Philippe's Health Summary

...will I go to Med School and become a neurologist?

No, but I will encourage and support doctors and scientists searching for answers.

And I will keep praying and fighting for a cure!

Through the 8-day EEG we found out that 99% of the time Philippe's brain activity has zero evidence of epilepsy: no "traces", "spikes", or "hints" of seizures. For only a few quick seconds the electrical activity in his brain goes haywire and he has a seizure (it's always right after waking up when the brain is switching from "asleep" to "awake").

His PET scan revealed that there's not 1 specific spot or area, but that his entire brain is not metabolizing sugars properly, in other words it's not functioning as effectively as it should. Some parts are slightly more than others though. 

We already knew he had developmental delays, but now he is offically diagnosed with PDD NOS (it's like Autism's little Sister). 

We are waiting on results from the MRI. 

We are continuing to do DNA (genetic) and metabolic tests, but won't know those results for several months. 

Cleveland Clinic Emotional Journey:

Throughout the whole experience in Cleveland my emotions were dramatically intensified and bipolar. Every tiny little thing made me want to punch someone, hug someone, scream, or cry (or all of the above!). It's SO hard to explain. My new friend Mandalina, who I met last Tuesday with Gabe, after she got home said "You come back so drained in everyway...hard to describe to people unless you've done it! i did it alone and was sooooooo tired i couldnt even think straight when i got home!" 

I agree, every bit. It was tough, I feel depleted, and it is SO hard to explain to the rest of the world, especially to everyone that hasn't experienced having a child with health problems. 

The hardest part was being alone; I always have Marcel to comfort me, help make big and small decisions, listen to all my complaints, and just understand completely how I'm feeling and what I'm thinking without me even saying a word. Of course we texted and talked on the phone a LOT while I was gone. He's such an exceptionally AMAZING and involved father and husband that not having him by my side was TOUGH! This was the first appointment he hasn't been to (other than simple "well child" check-ups) so it was tough on him too.

We've been in and out of hospitals several times, staying anywhere from a few hours to over a week. In Primary's they have a "pediatric neurology" section, but we are usually the only family there with a "seizure kid." 

Until Cleveland, never had we stayed in a section of the hospital devoted 100% to pediatric epilepsy. It was REALLY TOUGH for me! It's really hard to see Philippe have a seizure, but the hardest part is to HEAR it! When his seizures start he makes an awful sound that's like a scream, cry, and a screech all combined, plus it gets cut off a few times while his body seizes. It is the WORST sound in the world! In that one noise you can hear him 'saying' he's scared, confused, in pain, horrified, and NEEDS HELP NOW!!!

Other kids in Cleveland each made their own "seizure sound". They were similar to Philippe's but different, and they're always loud. Even though Philippe only had 1 recorded seizure in the 10 days we were in Cleveland, all day long I heard other kids having seizures, screaming and whaling. The other kids ages ranged from a baby next door to us to a 17-year old across the hall. 

Most days I am pretty tough, and it takes a LOT to wear me down. On day 8, Monday was one of those days that I "just couldn't do it" anymore. A new kid arrived at the hospital. He looked about 7 or 8 years old. They had to put his electrodes on to start his EEG and for 2 hours he was screaming and freaking out like Philippe does when they put his on. For some reason his mom kept his room door open the whole time! Even with our door closed we could still hear him screaming and crying the whole time. For the rest of the day I kept hearing that same little boy along with 2 other boys having a LOT of seizures, making their "seizure sound" followed by setting off the alarm that calls in the nurses, all day long. By the afternoon, even though Philippe was perfectly fine (and even had his EEG electrodes taken off by this time), I was laying on his hospital bed bawling my eyes out for the other children and families around us. In the most excruciatingly painful way possible I understand all that they were going through. I wish I had a way to make all the kids healthy. A way to take away all their suffering and pain. A way to give their families comfort and peace. I am not just fighting for Philippe anymore. I'm fighting for Mandalina and her sons Gabe and Michael, and Joy and Chris and their son Brendan, and Monica's son John, and Sarah and Adam who introduced us to the Cleveland Clinic where they've been taking their son Cole, and every person that has ever had a seizure, and all the families, friends, and neighbors that have been affected by them. 

