Grid Placement: Day 4... Happy Halloween!

 

Happy Halloween!!

 I must say, I wish we were trick or treating, tonight... Today was both a very hard day, and a great one at the same time.

About 15mins after I published the blog post last night, I looked up and Renn's face had ballooned. AGAIN. Only this time it was bigger... and red... and hot. Renn wasn't doing so well. He was in agony. The Nurses paged the Neurosurgery team. The PICU Fellow came in and examined. He still thought it was a histamine thing, but was confused as to why it was so localized (no swelling on neck, hands, etc). He said he didn't necessarily think it was an emergency, but it was still a good idea to have Neuro come out and take a look at Renn.

The look on his face showed he was obviously freaked out, but he tried his best to stay neutral. However, I tend to trust the nurses in these situations. Nurses were way more concerned.

Renn's face continued to get bigger. And he was in so much pain. They were talking about him so quietly in the hallway. I really got scared.

Eventually, the Neurosurgeon came in and examined Renn. He didn't believe the swelling had anything to do with grid or surgery. So they contacted the Infectious Diseases unit. Due to the fact that Renn's skin got so hot to the touch, the color was so bright red, and his temp was warmer than it should have been given all the Tylenol he'd been on, they decided to draw labs and start a new antibiotic. He may have a skin-type infection. It could be related, or could also not be related to the surgery, at all. But the antibiotic that he began taking as a precaution after surgery wasn't working like it should. They talked about all the risks... I thought I was going to lose my son.

I wept.

Then I prayed...

It was 2:45 in the morning, and Renn was finally allowed to fall asleep. With nothing left, I followed suit.
Morning came, and we had everyone and their mother from every department, in here by 6:30am. Luckily, Renn continued to sleep while I got the "options" speech. It looked as though the swelling had subsided (not increased at all, but only slightly decreased). I was informed we would do some language mapping later today, and then I was left to pray over my kiddo, once again. I informed all my wonderful friends and prayer warriors online about what had happened. I prayed and I felt the prayers of others praying. Then I heard, "Good morning, Mommy!"

I bawled. I bawled buckets. I bawled buckets and buckets.

Don't ever say that prayer doesn't work... This beautiful smile is proof enough!

We had a great morning. He wasn't in a lot of pain, he was happy, bubbly, and bright. Dr. Incredi-Surgeon came to visit us and said that Renn was doing well. He was concerned about last night's episode, of course, but he assured me that it was not related to the grid... He also let me know that unless a miracle happened, we were not going to be having the resection, tomorrow. He wants to see seizures, so the surgery has been pushed back until Tuesday or Wednesday.

We saw lots of fun costumes walking the halls... Then around 2:00pm, Dr. Genius and his Neuro team came in to do what is called "Language Mapping". That is where the neurologists have a patient with a grid placement read, answer questions, or name off images on flash cards so that the team can assess where the patient's language function is located.

<------- Dr. Genius would show the papers with different images on them to Renn, Renn would tell them what he saw. As he read or relayed info, the team would alert the grid inside Renn's brain, and set off signals to make sure that his speech wasn't affected. It seemed boring and uneventful. I was thankful that we were able to get it done, though, because in some cases they aren't able to and it makes resection difficult. Now they will know which areas are not responsible for Renn's speech, so that if they need to be removed to get rid of the seizures, it'll be okay.

 

We got through the process pretty easily... Then Dr. Genius grabbed a pen and paper and did a cute write up for Renn that was about Star Wars, so he could read it. He read through it once and had no issue.

 

Deep breaths... Sorry, this part will haunt me for the rest of my life...

 

He got to the word Luke, and pronounced it in a way I couldn't understand. Thinking he was growing

tired (after all, he had an incredibly late night last night), I said, "He knows that word. It's Luke, baby... Like your best friend and like Luke Sky-"

 

I saw all the Neurologists' eyes. They looked panicked. I looked over at my sweet Jedi, and the muscles on his entire left side of his face had gone limp. His jaw went sideways, and he began to chatter his teeth. He shook violently, and you could see in his eyes that he was scared to death, and he began sobbing while trying to yell for me. I screamed, the female neurologist began to cry, and all the air got sucked out of the room. It may have lasted 15 seconds, it may have lasted a year, but all I know is, they caused him to have a seizure that was NOTHING like he'd ever had. It scared him, and it murdered me. I thought of every plausible excuse for me to not go to prison for hitting each one of those amazing, respectable people in their faces, but it was over.

What happened? Well, to put it lightly, they found the area in Renn's brain that was most responsible for his speech. And it was right frontal lobe... They sent an electrical signal, just like they'd done all along his temporal lobe, directly to it while he spoke. It not only caused a delay in his speech, but it caused him to completely misfire and convulse for a brief moment. Worst thing about it is he was completely aware of it, and it frightened him so much.

