeks) the more hopeful I am to be able to potentially control his seizures and be able to take him off these medications that sedate him, drug him, make him dizzy and just feel yucky. And they don't even work!  Three of the 5 medications we have tried actually make his seizures worse and they improve when we wean him off.  Something is not working and we need a change.  Anyway, back to this week.

I could not have asked for a better EEG scenario.  He had a seizure while they were hooking the electrodes up, which was not recorded, but all of the doctors were in the room and were able to watch how it developed.  Unfortunately the computer was booting up and started recording just as he finished. But, he had another seizure 20 minutes later and then promptly fell asleep and we were able to catch both sleep and a seizure.  Yay!  And we were able to visit the PICU, eat a yummy lunch from the cafeteria (Beef Curry) and not hit any traffic on the way home.  A huge success in my book.  They said I would probably be contacted next week.

Parker only smiles with his right side like this when he his having a seizure.  I am so sad the flash malfunctioned for this picture.  What a sweet little boy we have.

Also- we were approved by our insurance to start home care nursing.  With 3 of my kids in school now, I HAVE to be on my A game when all three get home from school.  I need to be there for them, but Parker needs constant attention and more than I can give him. I am so grateful that we are able to have a nurse come in each afternoon and all day a couple of days so that I can focus on my other kids and some of the things that have been neglected this year.