...will I go to Med School and become a neurologist? No, but I will encourage and support doctors and scientists searching for answers. And I will keep praying and fighting for a cure!

-Candice

*note: anti-convulsants (anti-seizure meds) may suppress seizures, but they are note a cure: if the medication stops the seizures start right back up, if the medication even worked in the first place. 

The Ketogenic diet has worked to *cure* some individuals with seizures, but it's not 100% effective every time or with every person. We did it for 2 years with Philippe; it helped, but didn't stop his seizures. 

Cleveland Clinic: On our way home!

We are heading home!!!

This morning I had just walked in the kitchen when I heard Joy say "hello" then out of nowhere Brendan ran up and gave me the biggest hug! It was awesome!!! I seriously love that kid! 

All week Joy has been asking Philippe to give her "five". He doesn't just hand those out, but today he was giving her "fives" and loving it!

I finished up laundry and packing, got all ready to go, then it was off to the airport! I checked everything except the diaper bag and stroller, we made it through security, then went to sit at our gate to wait :)

All strapped up on his seat in the plane to Charlotte

Ready for her 3rd flight, this time, going home!

With some help from strangers (which I was completely willing to accept this time, instead on automatically saying "no, I'm ok" like I usually do) we got onto the flight. A sweet flight attendant held Belle while I buckled Philippe. The plane had 20 empty seats, so the guy next to us moved to an empty seat. I was not at all offended by that, it gave me more space :) Thankfully, the flight was perfectly boring and we made it to Charlotte!

In Charlotte Belle was sleeping in the stroller so I walked a few steps behind as Philippe run around (close to the stroller, of course!) and entertained everyone to pass the time in our 3-hour layover :)

An hour before the flight I went to the counter and the lady told me the plane was completely full! She said I'd have to sit down and wait. I called Marcel and he started to freak out!

I called our friend that's letting us use the buddy passes and she said there were empty seats, and that we should be fine. The lady at the podium made an announcements for "parties of 2 to come to the podium". A couple came up and I was sitting close enough to hear the lady ask them if they would mind switching seats to the exit row. They agreed. I was hoping she asked them to switch so we could have their seats. A while later she called me up, so I walked over and she handed me our tickets! Two seats together in row 4 :)

We boarded the plane and the guy next to me held Belle while I buckled Philippe. Instead of me thinking "how am I going to do this alone?!" I had the mind set "strangers WILL help me, they don't have a choice". But the guy next to me seemed perfectly happy with holding my beautiful, sweet baby a few times when Philippe needed me for something. 

We made it to salt lake!!! We are SO happy to be home!

Cleveland Clinic: Day 9

Philippe will have to be sedated for the MRI so he couldn't eat or drink anything since last night. This morning the nurse came in at 6am (4am Utah time!) to give Philippe his medicine. The MRI is set for 11am so 6am was as late as we could push it. She asked me "do you think he'll go back to sleep?" I told her "probably not. I think he'll be awake, starving and grumpy all morning" and he was! I played Mickey Mouse Clubhouse for him, gave him lots of toys, took him for our "walk" in the hallway, took him to the playroom, and gave him a shower. There was a lot of biting, screaming, and crying, but we made it through the morning. 

Hiding under the bed

At 10am they told me they were backed up and wanted to move his MRI to the afternoon, which meant Philippe would have to starve all day. I told them "Absolutely not! He's only 3, he HAS to eat!" The head nurse told me they "raised some h_ll! and got them to keep his 11am slot". 

We went to the basement where they have all the big machines and got Philippe in his MRI outfit: awesome blue paper shorts, and a blue gown. 

I went back to the sedation room with him. They used gas this time because he didn't have an IV. Then they threw me out of the room because I didn't want to leave him. They told me they'd call me in an hour when he was in recovery afterwards. 

I went upstairs to rest, eat, and take a shower while I waited. Joy stopped by and said she'd take all my bags to the Ronald McDonald house for me since they had a rental car. 