 

Here he was, FINALLY feeling better, and this happened. Momma Grizzly was here to stay, and I'm not going to lie... I wasn't a nice person after that. Thank GOD for my sweet hubby who had missed the incident by two seconds... He held me and went and did the talking, while I collected myself.

 

Soon, my comic relief came to my rescue. He had been trick or treating around the hospital, and showed up just in the nick of time. Somehow, one hug from Batman, and I was reminded why we were here. "We need to punch the Epilepsy out, Mommy." Eli once said, to me. He was right.

 

 I went and cuddled with my sleepy Jedi. I felt better. The event will never, EVER leave my mind. I came to the realization, though, of how fortunate we are. Renn's seizures aren't anything like I saw today, and yet there are parents out there who would do ANYTHING to have their kiddo have a seizure that mild. Who was I kidding? Maybe I got hit with a hard dose of reality... Even though our Jedi deals with this everyday, it's not as bad as it could be. So I decided to praise God for what we have.

 

 

Tonight, Renn's swelling is almost nil. These two pictures were taken less
than fifteen hours apart... Try to imagine that Renn's face was easily doubled the size of that picture on the left, late last night. Now he looks much more "normal". 

 

We celebrated Halloween in our own way... It's true that this holiday happens to be our family's absolute favorite. Missing it hurts a bit. No, it hurts a lot. But we're here to punch the Epilepsy out!

 

The hubs and Eli went trick or treating in the city, while Renn and I turned off all the lights in his room, ate pizza, and watched The Nightmare Before Christmas. He wore his Jango Fett helmet every now and again, so I don't think he felt left out. UCSF did reverse trick or treating today, where people in costumes came to the rooms of kiddos like Renn who couldn't leave their beds. The left goodies in a bag placed outside Renn's door. All in all, we had fun!

 

So, may tomorrow be twenty times better, and full of our NORMAL seizures, so that we can get to the next phase. We actually have family driving all the way from southern CA to come and visit us, this weekend... We absolutely cannot wait!

 

Happy Halloween, everyone. Ours happened to be full of tricks... But next year? Nothing but treats and celebrating one YEAR being seizure free!!

 

"Shout for joy, you heavens; rejoice, you earth; burst into song, you mountains! For the LORD comforts his people and will have compassion on his afflicted ones."

Isaiah 49:13

Grid Placement: Day 3

My eyes were still closed as my ears honed in on a voice I hadn't heard in a while... "May I please have some more apple juice? Thank you!"

Nonesense. Go back to sleep, Beth. It was a dream.

"And thank you for letting me watch this show!"

From a dead sleep, I leapt from my bed. I startled the poor nurse half to death. Sure enough, it was

Renn. He was sitting up, drinking apple juice, and watching T.V. I nearly cried. I noticed right away that the swelling had gone down. I could see his right eye, once again. And dare I say it? He smiled at me.

I didn't even notice that it was still pitch-black outside, that the nurse was still our night nurse, or that the PICU was extremely quiet. But once I did, I glanced at the clock. Yeah... It was 5:21am. I had gotten four straight hours of sleep, and Renn had gotten eight. While that was cause for celebration on its own, it was still early. Renn began to fall back to sleep after the juice settled, so I plopped back into my oh-so-lovely vinyl pull-out chair. Less than 30 minutes later, all that apple juice came back to say hello.

Poor Renn. He kept crying and saying that he was sorry. I wanted to scoop him up into my arms and RUN.

A quick bedding change later, and Renn was fast asleep. He slept for an additional four hours... I paced the floor.

We had quite the emotional roller coaster from that point on. I was elated when our Jedi decided he wanted to order pancakes and apples! He slowly ate them, and attempted to play video games for a while. Then the pain started increasing again. Can you imagine trying to chew when part of your skull is free-floating on the top of your head?

ME. EITHER.

When Daddy and E came by, Renn was hitting his threshold. We got his pain meds administered, but since he had been rubbing his eye a bit, our wonderful nurse decided that maybe adorning him with a super cool eye patch would help him feel like there was no need to rub. It didn't last long... He just wanted to sleep.

After being out for no more than 10mins, he woke up nearly screaming. I shot out of my seat and nearly screamed, myself. The right side of his face had blown up nearly THREE TIMES its normal size. He was in agony.

We called in all the doctors and nurses we could. No one knew what had happened... no one knew what to do. Trying not to completely panic, we waited for Neurosurgery to come to an agreement. Eventually, the only thing anyone could think was that Renn had had an allergic reaction to something. They gave him a teeny dose of Benadryl, and he drifted off to sleep.

