Fourth Time's the Charm? Another EEG...

Aunt Melissa met us for breakfast in the Cook's cafeteria after our 8 am appointment this morning.

I didn't put much effort into this post, so I'm sorry in advance for how poorly written it is.  I'm just too tired to try very hard to assort my thoughts into a pleasing order.

When we scheduled the MRI for Hayes in August and expected to see our neurologist to discuss the results in the following November, we had no idea the events that would transpire that would lead us to meet with the doctor an entire month early.  Never would we have expected the events that could occur within a matter of weeks.

So it happens that in the six weeks since the MRI, we have witnessed Hayes have countless seizures, visited the children's hospital five times, watched Hayes endure the EEG procedures four times, administered three different medications 94 times, missed a lot of days at work, and driven even more miles.

It. has. been. crazy, up. in. here.

Today, we finally met again with the neurologist who's been with Hayes since he was younger than six months old.  He gave us a wealth of information, compassion, and comfort.  We like him because he is straightforward in his discussion and treatment approach.  We reviewed Hayes' MRI and EEG results, responses to medication thus far (we began ONFI last Friday night with good results, and began tapering off the steroid yesterday due to the undesirable side effects and the fact that he was still having seizures LIKE WHOA), and discussed the future (as far as the next few months).  He (the doctor) ordered labs, an ambulatory EEG, planned for an upcoming spinal tap (to check for metabolic conditions that may be causing his underlying brain disorder), and answered our questions for over an hour.

We'll be checking this EEG unit every hour or so for its blinking yellow light, which means the brainwaves are still being recorded.

After being at Cook's rather longer than we'd planned, we brought Hayes home once again hooked up to his EEG gear.  (An ambulatory EEG is completely mobile - we brought the whole EEG unit, which is about the size of a paperback novel - home with us.)  We'll be monitoring his brain over the next 24 hours to assess how well the ONFI is actually working, and then Koby will return the EEG unit to Cook's tomorrow.  If the medicine is not working as well as we'd hoped to stop the seizures, we'll increase the dosage and/or begin ACTH injections.  The ACTH injections carry a less-than-attractive array of side-effects and risks, but prove effective quickly when most other medicines fail.

The reason we're treating these seizures so aggressively lies in the diagnosis that was added to Hayes' collection today: West Syndrome.   This is a rare form of epilepsy that occurs primarily in infants (which is the only reason the epilepsy specialist did not attach this name to Hayes' seizures - but our neuro says, and I quote, "If it quacks like a duck...") and can occur for a variety of reasons, but generally leads to unfavorable long-term consequences if the seizures cannot be completely eradicated.  If uncontrolled, Infantile Spasms can evolve into a lifelong epileptic condition called Lennox Gastaut Syndrome (LGS).  (Please note that Hayes does not have a diagnosis of LGS right now.)

Even though this a brand new diagnosis, Koby and I aren't blindsided by any of the information we got today.  The worst part of the day happened as Hayes was getting his EEG underway; the tech was testing all the connections and watching his brainwaves on the monitor and...

I think he had a seizure.

Total nightmarish feeling.  Very, very bad feeling.  Please pray with all your might that the little blip I saw on the computer screen, that the instantaneous flinch of his precious body was the LAST SEIZURE HE'LL EVER HAVE.  I'd really appreciate it.

At the conclusion of our appointment this morning, our neurologist casually added, "Oh! And thanks for the blog."

Apparently, there is an employee whose job it is to scour the internet and social media for mentions of Cook Children's Hospital and see what's said... which gives me an idea.  (It also gives me an idea for a serious career calling that I totally missed - this girl can Google ANYTHING.  I've probably done two bachelor's degree's worth of research on Wikipedia.)

Hey, Cook Children's Hospital (a.k.a. Cook's, conveniently located in Fort Worth, Texas for your convenience), you know what would be awesome?! Why not start an EEG customer loyalty program?  You know, BOGO offers?  Punch cards?  Frequent flyer miles?  Just a thought... (Cook Children's.  :-) )

Peace out, dudes and dudettes.

We Can't EVEN - a.k.a. "A Feeble Thanks"

Y'all.  I can't even.

Sweet Snap from Eliz's bff.

Can't wait to wear our Hayes Bear shirts! XOXO MLE

(Yummy surprise on our doorstep from my sister's best friend.)

A church sister read about my disdain for washing/sorting socks... so she brought new ones.  HA!

Sweet Snap from one of my BFFs and her BBF (beautiful baby face).

Since our last post about Hayes' seizures, and even since we'd mentioned our concern about his 'spasms', we've been

overwhelmed

with an outpouring of love, prayer, encouragement, and generosity.

I'm not even posting pictures of the cards Hayes has received, the personal texts, Facebook messages posts, tags, and re-posts, retweets, phone calls, updates on shirt sales from our sister Elizabeth, faculty e-mails, and shout-outs we've been getting from ALL OVER.

I need better words.  I need better words to be able to say "Thank you... thank you, so much."  Those words seem feeble.

They seem feeble when I want to say, "You've transformed my recent "Please, please, please" prayers into "THANK YOU, Thank you!" prayers."