After his MRI I went to meet Philippe in the recovery room. The anesthesiologist said he had a seizure after the exam (just like after the PET scan). 

I noticed his eye lids were kind of red and purple. They told me they tape down everyone's eyes so they don't dry out and get irritated when they're sedated. That made me sad :(

What made Philippe sad was when he woke up and saw he had the light wrapped around his thumb. He didn't even notice he had a new IV in, but he hates that little light and was trying to pull it and rip it off with his teeth.

I don't know why it bugs him so much. 

After the MRI we were FINALLY done!!! No more appointments, no more EEG, no more IV, no more sedatives, or vitals checks, or being hooked to machines. All we had to do was get discharged ...which for some reason takes hours! The nurse came and gave me all the follow-up instructions, gave me a re-cap of everything that we'd done, and answered all my final questions. Then we sat around waiting... And waiting... And waiting. After 2 hours I asked, "so are we just waiting on his prescriptions?" Then one nurse said "Oh no! We didn't send for his prescriptions!". I asked if I could take them to the pharmacy myself, but she said they couldn't let me leave without them. Then we found out what we had been waiting for was after the nurse had talked to me and answered my questions she forgot to hit the "review" button that sends the file over so we could actually check out of the hospital. Finally at 5 the prescriptions had arrived, the paperwork was done, and we could leave...

So what if we were only going 2 blocks away to the Ronald McDonald house? It was great to be done with the hospital.

We got to the room and while I was feeding Belle Philippe walked over to the door and opened it and walked into the hall. I didn't know he could open that kind of door handle! He doesn't open our bedroom doors at home. Luckily I got him before he got far.

He was hungry so I went to the kitchen where they have "community" snacks on the counter that anyone can have. I grabbed a pastry that looked like it had raisins on it, and gave him a bite really quick because he was freaking out. Right after he'd eaten it I saw it had NUTS, not raisins! He's ALLERGIC! 

I wasn't sure if he'd eaten one or not. Thankfully , Joy and Brendan had walked in the kitchen. I handed Belle to Joy and asked which direction Rite Aid was because I'd heard it was close. She walked over to the window and pointed which direction. I ran upstairs to my room, grabbed my credit card, ran back downstairs, then RAN to Rite Aid 2 blocks away and grabbed some children's Benadryl. The lady at the register wanted to have a conversation!! I'm thinking "lady, did you not see me run in here in flip flops and jeans? Do you see what I'm buying?! I'm in a hurry!" She saw my id and said "oh you're in the Army" Out of breath I said "yes" and handed her my credit card. Then she said "do you like it?" I said "no". Then she proceeds to tell me about some friend/neighbor/relative person who's in the military, but I had grabbed the bag and was already out the door running back! I ran to Philippe and ripped the box open. Of course the outside was wrapped in impossible-to-open plastic! I finally got that off and unscrewed the top, and of course it was sealed with rip-off-proof, puncture-proof foil! UGH!!! Every second my adrenaline, blood pressure, and heart beat are being amplified! I finally got it open and got Philippe to swallow some. I'd been gone from the hospital not even 30 minutes and TWICE I'd needed the "magic button" I press and a nurse magically appears to help me. At this point I was seriously reconsidering having Marcel fly out to help me!

After that I took both kids back up to our room and didn't leave the rest of the night. 

Philippe got a little bored :( But I knew he was totally safe where I could see him. (This time I used the lock at the top of the door so he couldn't open it again).

Cleveland Clinic: Day 8 (Part 2)

The end is near

As soon as we got back into our room one of the techs wheeled in with her cart to adjust Philippe's electrodes. She cut off his head wrap and said "Wow, they all look really bad. I'm going to have to adjust a lot of them, if not all of them. Really, they should probably all come off and be re-done." I was NOT in the mood to hear that. Crystle was gone so I had no one to help me. I didn't have the emotional strength or physical energy, so I just said "Well, we have the MRI tomorrow and they have to come off before that anyway. He probably won't have a seizure tomorrow morning. The EEG was only supposed to be 5 days and it's been 8 days now, so can we just take them off now instead of waiting until tomorrow? We've all just had enough. And they already recorded a seizure, which is all they really need." She called the doctor and the charge nurse. They both came in and looked at his head, which has little sores from the electrodes and all the poking and adjusting. They said it would be ok to stop the EEG and take off all the electrodes. 