Hours went by... Swelling went down slightly, but Renn's sheer pain and frustration only grew. He begged me to take him home. He went silent because he didn't want to talk to anyone. He just... Hurt.

Into the evening, I decided to take matters into my own hands. Call me crazy, but my momma taught me that when something was starting to swell, you put ice (or frozen peas) on it. Well, I got a washcloth and submerged it into our bucket of melting ice chips. I had him hold that on his eye for two full hours, only removing it to submerge it again. Now, I'm not saying that what I did helped my kiddo out all on its own. But I am saying that the cool distraction contributed to him not rubbing his swollen eye, at the very least.

When I got him a red popsicle, he actually gave me a BIG smile. I was so happy... It was THE reward I was hoping to get. (And yes, this is his face AFTER the swelling had gone down. Remember, it was roughly three TIMES the size of his regular face, on the right side only)

Due to the massive amounts of medications that came his way, we had ZERO seizures, today. My gut is telling me that the second surgery will be postponed until the beginning of next week. However, I do believe in a God who can make anything happen, so we will continue to pray for seizures that make all this pain and frustration worth it.

We just have to stick to God's promises... Tomorrow is a new day.

"'But I will restore you to health and heal your wounds,'

 declares the LORD" 

 Jeremiah 30:17

Grid Placement: Day 2

The amazing, Jedi Renn continues to be his incredible self. After nearly 24hrs, he was finally able to keep liquids down, and even managed to enjoy half a popsicle, a strawberry "milkshake", and about 4.6 Goldfish crackers. Of course, that was over about a six hour period of time.

Now, I will warn you here, just in case seeing kiddos a little black and blue bother you... His right eye did swell up quite a bit today, and that left our Jedi frustrated beyond belief. When he first woke up, it wasn't that bad.

But as the day progressed, he truly couldn't even open his right eye.

 

 

Renn got a wonderful gift sent to him (thank you, Wright family)! And it was the first time he wanted to sit up, so I was thrilled.

 

He slept most of the day away, only waking periodically to play a video game with Daddy, or to semi-socialize.
 Even when he tried to smile, you couldn't see it. However, the doctors told me to expect major droopiness and weakness on the left side of his body... But Renn not only showed NO sign of that, but he actually proved to have a lot more strength than "usual" this early after surgery.




As we headed out to get a CT scan done, we noticed that his left eye also began to show signs of swelling... I knew to expect this, but I was

incredibly concerned that his frustration level would go through the roof if he couldn't see (I mean, wouldn't yours???).



His CT scan was quick and easy, but the adventure left him in a lot of pain. The swelling around his left eye increased a ton...







I was encouraged when he stayed completely awake while watching a couple movies with me during the rest of the evening. The longest he'd stayed awake until that point was about 7 minutes. He kept asking me to cuddle with him... Who would deny such a request?!






I did step away, at one point, and I got this picture of him watching one of the movies... It may not look like it, but his left eye IS open. Poor, poor baby.














I do have GREAT news to report!! Renn had one, GLORIOUS seizure, this afternoon! So, that means that his brain and body have definitely not gone dormant after the surgery, yesterday. Not only that, but one of the Neurologists said she was pretty convinced it was stemming from the lower Temporal lobe!! So your prayers are working. Please, continue to send them our way!

As our Jedi got sleepier and sleepier, he asked if I would lay next to him and go to sleep. It broke my
heart that he drifted off before I could lie down. However, just watching him now, he seems at peace... Like he's getting the best rest possible. And that, alone, is such an answer to prayer.

"So I say to you: Ask and it will be given to you; seek and you will find; knock and the door will be opened to you."

Luke 11:9

 

Grid Placement: Day 1

I didn't sleep last night. Come to think of it, I haven't slept much since my mom passed away, in June. Last night was especially hard because I laid awake staring at my first born. I watched his face twitch in his sleep, the same way it did when he was laying in my arms, super tiny and new, nearly seven years ago. I couldn't help but think what on earth are you doing to your baby?! Before I knew it, it was 4:30am. Time to get the road on the show (as Mom would always say :) ).

Renn woke up in such a great mood. Almost immediately, he shouted, "I'm ready! Let's get rid of these seizures!"

Tears, people. And just when I thought we had none left.

As we got in the car, it was absolutely freezing. I should have figured, because the wind was immensely powerful as it howled so hauntingly, last night. We happen to be a family that revels in the cold, so I whispered a quick "Thank you" to God, as I sat in my seat.
My mind was filled with so many things. The memories of yesterday, where we just had FUN in San Francisco for the first time ever. Seeing my kiddos marvel at the sharks above their heads in the Aquarium of the Bay, play with all the crazy do-dads in the Exploratorium and have a seagull swoop down, steal E's corndog stick, and swallow it whole, made for a thrilling Sunday. But my mind was also stabbing my heart with the many "what-ifs". And those, ladies and gentlemen, are NOT what you need running through your thoughts.

