3.31.2014

a diagnosis...

we're in some new territory and honestly, we're still processing everything because of some remaining unknowns. back story...back around thanksgiving, canon had a weird moment that we noticed, but we didn't think much of it. in the midst of playing (and disobeying), he stopped and stared off in a trance. we started talking to him about his choice, but he was just staring at me and not responding to anything i was saying to him or asking him. i chalked it up to stubborn disobedience and eventually (about 20 seconds), he started responding and we went about our business. 

on december 29th, we were at lane's parents for christmas. canon was playing with lane, uncle pickle and pops and was acting completely normal. he had made up a game for the big boys and he was the referee. after about 15 minutes, he ran into the room and then just stopped and stared straight ahead. i kept trying to get him to say something, but it was evident he was not aware of anything going on. after about 30 seconds, he snapped out of it, became agitated and immediately wanted to go to sleep. he slept it off for about 30 minutes and then slowly became himself again over the next hour. it scared us all and we instantly thought back to thanksgiving. we knew we needed to get him checked out once home.

amidst the crazy january we had, we never made it to the doctor. at the end of the month, we went to muskogee for a week. on saturday, february 1st, we were in tulsa with my mom shopping. we stopped to eat lunch and everything was fine. when they brought our food out, i was busy prepping everyone's meal when my mom brought my attention to canon, he was staring off again. this time it probably lasted about 20 seconds that we can tell. when he snapped out of his trance, he became agitated and wanted to nap. so he skipped his meal and slept in the booth for 30 minutes. he's weak and tired when he wakes up, but over the next hour, he perks back up. my mom made me promise to take him as soon as we got back. at this point, there was no denying anything wasn't wrong. it was like clockwork that this was happening. 

canon got sick over the week in muskogee and by the following monday (2/10), we had an appointment for him with our nurse practitioner. he had an ear infection (first one since he was 2). as she was about to leave and asked if we had any questions, i said let me run something by you and told her about the past 2 months. she said that it definitely sounded like silent seizures. she made an appointment for an EEG for that thursday (2/13). i left feeling relieved that it was finally out there and we were doing something about it. i also experienced crazy thoughts/emotions leading up to it (probably due to the obsessive googling :)), but god's peace always reigned me back in. 

the morning of the test he was supposed to be sleep deprived so he stayed up late the night before and we woke up ridiculously early. he kept calling our outing a mommy/canon date! before we left the house, we prayed for canon together as a family. it was a sweet moment.
after struggling to find the building, we made it. he was the first patient of the day and they took him right back. i worried about this busy body boy sitting still long enough to put on all of the electrodes and then for the test itself, but he did great. it took about 20 minutes to get all the electrodes on. he wanted me to take a picture of him to show ledger! he also chose to bring this little helicopter the he NEVER plays with. you would've thought it was his most prized possession on earth! once the test started, he kept having to be reminded from the technician to lay still and close his eyes like he was going to take a nap. i was thinking "good luck" the whole time. to my surprise, after about 15 minutes, he passed out and they continued to test him for another 20 minutes. i was really thankful they were able to get what they needed for a complete look at his sweet brain! as we walked out of the building, canon got excited and exclaimed, "this place is awesome! i want to do that again!!"
we had an appointment on the following tuesday (2/18) with our pediatrician to discuss the results of the EEG. i dropped the little boys off with our friend, sarah, and we met lane at the doctor. canon was so excited to show his daddy where he goes to the doctor. dr. wheeler came in told us right away that he definitely is having seizures and that they were the absence (petit mal) kind. he gave us all the information that he could about the actual diagnosis, but told us that the pediatric neurologist wanted to see us in springfield to discuss treatment, which he could get us in in about 2 weeks vs the 6 weeks that they were booking at the time. he actually relieved so much fear in that meeting because he was so calm about it and went on to tell us that these kids can lead normal lives when the seizures are under control. most people outgrow these seizures. just knowing facts about the disorder calmed us tremendously. as we were leaving, the nurse brought in our appointment card and we were shocked to see that it was for 2 days away! she said there had just been a cancellation right before she called. totally a god thing!
on thursday (20th), we woke up early once again and got everyone out the door by 7 so we could drive to springfield. we dropped the little boys off with our neighbor and friend, cailee. we also picked up our friend, taylor. he was flying out of springfield that morning. the timing on that was perfect! after getting lost around the airport, we said goodbye to taylor and made our way to the appointment. about 5 minutes away, canon, out of nowhere, threw up a couple of times in his carseat and ALL over himself. of course, we didn't have an extra, complete outfit for a 5 year old! lane called the office and filled them in and told them we'd be there as as we could. they were great! i cleaned him up as best as i could and googled the closest target. i went in and bought shoes, pants, a shirt, lavender baby lotion and a package of wipes! never a dull moment :)

we instantly fell in love with the office staff and were taken right back to a room. the doctor came in within a few minutes. after introductions, he sat down and said that canon's EEG was one of the most impressive ones (not in a good way) that he had seen in his 23 years of practice. canon had had 30-40 seizures in his 20 minutes of testing. i instantly felt like a loser. how could i not know that my kid was having seizures? he immediately calmed our fears by saying not to beat ourselves up since there's no way to know how/when it started. most of these seizures that he's having are only 2 or 3 seconds long. they don't know what causes them in most cases. and even more baffling is canon's "long" 20-30 second ones that we do notice every 30 days or so. those were the only indication for us that anything was wrong.