Even though I'd been wiping him down all week, Philippe was starting to smell funky. He was so excited to take a shower! He loves baths, but since seizure patients drown if they seize in the bath they don't have a tub. The glue they use for the electrodes is strong stuff! It only comes off with acetone, but since he has little sores all over his head we couldn't use too much. This is what he looks like after his shower:

Brendan is done with his EEG today too so they're checking out of the hospital even though they have some appointments Tuesday and Wednesday (they have different insurance than us; our insurance wants us to stay in the hospital til our appointments are finished). They will be staying at the Ronald McDonald house. It feels lonely and sad to see their empty room across the hall, even though we just met them a few days ago, and they're just 2 blocks from the hospital.  

We've been debating getting Marcel a plane ticket to fly out here just so he can help me fly back home with our kids. We finally decided not to. It would be too expensive if we bought him a ticket ourselves, but since I'm flying standby we might not get on the same flights. And if he flies standby with us, chances aren't great there will be enough empty seats so we might not all end up on the same flights home. Plus he would have to take a couple days off work and we'd be missing out on making money we really need. Bottom line, I'm flying back with my kids alone. I survived getting to Cleveland alone, so I can make it home in one piece with my kiddos :)

Cleveland Clinic: Day 8

Today we had an early breakfast because we have an early appointment with the eye doctor. Optic nerve damage and neurological issues can sometimes be linked, so we have to get Philippe's eyes checked. It's been 2 years, so I guess we're over-due. 

We went to the eye doctor's exam room and the nurse put drops in Philippe's eyes to dilate them. It bugged him a lot :( 

Then she told us to wait in the lobby for 30 minutes and she'll come get us again... 

If you're ever in the mood to be stared at by a lot of people, all you have to do is just hold a sleeping newborn on your shoulder and use your other hand to push a toddler around in a wheel chair. It helps if the toddler is in a hospital gown with his head wrapped in gauze and wires sticking out all connected to a weird plastic box that he carries around like a messenger bag. 

I can tell ya, EVERY person will be looking at you. Works every time. One older lady was chuckling and asked me, "So, what do you do in your spare time?" I told her, "I'm in the Army. That's what I do in my 'spare time' 2 days a month." The lady next to her said "Wow! Well thanks for your service!" Then I said, "The Army is easy! This is the hard stuff: being a mom!"

The nurse came and took us back to the room again and Philippe's eyes were really bothering him. While we were waiting for the eye doctor Philippe curled up on the chair to take a nap :( 

It was so cute and so sad. I wanted to hold him and hug him, but Belle was still asleep on my shoulder, and I can't hold both my kids all the time or my arms would fall off. My shoulder still isn't quite 100% since I dislocated it a few months ago. 

The doctor came in and flashed the light in Philippe's eyes and said "oh, he likes to wiggle." I said, "Yeah, he's 3!" He told me for the exam he uses the metal claws to hold open the eyes to get a good look deep into the back,  so he said we have to see a pediatric ophthalmologist instead, since they're used to little guys that like to wiggle around. I was so bugged!!! We didn't even make this appointment, the nurses just tell us where to go and we just show up. I told him we flew all the way from Utah and our last appointment is tomorrow, could he just look at him since his eyes were already dilated? He said no and told me we'd need to go to the desk and try to make an appointment and hope we get one before we fly back home. This made me even more mad because when you're a patient admitted into the hospital they coordinate all the appointments for you, you don't make your own appointments. 