We got to UCSF right on time (6am) and things went fast. Before we knew it, he was on a bed, in a gown, and we were being interviewed by anesthesia and all the attending staff. 7:30am was drawing near and Eli, God bless him, was doing the best he could... but let's be honest. He's four. Up before dawn. In a hospital. Unsure of what in the world is happening.
It was a might bit stressful.

Then, it was time for Renn to go. Dressed in my white "bunny suit" and blue hair cap, I walked our brave Jedi into his operating room. He turned around to say goodbye to Daddy and Eli (who were
both having a difficult time obeying the DO NOT ENTER UNLESS AUTHORIZED signs), and we heard their voices fade behind the thick, metal door slamming shut.

At that moment, Renn's little hand tensed in mine. He
hesitated when he saw all the stark, sterile white. Once I got him onto his bed, the nurses talked about the "giggle gas" and how it smelled like the grape flavor he chose, earlier in the morning. His eyes widened. He didn't like the mask on his face, but after a few breaths, he began to hold still. His eyes met mine and he cried, "Momma...".

I was broken, he was fast asleep.

God, please. Please let this be the answer you have been trying to give our son...

For the next NINE hours, we heard from the

nurses in the OR off and on. It was painful. We just wanted to see him. Sure, we kept hearing great things, but it didn't matter.

Finally, Dr. Incredi-Surgeon walked in the door. He looked so tired... He said (with a giant smile), "All is good!" We talked about what to expect- the swelling, weakness on the left side, the recovery, He let me know about the loose bone flap, and how it's basically free floating. It has a hinge on it for swelling of his brain (so that the expansion will not cause Renn any issue), instead of being screwed or stapled together. However, Renn "should be back to normal ASAP".

Makes no sense to me, either.

We got to walk into Renn's beautiful room, an hour later. Our angel JEDI was laying so peacefully, and sound asleep. When he did finally open his eyes, he smirked, and went back to sleep. Of course he would. It was a see?-told-ya-I'd-be-OK kind of smirk. I wanted to smother his face with kisses.

Daddy and E left, with great hesitation, and I spoke with all the same staff who have become more like family to us, than JUST nurses and doctors. Renn experienced some nausea after eating two ice chips over the course of fifteen minutes, so we opted to let him sleep lots more. His determination to be "normal" right away was not lost on me, however. I am married to a VERY determined man, and I myself have issues with patience and relying on others for help. Wait, that's not news to you?  ;)


He is sleeping peacefully, and is showing signs of major swelling already. I'm unsure how to handle it, but I believe with all my heart that this is it. Why? Because a cute Jedi told me so.

Please pray for seizures, now. We need as many as we can get, so we can get the process started. If we get a lot of them, we will face the 2nd surgery on Friday.

Thanks, friends. Having you there to "listen" and pray sure is a giant blessing for us. God bless you all.

Be still, and know that I am God...

Psalm 46:10

Kate's Story: Part 2

Okay, friends... Here is part two of Kate's story, as told by Mom, Michelle. To go back and read part one, click HERE.

**************************

Joe and I knew that we had to re-consider the surgical option.  The good news is that we didn’t have to re-do all of the testing.  But the bad news was that the original neurosurgeon had left Children’s Hospital.  It took several appointments and conversations with Kate’s Epileptologist and the new neurosurgeon before we made the decision to go forward.  Based on her previous testing, we knew the seizures appeared to be localized in the right temporal lobe but the specific focal area was not found.  Therefore, a move invasive type of surgery would be required.  It’s called a craniotomy with subdural grid placement and it’s done in two surgeries.  In the first surgery, the skull is opened and sheets of electrodes are placed directly on the brain.  It’s an EEG on the inside versus the outside of the head and can hone in on the specific initiation point of a seizure.  Things are closed up and the next phase is waiting for multiple seizures to be captured.  It’s important to get more than one seizure so that the location can be verified and validated.  Once the seizures are captured and analyzed, an area for resection is identified and removed in a second surgery. 

That’s right, folks—we’re talking about removing the area of the brain where the seizures are occurring.  It took nearly three years and trying over 10 different AEDs to convince us that surgery was the best way forward.  However, we wouldn’t have considered surgery if total or at least significant seizure control wasn’t possible.  We also wouldn’t have pursued surgery if there was significant risk to her core brain functions.  Two big factors working in Kate’s favor were the location of the seizures and her age.  Kate is right-handed.  In the vast majority of right-handed people, the left side of the brain is the dominant side which controls important things like speech, motor functions and memory.  Resection in the left temporal lobe would have been much more of a risk for Kate.  And second, Kate’s age was another benefit.  At 5, her brain was still growing and developing.  Because of all that we’ve gone through and the potential for success, we set a date for the first surgery on July 11.  We tried to plan it during summer break so there would be a good amount of time afterwards for rest and recovery. 