They seem feeble when I am bombarded (bombarded in the best way - like an over-abundance of cupcakes... or a battering of butterflies) on all fronts - Facebook, email, Instagram, Snapchat, text messaging, voicemail, real mail - by encouragement and assistance for Hayes.

Our family, friends, colleagues, employers, church family, friends of family, family of friends, friends of friends, (etc,) and STRANGERS we've never met have come to our aid by praying and showing support for Hayes.

I am so thankful and brought to a new mindfulness of the power of helping - and the many, many ways we're blessed in the current time to be able to help.

Y'all.  I am so guilty of not reaching out all the times when I have the power and ability to do so.  I think it takes a great courage to help someone.  It takes courage to say, "I love you and I'm thinking about you.  Whatever you need, I'm here."  THANK YOU for the courage you've shown in reaching out to us, for thinking and praying for us.

I am so thankful for social media.  What a wonderful instrument it can be in the arena of giving!  What an awareness it can raise for a family's needs!  What a way someone can feel able to help, when he or she may be too far to away make a meal, pick up a kid from daycare, or visit someone at their home.  I know this because I've watched social media help others, and now it's helping my family.

So, someone get on it.  Invent some new jargon that will echo the language, the hope and relief and happiness of my heart when I think of you all.  Then say that to yourselves, from us.

Pre-balded Hayes and semi-naked Knox.

And the Bear himself?  He's been in pretty good spirits since leaving the hospital.  We've ALMOST got all the glue used for the sensors off his head despite daily baths and various product attempts (no, I'm not joking - it is incredibly stuck and the amount of scrubbing it would take would cause a sore on his scalp, and I'm still not sure he's forgiven me from the haircut trauma I caused him last week).

His seizures seemed to stop while the ONFI was in his system, but beginning on Friday, he started having seizures again.  Today he probably had the most seizures I've ever witnessed him having.  Please keep him in your prayers.  We are going back to Cook's on Friday for a 30 min EEG, but we will have to wait to reconvene with our neurologist (also at Cook's) until next Wednesday, because they couldn't get those two appointments together on such a short notice.

AND YES, Knox is wearing Pull-Ups.  I really doooooooon't want to talk about it. (Potty training is hard. While you're on bended knee re: Hayes, would you mind sending up a quick one for K on this front?  95% kidding here,  That's 5% serious.)

We love and appreciate you all.  Good night.

My Son Hayes Has Epilepsy

My son Hayes has epilepsy.

That probably sounds more melodramatic than I really need it to be, but it's true.  In my last post, I mentioned that we'd noticed Hayes having what we'd previously called 'spasms' (which we now know are seizures) at the very beginning of September.  I contacted our neurologist, who ordered a 30 minute EEG for Hayes.

During the EEG, Hayes did not have a seizure, but we've since learned that even while his brain did not show seizure activity, it had patterns that indicated he was likely to have seizures.

The day following the EEG, I was able to capture one of his seizures on my iPhone and e-mail it to our neurologist, who immediately ordered a 24 hour EEG, which was finally scheduled a week and a day after the initial EEG.  I am so incredibly thankful that camera phones are a thing - there is no telling how many 30 minute EEGs we would have had to endure before one caught a seizure.

The night before the 24 hour EEG, I decided to minimize the pain Hayes would experience while attaching/detaching the EEG sensors by cutting his hair. Things escalated quickly - Hayes was not taking kindly to the hair cut, and fearing that he'd inadvertently make me stab him with the scissors, I reverted to the clippers.  And now, he is bald.

Yesterday we arrived at Cook Children's Medical Center at 10:00 am (or a little after, since I had to turn, turn, turn, up to the very highest level of the parking garage - that hospital holds A LOT of people) to begin the 24 hour EEG.  I was so relieved that we weren't having to sleep-deprive Hayes for this observation, like we did for the last EEG.

Hayes had a seizure almost immediately after he was hooked up to the monitor, around the peak time frame that I'd mentioned noticing/making note of his seizures.  (I've noticed him generally having them in clusters of about 10 minutes or less apart a few hours after waking and before lunch time, and then in the later afternoon and early evening.  But, he will occasionally have them in sporadic isolation or clusters at any time throughout the day.)

Hayes slept a lot during the day ... (more about THAT later...) but he did have a few more seizures that we were able to mark.  Each time Hayes would have 'an event', I would push a red button and the people watching via the video camera in our room (he was humanly-monitored as well for the entire duration) would mark it on the computer so the physical "event" would correspond with the brain activity.

Around 3:00 / 3:30 (while Hayes was still sleeping), the epilepsy-neurologist specialist came in to let me know that the seizures that Hayes had already had were classified as myotonic clonic.  Myotonic clonic seizures can be damaging to the brain, and to stop them he recommended we begin administering the anti-epileptic drug ONFI.  (*30 minutes pass as I ask this doctor probably every question I can think of about the brain, the seizures, and this drug*)  The seizures are spasm-like jerks of the muscles, which you can see in the video at the very end of the post.  The doctor left, and Hayes had a very late lunch.

Koby arrived just before 7 pm and we took turns going to grab dinner in the cafeteria below, then bringing the food up to the room to eat.  Hayes dozed after having another bottle and then had dinner around 8 pm.