I went over to the desk to make the appointment, but there were a few people ahead of us that wanted to chat forever. So after 30 minutes (I'm not exaggerating, I timed it because I was that mad!) it was our turn. The girl at the counter had half a brain and said since his eyes were already dilated it'd be dumb to have to leave and come back and dilate his eyes again. So she called the pediatric ophthalmologist who said he would see him. We went to the waiting room, but a new pediatric optholmologist was there for her first day, and their computer system was being updated that day too, so they were really far behind. After sitting there for over an hour, they finally took us back. I held Philippe on my lap while a nurse held Belle a minute. The doctor (who went to the U of U!) had one of those magnifying things on his head that dentists and doctors wear, and he had another magnifying glass in his hand that he held in front of Philippe's eyes and flashed a light into them. He said "His eyes look great. No nerve damage", I was like, "wait a minute, that was it? That was the whole exam?!" He was confused and was like "Yep. That's it". I said "So we don't need to give him anesthesia or use the metal claws or anything like the other doctor said?!" He said, "Nope. Wait, what other doctor?" I told him what happened and he apologized and said the other doctor could have done the exam just as easily he just needed to get a backbone. I WAS FUMING!!! We'd been there for 3 hours! And we'd missed our lunch by now! (And Heaven & Marcel know I get cranky when I don't eat!) I wanted to punch someone, anyone, especially that eye doctor that sent us away! And then punch whoever had made us an appointment with him, instead of a pediatric eye doctor in the first place! 

Cleveland Clinic: Day 7

8/19/12

There's a new Dr. that just moved from Mississippi and started working at the Cleveland Clinic, so he's collaborating with our doctor. He came in at 7am and said we're the only people awake on the whole floor. I said "I don't know why. It's only 5am Utah time, and at home Philippe wakes up at 7. Somebody must have told him about the time change." I thought today he'd definitely sleep in since he had a seizure at midnight and when he has them in the morning he always sleeps for 3-4 hours afterwards, but he was up and running around playing with toys as happy as ever. Until the nurse came in to flush his IV, he always hates that. The end part you screw the syringe into popped off! 

The nurses said she'd never EVER seen or heard of that happening before. She tried to put on a new piece at the end, but it didn't work. So she asked the doctor if we need it and they said he can go without an IV until his MRI on Tuesday. So his hand is free and he's happy he can grab things and play with toys better And since his hand isn't all wrapped up and it can fit into his shirt sleeve I can put on his own clothes now! :)

Today Belle met her Grandma!!! My parents drove all the way from Virginia yesterday and got here at midnight and went right to sleep in the Ronald McDonald house. This morning they came over to hangout with us in the hospital. Belle loves her grandma! My mom is seriously the sweetest grandma! She's so patient, and loves her grand babies :)

Philippe had an awesome time with grandpa today too. He even gave him a kiss, which is really, really special! (I've gotten less than 10 from him his whole life!) He kisses Belle all the time also!

Before we came to Cleveland they told us we'd do a 5-day EEG, then have the weekend off, then we'd have an appointment Tuesday, then go home. Well, the plan changed and they added a couple appointments for Monday and Tuesday, and they said since he has appointments that they'd just keep him hooked up to the machines over the weekend. Then if he has another seizure they'll get it recorded. But all week I was looking forward to going to church. There's a church just a few blocks from the hospital we were going to walk to. I had packed our church clothes and everything! Well Brendan's mom, Joy (across the hall from us) told me she called the Missionaries, so they came to give us the sacrament! It was so great!

Afterwards one of the nurses asked me "who were those guys in suits?" I told her "guys from church". She said "oh... I thought they were professional athletes here to see your son. But they saw the people across the hall too, so I was way confused". I laughed and said, "nope. Not athletes. We're LDS. They are too. They're just guys from church we asked to stop by." That was my best on-the-spot, quick explanation. 

After dinner it was time for my parents to drive back to Virginia and steal my sister with them. (ok, ok it's not really "stealing" since she was their daughter before she turned into my free live-in nanny. But Crystle is my little buddy that I love having around. Plus she's AMAZING with my kids! And the biggest help!) It was sad to only see my parents for a day, and to see Crystle go, even though I'll have her back at my house in a week :)

As terrified as I am to be all alone with my kids again, it's nice to be able to have this time with them all in the same room and we just hangout and play (in between doctor appointments and the nurses popping and out all the time). I LOVE my kids and will do anything for them.