As the surgery date got closer, we tried to make the most of our time and preparing for what was expected to be a long hospital stay.  Since Kate was on multiple AEDs and the seizures didn’t follow a predictable pattern, the doctors started to wean her off of some of her medications before surgery.  Once the grids are in place, the faster they can capture seizure data the better.  Because the skull plate isn’t completely sealed while the grids are on, there’s a great risk of brain fluid leaking or developing an infection.  Barring any complications, the neurosurgeon told us that he wouldn’t keep the grids in place for longer than 3 weeks in order to capture seizures.  While my greatest fear was encountering some complication that would cause the unthinkable, I was also scared of the possibility of Kate being hooked up for 3 weeks and not having any seizures in the hospital. 

As I mentioned before, Kate was “blissfully unaware” of her condition but would sometimes talk about having headaches.  In speaking with a neuropsychologist about how to prepare Kate for surgery, he recommended that we keep the information as simple as possible and talk about fixing the headaches.  She was so incredibly brave as we went to the hospital and started the patient intake process.  I, on the other hand, was a complete disaster on the inside and could hardly keep it together as waited to be called into the pre-op area.  I was determined not to let her see me cry or show my fear, but how can a parent stay composed when you know that there’s so much at stake? 

The first surgery was incredibly long—nearly 8 hours from start to finish.  Fortunately, my sisters arrived from West Virginia to help out and my mother-in-law was taking care of Sam. As expected, Kate looked pretty rough after surgery and spent the first night in the PICU.  The next morning she was moved to the neuroscience unit for monitoring. Grid patients have the good fortune (in my opinion) of having a full-time nurse in their room 24/7.  It’s probably incredibly boring for the nurses, but it’s great for the parents.  We had an extra pair of eyes on Kate at all times (which allowed us to sleep) and ensured that she kept her hands away from her head.  We were very fortunate to have excellent nurses throughout our entire time. 

 

As we expected, Kate went several days without any seizure activity.  To be honest, she was doing better than I expected in terms of tolerating the pain and being limited in moving around.  It helped to have a lot of people around her most of the day to keep her occupied, and the ChildLife services helped a lot.  As the doctors continued to wean her medications, she finally started to have some electrographic seizures.  These seizures are normally only detected by EEGs and aren’t physically noticeable.  Unfortunately, they didn’t really count as “real” seizures.  But something was starting and we were getting incredibly anxious. Finally, 6 days after surgery, the real deal started.  Over the course of 2 days, she had 6 seizures.  It felt wrong to be happy that she had the seizures, but we felt so relieved. 

By some good fortune, our Epileptologist was serving as the Attending Neurologist while Kate was in the hospital.  She was responsible for reading the EEGs and reporting on the location of the seizures.  She broke the news that while the seizures were starting in the right temporal lobe, there were also indications of spiking activity in the Peri-Orbital region of the brain.  This new information completely threw us for a loop.  We had expected that everything would be limited to just one area of the brain.  Now we might be faced with a new surgery to add additional grids to the Peri-Orbital area and then waiting for more seizures to ensure we remove all of the appropriate areas.  But what functions would be affected by resecting areas of the Peri-Orbital region?  I was in agony all over again.  To complicate matters even further, Kate’s head wrapping seemed to show a lot of new leaking.  While the neurosurgery team seemed to think this was from the bonding element used to keep the skull plate closed, leaking isn’t a good thing.  We needed to make critical decisions fast.

After reviewing all of the current seizure information and all of Kate’s previous diagnostic testing with the heads of the Neurology and Epilepsy Departments, our Epileptologist and Neurosurgeon met with Joe and me to provide a recommendation.  It was their opinion that the seizures were starting in an area in the right temporal lobe and then spreading quickly to the peri-orbital region.  This would explain the spiking found on the EEG.  There was no need to resect any part of the peri-orbital region.  Upon further review, there appeared to be a lot of residual activity remaining in the right temporal lobe after the seizures started.  Because of this, they recommended a complete removal of the right temporal lobe.  Not just small section of the temporal lobe as we originally believed – a full temporal lobectomy. 

Once again, we were floored.  It was good to hear that additional sections of the brain were not going to be impacted, but now we’re talking about removal of an entire part of the brain.  This was not how I thought things were going to play out. And again, we didn’t have the luxury of time on our side.  The second surgery had to take place the next day (Friday, July 19) or we had to wait until Monday.  We were fortunate that both doctors spent an extraordinary amount of time with us to review every risk and discuss every possible concern we had. It wasn’t easy, but we decided to do the full temporal lobectomy.  Later that night, I was full of nerves and unease.  I texted Bethany with news of what was happening and provided more details than she was prepared for.  Bless her for listening because I think “talking” it over helped to settle my mind on our decision. 