he went over our treatment options. there were 3 meds that he said we could try. the first 2 that he went over had many, horrific side effects. the third medicine sounded safest. the biggest side effect was an upset tummy with it. the only downside to this med was that it did not protect against grand mal seizures. he went on to tell us that kids with the absence seizures had a 35% chance of developing grand mal seizures. we decided to take our chances and hope that canon was on the 65% chance side of not ever developing them. the doctor said that if he did have a grand mal seizure that we would just have to change up his meds and find something that works for those then. we are praying that we never have to cross that bridge!!

he did a thorough neuro exam on canon which he loved! he did everything perfectly. well, except, hopping on one foot, but he may've gotten his balancing skills from his mama :) we scheduled an appointment for one month to repeat the EEG and meet with the dr again. the beauty of this med is that once you have the right dose, the EEG will be normal, which at that point we will begin the countdown to 2 years of no seizures which will be the point of slowly taking him of his meds to see how he does. if he has some during the 2 years, then once controlled, the countdown starts over. this will be a long road!
we left that appointment so grateful that it only took 10 days from mentioning it to the dr to having already been tested and seen by a pediatric neurologist to having a plan! that was just one of the many times we have seen god's care in the details. we also were grateful that this is what we were dealing with. it could've been so much worse. this sweet boy can still do anything he wants to do once they're controlled! aside from taking medicine twice a day, life is normal. 

he started his medicine the day after his appointment with the neuro at half the strength of his prescribed dose for a week. he complained of his belly hurting and of being tired 45 minutes after his last dose...every time. our biggest prayer at that time was that his belly wouldn't hurt. we didn't want him to dread taking it since it was going to be a daily routine for literally years. during the first week, he had a long seizure (about 25 days after the last one we noticed). a few days later, he started his full dose for the next 3 weeks. after about 1.5 weeks from initially taking it, he stopped complaining of his stomach. and where he had been falling asleep 1-2 times throughout the day, naps became more sporadic (this is the boy who doesn't require sleep and hasn't napped since he was 3). we'd find him asleep in random places at random times. it didn't matter if he napped at 10 am or 5 pm, he'd still fall asleep by 7:30 pm like he hadn't napped at all. we were again grateful for the easy adjustment.
he hadn't asked why he was all of a sudden going to all these appointments or what these people were talking about. he's used to dr's offices and has no fear of them and he trusts us. early that first week, though, we did explain to him why he was having to do the funny tests that made him look like a robot and tested how big/smart/strong he was and why he was now taking medicine every morning and night. we simply told him that his brain was going way too fast and his medicine was telling it to SLOOOOW down. that it doesn't have to work that hard (or "tell your brain to 'chill out, dude!'" in the word's of his daddy!). that was enough of an explanation for him and he laughed and had no questions. we don't want him to be fearful and so far, he's been a champ!

looking back with the knowledge that we now had, we started remembering things that didn't seem significant at the time, but made sense now. there's no way to know when they started, but everything i recalled all started around august when we moved. and i don't know if i can only remember that far back because we had a crazy summer and a crazy year prior to that, and let's face it, most days, i can't remember where i put my keys! once we moved to the new house, canon started spilling his drinks. he had never done that while we lived at nana's, but it now made sense that if he had a seizure, even if it was only 1-2 seconds, in the picking up phase, he'd drop it when he blanked out. first time obedience became a bigger issue. we'd call his name several times before answering. and that's not a cop-out, just makes sense that he's not hearing us mid-seizure because during his long ones, there's nothing i can say that will snap him out of it. learning was becoming more of an issue. canon's always been bright and eager to learn, but working on reading and things was becoming more frustrating to both of us, but it makes sense. he felt lost and confused by spacing in and out during a lesson. so who knows! we'll never know when/how/why the seizures started, but it's just interesting to think about the things they effected.