Cleveland Clinic: Day 6

08/18/2012

Philippe had an early morning blood draw for some of the tests Dr. Prihk wants done.

 

Every day, including weekends, the doctor comes to our room to discuss what's going on. Today on her morning rounds she told me she had watched the video and reviewed his brain waves on his EEG from the night before and she said Philippe had a seizure, and that he did indeed have epilepsy. (in my head I was rolling my eyes and shouting "YA THINK?!"). For now, the best course of action is to try a different medication and see how it goes... 

Every day at lease once, if not more, the techs come in to adjusted Philippe's electrodes. He HATES IT!!! And I have the bite marks to prove it!  They fill some electrodes with the special conducting lotion, others they put more stinky glue on with the air hose to hold them down better, and sometimes they have to use Acetone to take it off and re-do it completely. 

Thank goodness Crystle has been here since Tuesday to help me!

Today I met an angel. His name is Brendan. He's 8 years old. His family is from Idaho and they're LDS too. He's in the room across the hall from Philippe. He has the sweetest little spirt! He told me all about how he got Baptized and he sang one of his favorite songs, "A Child's prayer". Of all the times in my life I've heard that song, never was it as beautiful as when Brendan sang it, mistakes and all. I fought back tears as I helped him with the last few words. God puts special children on this earth to remind the rest of us how much He loves us, and to give us some of the most beautiful, memorable moments we'll ever have. I'll never forget meeting Brendan, or his wonderful mother, Joy. 

Joy & Brendan, with my daughter Belle.

2 or 3 times a day Philippe gets to get out of his bed and walk around for 10 minutes carrying "his box" (the small square all the wires for the EEG are plugged into). He has to stay in the Pediatric Epilepsy unit, which is only 1 small hallway with a few patient rooms and the nursing station. 1 of the rooms is a toy room he plays in for a few minutes, then he walks up and down the hall entertaining the nurses a bit, then back to his bed he goes to be hooked up to the EKG and EEG machines again.

Also, today a nurse told me that John, a 15-year old boy across the hall, had a special request that on one of our "walks" Philippe stops by to meet him and say hello. It was fun to chat with him and his mom Monica instead of being cooped up in our room!

John & Philippe

-Candice

Cleveland Clinic: Day 5

08/17/2012

After having a bad day yesterday, today was the best day!! This morning Philippe was on one of his 10 minute breaks playing in the toy room when Princess Belle showed up!!

She must have thought she was Santa Claus because she had a wagon full of toys! I asked her if she would come in our room and meet my daughter Belle. She said 'Of course!' I was so excited I only got a quick picture, but there was a professional photographer that snapped a few shots and said he'll mail them to us. They also gave Philippe and Belle each a toy and a book.

Right after Princess Belle left, Jenny came again to do music therapy. She let Philippe and Belle each play with a maraca, and she sang songs and let Philippe play the piano. My kids LOVE music! :)

After all the morning fun, it was time for our appointment with Dr. Prihk. 

He ordered some genetic and metabolic tests to see if that might be the cause of Philippe's seizures. We won't know those results for 4 months. On our way back from the appointment I took Philippe to see the fish. It's his favorite! 

When we got back to our room we had a child psychologist come and watch Philippe play and ask me a bunch of questions. She said Philippe has PDDNOS, basically, he's not 100% on the autism spectrum, but he has a lot of "quirky things" he does that are characteristics of autism. This really doesn't mean anything new for our family, just that we'll keep on going with physical, occupational, and speech therapy. We will also add a behavioral specialist to the mix of people we see. 

There's a large group of people that volunteer in the Cleveland Clinic called "Family Life". They bring toys, movies, and snacks for the kids that can't leave their rooms, and sometimes they just watch the kids so the parents can take a break and walk around a bit. One guy named Tom likes to stop by and see Philippe. On his visit today I asked him if they have any Mickey Mouse Clubhouse movies Philippe can watch because it's his favorite. He took me to the movie closet and they had 1! When we came back  to Philippe's room Tom gave him an awesome toy that he gets to keep! It was so nice of him! Philippe loves it and he was so happy. Then I played the movie for him and he was SO happy!! He was playing with his new toy, watching the movie and giggling. It was great!