(Ahem… It is I, Bethany, interrupting for a second to say that at this moment when she was texting me, I began to look at flight info to see if there was any way possible that I could come and hold Michelle’s hand. So, she was NOT being a bother, and I was prepared to move mountains to be with her… Okay, continue!!)

The second surgery was almost as long as the first, but went just as planned.  Of course, everyone was waiting for her to move, talk and recognize us.  When she woke up and was alert, Joe began showing her pictures on his phone.  She was able to recognize and say the name of Sam, our dog and her cousin.  That was a huge sigh of relief.  Following surgery, she slept a lot and it took a while for her to start eating regularly.  It’s standard protocol after this surgery for Epilepsy patients to return as soon as possible to their regular AEDs for up to a year.  Kate had been on Dilantin again during surgery because it’s one of the few AEDs that come in IV form.  During the transition back to her regular AEDs, she had two seizures in the hospital.  At this point, we were unsure if the seizures were due to the surgery or because of the changes made in her medications.  Either way, we were so disappointed and scared that this meant that the surgery didn’t work.  Ultimately, she would have two more seizures soon after leaving the hospital.  In looking back, it now appears that the seizures were caused by the weaning too quickly off one of her medications and adding another back too quickly. 

 

Following surgery, Kate did have some difficulty getting back on her feet. She needed a lot of support to move around and physical therapy was started.  Upon our release on July 25, a walker was ordered for her.  By the time we received it, she was already getting around just fine.  We did start regular occupational and physical therapy appointments after her release and I believe they have been really helpful.  Her language and talking also took a little time to return to normal.  But in the weeks following surgery, she made noticeable improvement in expressive language and understanding.  And for now, there does not appear to be any negative impact to her memory.  The incision area was 27 inches long and took the shape of a backwards question mark.  This was the only area that was shaved and her hair is growing back quickly.  We were also very fortunate that no infections developed while she was in the hospital or afterwards.  And, most incredibly, Kate was ready for the first day of school.  She’s still in the special education class and has some difficulty with her behavior, but there’s gradual improvement every week.

It’s now been 12 weeks since her last seizure and we haven’t detected any seizure activity.  No strange eye movements, jerking, or twitches that would normally be the beginning of a seizure. Even still, I watch her like a hawk because after nearly three years I can’t let my guard down.  If Kate remains seizure free for 6 months, we may begin weaning her off the AEDs.  Until then, we’ll celebrate every seizure free day as a victory and continue to pray for families affected by Epilepsy. 

Thank you, Bethany, for letting me share Kate’s story!

*********************************

Thank YOU, my sweet friend!! We are so very thankful that Kate is thriving!! Thank you for giving us insight into your journey... We will commit to pray for Kate (well, we'll pray even MORE!), and will check back in at that exciting 6 month mark!!

Kate's Story: Part 1

Today, we have a special guest! I wanted to give insight for all our friends, family, and followers into the journey of another family whom we have thankfully "met" during Renn's journey.

Michelle is the mother of this beautiful little girl-

 

This is Kate. And in July of this year, she underwent the exact same surgeries that Renn will endure, next week. I wanted Michelle to share Kate's story, and how they came to the decision to go through with surgery, and how it has changed their lives. Just like ours, their journey has been long and tedious. So naturally, I will begin with part one, and tomorrow I will post part two.

 

Thanks, Michelle! Share away!!

 

*************************

Earlier this year, I stumbled on a Pinterest pin that connected me to Bethany and to this blog. After years of struggling with the challenges associated with my daughter’s seizures, I was equally happy and sad to find another mother facing a similar battle with Epilepsy.  Kate and Renn are the same age, both have Complex Partial seizures focused in the right temporal lobe and both were on the path to brain surgery.  We may be separated by nearly 3,000 miles, but Bethany has become a treasured friend and inspires me to stay strong and love more despite the difficulties we face on this journey. I’m honored to share Kate’s story because she, too, inspires me with her strength and resilience every day.

Three years ago, we were the typical family of four living in the suburbs of Washington, DC.  Life was full of the normal craziness that comes with trying to find some amount of balance in the work-life equation. Then it all changed.  The first seizure came three days after Kate’s 3^rd birthday.  She had been sick the week before, and was still home recovering when she appeared to be choking and then lost consciousness.  My husband, Joe, was with her and he was terrified.  Like me, he had never witnessed someone having a seizure and didn’t realize what was happening. Thinking that she might be suffering from dehydration, Kate was hospitalized and had another seizure early the next morning while I was with her.  This time a nurse was there and recognized that was happening. Within hours, Kate was transferred to a larger regional hospital for more specialized care.  