his follow-up appointment was this past thursday (3/27). we were so anxious to know if the medicine had been working or not. of course, we hadn't seen seizures, but that doesn't mean anything we've come to learn! before meeting with the dr, he wanted him to have an EEG to see how this dose of medicine was controlling the seizures. he wanted him to be sleep deprived so he only allowed him to sleep from 1-3 am. oy. we were dreading this. lane took the first shift and kept him up until 1 while i slept. i then got him up at 3 where we hung out until we left for springfield at 6:45. it took about 45 minutes of me pestering him and moving him to keep him awake, but then he fully woke up and was extremely perky considering the circumstances! we had a sweet time together. my dad drove up that morning to stay with the little boys. he's an early riser by choice!
we thought it would be crazy difficult to keep him awake in the car for the hour-long trip, but he did great! mom and dad were struggling a bit :) while we got all checked in, canon was charming the staff. his personality has become more social over the past few montht we've noticed. he used to be so shy around strangers, but now talks easily with them. he did great at sitting still while the tech placed all the electrodes on his head. the first part of the test he was awake. she had strobe lights going off and then had him hyperventilate by blowing in a pin wheel. both of these things induce seizures. he then napped for 15 minutes while she finished the testing. during this part, she started asking questions about whether or not he had had mri's or cat scans. she commented about this being the craziest EEG she had ever seen in her experience. she then was trying to read it and tell us how she didn't think it was the kind of seizures they were calling it. they whole time she was running her mouth, i kept thinking, "you're not supposed to be telling us anything."
while she was finishing up, i heard the sweetest whisper to my soul, "all i ask is that you trust me." it's the weirdest thing to fully trust god yet wrestle with human emotions. i know without a shadow of a doubt that regardless of the situation i am in, god is loving and faithful and so much bigger than anything my earthly eyes can see, but a pit in my belly is still a real thing. when we walked out, i lost it (silently behind my sunglasses :)). lane and i were feeling very uncomfortable and worried going into the next appointment. it was unspoken for canon's sake in the car ride over, but we both knew what the other was thinking and feeling.

we were once again super impressed with the doctor and staff and office. no waiting and we saw the dr within 5 minutes of being there. he came in and said that canon was still having seizures, but that he only had had 2-3 seizures that lasted a second or 2 each while he was awake. while he was asleep, he had 10-15 seizures that lasted 20-30 seconds. he was encouraged that the medicine had pretty much cut them in half and he was pleased that he hardly had any while awake. he increased his med with a plan to reevaluate in another month. we brought up the things that the EEG tech had said and he walked through each point with us and explained why she didn't know what she was talking about :) we really do trust this dr and the fact that canon had improvement shows we're on the right track. on our way out of town, my dad gave strict orders to get this little guy an icee! canon was happy to comply :)
so that's where we are currently! a few specific prayer requests. since we're in another time of increasing his meds, his stomach aches are back. would you pray for those to be gone? he also has had the stomach bug yesterday and today. we weren't sure if it was the medicine at first, but we're pretty certain that what he's dealt with over the past day is that nasty bug that he's always been so susceptible to. obviously, we want him to not have any seizures. we're just praying that they would be no more. we know god can heal him. but more than anything, we want to glorify god through this whole journey! we are praying that each step we take will be a testament to a powerful, loving god who never leaves our side. my favorite hymn is "it is well with my soul." my prayer is that my heart and my lips will always proclaim this because i know god's heart for his people!

canon today :(

12 comments:

eden said...

Bless y'all's hearts! After finishing reading this, I said the first of many prayers for your sweet son and you too Mama! Love you guys, love your heart! God is so faithful and so so good!

Lauren Fisher said...

Praying for my sweet Canon! It stinks that such a cute, kind, fun, loving, smart kid has to go through something like this, but the exciting thing is that God has a plan! Trusting in Him is all we can do and to know that he is improving already is great news! Love you all and am so thankful for each one of you! xoxo LaLa

Lauren Fisher said...

OH, also can you maybe not post this during work hours?? Waterproof mascara much?

Candace said...

Praying for Canon and that the less risk medicine works perfectly!

anxiously hopeful said...

I'll be praying for Canon and your family as you glorify God through this rotten situation.

Meggie said...

Praying for Cannon! And for mama and daddy too! I know as a parent this is such a scary situation. So thankful God has you all in His hands!

Meggie said...

Sorry... Praying for Canon! One N!

Lauren and Eddie said...

I have two friends who have gone through this EXACT thing. My best friend's little boy was diagnosed around 12-18 months and he's been seizure free for two years. They just weaned him back in the fall from ALL medicines. Praise the Lord! The other friend JUST found out her son had been having silent seizures. He's two weeks seizure free so they're counting down two years now. Let me know if you have specific questions! My best friend is SO sweet and understanding and I'll be glad to put you in touch with her if you don't know anyone walking the same path. :) Prayers for Canon and Mom and Dad! It is such a helpless feeling when babies are diagnosed with something BIG. I felt like I was in a pit of despair when our oldest was diagnosed with a severe food allergy. It's just a helpless feeling!

Sara Lynn said...

I hope he starts to adjust to the medicine and starts to feel better! If God leads you to it he will lead you through it! Prayers for Cannon and your family!

Unknown said...

You expressed all of this so well! I loved reading it and feeling a part of things so I can pray specifically for you all. You are a light to others and I'm so glad you can see where God is working in all this. I'm learning and understanding now that we are always in a 'transition' in life and this is one of them. It makes us who we are when we have possibilities or obstacles. Thanks for sharing about Canon! ps - why is Lauren wearing a veil in her pic? Do you think she could be wearing it right now - like at work and shopping, etc? And I echo Lauren's comment on mascara problems.

Kerry said...

Praying for you all during this difficult time. I hope with each day you feel more peace and less anxiety as God leads you through. Hang in there!

Megan said...

Prayers for you all! My brother has grand mal seizures, so I know how scary it can be. Glad you found a doctor that seems to know what he is doing... That is half the battle!