Philippe dozed off and Crystle and I were chatting for a bit. I crawled into the bed to snuggle with Philippe and go to sleep, but I accidentally woke him up. HE HAD A SEIZURE! All week long every time he fell asleep I'd think "maybe he'll have a seizure when he wakes up", and every time he woke in the morning or after naps I'd have the button in hand ready to call the nurses if he seized, but all week, nothing. Now Friday night at midnight he was having a seizure and I was completely unprepared! Crystle and I scrambled around and couldn't find the button. I flipped on the light and threw the blankets off of him and stepped back so the video could get a good visual recording of his seizure, but I still couldn't find the dang l button! Crystle found it and pushed it, which puts a marker in the EEG and the video to mark the seizure, and it simultaneously calls the nurses into our room. 

We watched him seize a few minutes and the nurses asked how long it usually goes. I said "it always lasts 20 minutes". One of the nurses (who watches kids have seizures every day) looked like she was going to be sick and said "there's no way we'll let it go on that long". Then they asked me how often he has them. When I said "one to three times a week" another nurse looked like she was going to cry. Then one of the nurse went and got a medicine and put it in his IV to make the seizure stop. 

Finally I could relax!!! He'd had a seizure and it was recorded. Amen!

Cleveland Clinic: Day 4

Today was one of the worst days. Not because Philippe had a seizure, but because he didn't have a seizure...

On monday I had met the doctor we'll be working with long-term, and he's wonderful! But now he is on vacation, so we're seeing another doctor here who's apparently famous and world-renowned.

She came in our room with 7 other medical personnel (because she never goes anywhere by herself, but 7 extra is a bit excessive) so right off the bat I felt bombarded. Then came some news I was NOT expecting! She said "normal" (which is the word I HATE more than anything in the world!) seizure patients have things called "spikes" or "traces" of seizure activity throughout the day, even when they're not having a seizure in that moment. She told me "Philippe's EEG is boringly normal" (and used that awful word again!). So, after watching my son have seizures for 3 YEARS she tells me that since they haven't seen any seizure activity in 4 days that my son doesn't have epilepsy, and we need to go a different route. She said "he clearly has some developmental delays, so we need to focus on the cause of those, instead of focusing on epilepsy, which he doesn't have".

I was completely caught off-guard and FURIOUS!!! I was thinking "The reason he has developmental days is BECAUSE HE HAS SEIZURES! So why don't we focus on the cause of THAT and we'll have our answer!" But instead I just said we'll wait in the hospital hooked up to machines for as long as we need to be until Philippe has a seizure. and THEN she proceeds to tell me "Well it's just not practical for you to continue to stay in the hospital. He has an appointment on Monday so we'll leave him hooked up for the weekend and if something exciting happens in that time we'll change our course of thinking. But he doesn't have epilepsy so we've got you set you for an appointment with a child psychologist to do autism testing and we're going that route. Do you agree with that?"

I was thinking "SERIOUSLY?!?!! You're famous???! NO I don't agree! And I don't like the way you're talking AT me with your platoon of followers, instead of LISTENING to me! We flew all the way across the country to come here and you're just going to throw us out!" 

But to be the polite girl my mom taught me to be I just said "ok, well we'll just see what happens over the weekend and take it from there."

I took Belle and went to the Ronald McDonald house (where I got a room) and I just cried. There was nothing else I could do because my body and brain didn't have the energy, and everything else was out of my control. I've never felt so overwhelmingly defeated and helpless. The ONE thing I wanted, I NEEDED, out of this whole experience was an answer to why my son has seizures! Not only did I not get that, my son and I were getting denied the chance to even try to find an answer because they're telling me the seizures don't even exist!

After the awful news, a very sweet girl named Jenny came to our room with a guitar, keyboard, and a cart full of instruments for "musical therapy". She was so patient and didn't even get mad when Philippe pulled the guitar strings hard or slammed on the piano keys with his hands and feet. It was the best part of our day. Jenny, you are a very kind soul!