Kate was started on Dilantin (the first antiepileptic drug or AED) but continued to have breakthrough seizures. During those two weeks in the hospital, Kate endured a CT scan, 2 MRIs, multiple EEGs, a spinal tap, and daily blood tests in an attempt to find some answer to why these seizures started in a kid who didn’t have previous medical issues and had been meeting all of her developmental milestones on-time.  When the first drug was unable to control the seizures, Kate was moved to the Pediatric ICU and Phenobarbital (#2) was added.  This medication put her into a drug-induced coma for two days in order to calm down the seizures.  In the PICU a pediatric neurologist explained that since two AEDs failed to control her seizures and because there was no clear understanding of why they started, there was a low probability that we would find an AED that would stop the seizures.  This neurologist was also the first one to mention the possibility of brain surgery as an option for seizure control.  This would also be the first time, Joe and I wept together over Kate’s condition.  Unfortunately, it wouldn’t be the last.

The most troubling characteristic of Kate's seizures was that her respiratory rate would drop, she'd turn blue and "destat." Unfortunately this would become a common trait of Kate's seizure presentation along with stiffness, jerking movements, and drooling. The seizures would also predominately take place during sleep.  Because she couldn’t be released until they found a combination of AEDs that could provide a comfortable level of control, Clonazepam (#3) was added to her AED regimen.  We didn’t care what it took.  We just wanted Kate out of the hospital.  The clonazepam finally calmed things down, so she was released with oxygen tanks and a rescue medication called Diastat (#4) to be administered when seizures lasted longer than 5 minutes.  To be honest, we still naively hoped that the seizures would stop as mysteriously as they started.

The first year of Kate’s diagnosis of Complex Partial Seizures was challenging.  The medications decreased the occurrence of the seizures from daily to (at times) weekly.  Although they would always show up without warning, the majority of seizures still occurred during sleep. We were so fearful of Sudden UnexplainedDeath in Epilepsy (SUDEP) that Joe or I slept with Kate every night and stayed nearby during naptime.  New AEDs were added and subtracted to the mix and my sweet girl was ravaged by both the torture of the seizures and the side effects of the medications.  Dilantin and Clonazepam made her act like a drunk. Keppra (#5) offered no improvement.  Depakote (#6) gave her an insatiable appetite and she gained 25 lbs.  Topamax (#7) reduced her language ability and cognitive development.  Overall, the AEDs made her dizzy, unfocused, and confused.  While her peers were learning new skills, Kate was falling behind, developmentally.  Despite the serious side effects, Kate was “blissfully unaware” of her condition.  Perhaps due to a combination of her age, reduced cognitive awareness and because most seizures happened during sleep.

Because the AEDs were not proving effective, our neurologist referred us to an Epileptologist at Children’s National Medical Center in Washington, DC.  This doctor not only specialized in treating Epilepsy, but also managed surgical candidates.  We still weren’t sold on the idea of brain surgery, but we knew Kate needed new options and even contemplated the Ketogenic Diet. Considering the type and characteristics of Kate’s seizures, the specialist thought that Kate may be a good candidate for surgery.  The surgical evaluation process is designed to rule out certain factors while collecting useful data on seizure activity.  We began with a 5-day Video EEG, a new MRI, and genetic testing.  Unfortunately, these studies take a very long time to schedule and it takes even longer to receive results.  By this time, nearly a year had passed and Kate’s seizures started happening while Kate was at daycare.  First it was during naptime and then it happened while playing on the playground.  We were fortunate that the daycare had been so supportive of Kate’s needs, but these changes frightened us.  It was time to step things up, so I took a leave of absence from work to care for Kate and aggressively pursue further testing for surgery. 

Up to this point, every MRI failed to show any signs that might be linked to seizure activity – no lesions, tumors, cysts, or abnormal tissue.  If it did, the surgeon would know exactly where to go and what to remove.  In cases like Kate and Renn’s, it’s like searching for a needle in a haystack.  The objective is to eliminate a majority of the haystack during your search.  During Kate’s second VEEG, multiple seizures were captured and, for the first time, the seizures appeared to be occurring in the right temporal lobe.  The location was further confirmed by a PET scan.  We were finally hopeful that we were on the right track.    