A poor, unsuspecting pharmacist came in to brief me on ONFI and stayed 20 minutes longer than he'd probably expected while I asked him to describe the reactions of every human who has ever taken this drug.  No, okay.  But almost.  

Around 9 pm, Hayes' nurse came in to administer his first dosage of ONFI.  

Let me quickly tell you that anti-epileptic drugs generally work because they depress, or slow down, the nervous system.

Except for Hayes.  

Side note - Hayes can get hyper sometimes.  In fact, almost immediately after he was hooked up to the EEG monitor, I took him out of bed in order to give him a snack.  He began kicking and thrashing about in his excitement of THE FOOD THE FOOD THE FOOD.  Unfortunately, the people watching the video surveillance have not had the pleasure of seeing my son Hayes eat before, so I was a little confused when I heard, "We're coming, Mom (everyone called me "Mom") and then a nurse busted through my door saying "OK! Something happened?"

And I said... "Yes... he saw the apple sauce."

This is Hayes' "I'm eating food" dance, complete with new beat-boxing skill and kick-finish.

Apparently, my son expecting food looks like a grand mal (tonic clonic) seizure.

Back to the story - enough about that.  HAYES ON ONFI = that hyper kid you remember from elementary school who should have been medicated but never was.  Except on crack.

Oh, and remember how I'd let Hayes sleep all day?

Hayes beat-boxed and clapped and yelled (loudly) until about 12:30 am, when he remembered that he hated all the wires on his head, at which point he began crying (loudly) for another 30 minutes.  We finally gave him some Tylenol, and he was able to rest.

At 6 am, Hayes had some blood drawn for a lab test that his endocrinologist orders every 6 months.  Unfortunately, this didn't go well and ended with him being stuck in both arms before we could get the blood he needed.

Hayes dozed on and off before breakfast.  Koby and I again took turns in getting breakfast.  We hoped we'd be leaving around the 24 hour mark of Hayes' arrival (10 or 11 a.m.) , but we began to suspect from the nurses' indirect answers that it may not work out that way.  (Side note - all the nurses and doctors and family liaisons and social workers and chaplains and social workers again and then family liaisons who came in our room again were WONDERFUL, as are most of the employees we interact with at Cook's.) 

Finally, the neurologist came in between 2 and 3 pm, after we'd learned he'd wanted to confer with his colleagues regarding Hayes' video EEG.  He let us know that they'd identified an additional type of seizure, this one called complex-partial.  These seizures are harder to recognize, as they don't generally involve a convulsion of the muscles.  When Hayes has them, he 'blanks out' and stares into space, and they last for about 7-10 seconds.  This concerned Koby and I, because Hayes has been doing that almost his whole life, which I've brought up with our neurologist before.  We'd attributed it to sensory-processing overload, almost like a coping mechanism.  

Because of this additional type of seizure, our epilepsy-specialist neuro wanted to hold off on the ONFI until we tried a 5 week course of oral steroids.  Steroids cannot be administered for long periods of time because of the side effects, so he wanted to try this first and not in conjunction with the ONFI, so as not to confuse which medication was effective or ineffective.  

So.... no ONFI.  Steroids.  (Enter 1,000 questions.  Click here to see one of the sites I visited after thinking, why steroids?)  Steroids can be immune system suppressors, so Hayes will be avoiding crowds/daycare for the next five weeks while we begin a steroid regimen and then wean him off of the medication.

And then we stayed at the hospital for another three hours because of complications with a urine lab (it leaked) and my prescription insurance (I haven't got the card yet) ...

And then we were driving home and it was wonderful.

Hayes convinced a sympathetic nurse that he didn't need the awful gauze on his head, and he promised to stop tapping and picking at it.

 Hayes having seizures isn't wholly alarming or shocking to us - his potential risk for having seizures is one reason we've been seeing a neurologist for over a year.  In essence, this will just be an adjustment as we begin medications and learn to live with seizures (hopefully not for very long!).  We know that his seizures are just symptoms of the underlying problem that we have yet to identify.

We are desperate to end these seizures because we want Hayes to reach his full potential, and these episodes inhibit his brain from progressing.  We want him to keep moving forward and learning and achieving until he is doing all that he was and is able to do.  We know that his full potential looks different than most others', but we are so grateful for the things he is able to do, and dread him losing those abilities.

Koby and I want to thank our families, coworkers and employers, caregivers, therapists, and friends who have been a constant support in this new development with Hayes.  We have had teachers cover our classes at almost a moment's notice, friends pick up Knox from daycare and offer to bring food to the hospital, and family who are willing to continually pray, encourage and sacrifice their time, resources, and energy to ensure that Hayes is offered the best-possible healing environment.  Hayes' and Knox's school caregivers are wonderful and flexible, and Hayes' therapy and intervention team is second to none.  THANK YOU ALL for your prayers and encouragement.  We feel very loved and lifted up.

For those interested, this is a video of Hayes during one of his myotonic clonic seizures.  The seizure happens within the last seconds of the video.  You can see that he is upset or disoriented after the event, which is a normal occurrence after the seizures.