Because the side effects of Depakote and Topamax were so detrimental to Kate’s development, they were removed and two new drugs were added:  Trileptal (#8) and Lamictal (#9).  It took a while to tweak the dosages for Trileptal because it would make her fall asleep within 15 minutes of taking it.  The lamictal doses had to be slowly raised to ensure a deadly skin rash, called Steven Johnson’s Syndrome, didn’t occur.  While the new drugs appeared to be working well to control Kate’s seizures, Kate’s emotional behavior and developmental delays were still troubling.  After taking her out of the daycare she loved, I tried to find a pre-school program to keep her socially active and provide some learning activities.  Many pre-schools in our community would not accept Kate due to her medical condition, or wouldn’t agree to administer Diastat if a seizure occurred.  Fortunately, she qualified for a county preschool program for children with developmental delays and it was a great fit for Kate. 

In the fall of 2011, we met with a neurosurgeon for the first time.  She agreed that all of the testing indicated that Kate would be a candidate for Epilepsy surgery.  The neurosurgeon was really good and gave us a sense of confidence that we needed.  Still, we did more research, spoke to other parents of children with seizure disorders who had undergone surgery and also went to Johns Hopkins for a second opinion.  It wasn’t easy, but we made the decision to go for it and the surgery was scheduled for early December.  Then life threw another curveball.  My father-in-law was diagnosed with cancer and his health was deteriorating fast. We decided to put surgery on hold until things calmed down. Unfortunately, he died on December 1.  It was such an overwhelming time, especially for my husband and his family in New York. 

In the midst of everything, we realized that Kate was having fewer seizures.  Between November and January, she had just two seizures.  This was the longest stretch she had ever gone without having seizures.  Maybe the drugs were starting to control things better?  It was even suggested that maybe she was “growing out” of the seizures.  Something that we had hoped and prayed to happened. Regardless of why, it was a much needed development and we happily put the surgery on an indefinite hold.

The seizures came back when Kate started kindergarten and I started back to work.  (Perfect timing, right?)  This time they didn’t occur just during sleep.  They came at any time, day or night.  We were incredibly disappointed.  Because of this re-emergence, a new drug (Onfi #10) was added to replace Clonazepam.  It was no surprise that kindergarten was difficult for Kate.  Because of her developmental delays, she was placed in a non-categorical special education class.  The class worked much better for her because there were only 7 kids in the class, but she continued to struggle with basic things like writing her name and drawing.  Intellectually and emotionally, she was still 3-years old. 

Joe and I knew that we had to re-consider the surgical option...

 

**********************

Stay tuned for Part 2, tomorrow!

An Ally to the Republic... Reading For Renn

Along Renn's journey through Epilepsy, we have met and "met" many friends. Some have Epilepsy, or have a family member with Epilepsy, but many do not. The thing we have learned is that the world- nay, the galaxy- is filled with incredible, loving, and wonderful people.

Last week, I received an email from a blog that I subscribe to and read religiously. Its author is someone I regard highly and draw great inspiration from, as well as encouragement, when it comes to my writing. He reviews kidlit of all shapes and sizes with honest opinions and descriptions that I find highly accurate. Oh yeah, he's also ELEVEN.

Erik, of This Kid Reviews Books, is a genuine, kind-hearted soul. And, his parents? They get Parents of the CENTURY award! They have raised a son who is not only super smart, but he wants to help others. Renn has benefited greatly from the videos Erik has made with his Star Wars Legos... He knows the ways of the Force, I tell ya. And we are lucky to "know" him. :)

The reason I am writing about him today, is because Erik has stepped up to the plate and is challenging both himself AND his followers to help Renn. He has created READING FOR RENN, where he is asking friends, family, and businesses to sponsor him for every Accelerated Reader point he gets  (the AR program is a program that many schools run where they read several books, take tests about those books, and then earn points!). Now, he is a sixth grader... And sixth graders at his school have a goal to earn 60 points for the school year. However, Erik says, "My personal goal for this year is to get 1505 points (just enough to beat the district record I set last year ). For Reading For Renn, my goal is to get 150 AR points for the MONTH OF OCTOBER."

 

Incredible, right? What a blessing he is- and a SMART one, too!

He is already rocking the challenge! He has earned 34 points, and is NOT slowing down.

 

So, Renn would like to give Erik an award... It's the official Purple Lightsaber Award! This award is given to those who advocate for Epilepsy- those who show their kindness, and who stand up for those who can't.
Erik- for your precious gifts of love, for your willingness to help others, and for your ability to use your talents to spread the word about Epilepsy, we would love for you to accept our small (albeit kind of silly and fun!) award. You, kiddo, are a true hero! Thank you!!!
 

God bless you, Erik! You have a friend in Renn (and the rest of us, too!) for life! Good luck on your challenge. May the Force be with you, always!

 

And may the rest of us be more like this eleven year old kiddo and be inspired to help complete strangers, in their time of need.

 

**************

 

For anyone wanting to sponsor Erik in his Reading for Renn adventure, please click HERE.