Seizure Monster

Oh, Seizure Monster, how we hate Thee!  Today started out so peacefully.  I had the morning to myself to get things done, and it was wonderful!  Our afternoon was set to be full of appointments- physical and occupational therapy for Lucy and a check-up for Conner (he needs one for school).
*PURPLE is being used in this post bc it is the color that represent Epilepsy

Shortly before loading Lucy into the van, I noticed that she had one of her "hard seizures", which are not gran-mal, or the type you think of with every body part shaking.  However, her hard seizures DO affect her entire body.  The seizure I saw was only a couple of seconds long, so I just decided to watch her.  Once in the car, Lucy started having them, almost non-stop.  These back-to-back seizures are called "clusters".  We picked Conner up and Lucy continued to seize, on and off.  Instead of going to therapy and instead of making Conner's appointment,  I decided we needed to go straight to the ER.

When we pulled up to OU, Lucy was still seizing until we got to the elevators.  Then . . .  she was FINE.  We call this, "back to baseline".  She acted totally herself, giggles and all!  I decided to take her quickly to the Neurology dept and have a nurse take an immediate look at her, rather than waiting in the ER, knowing that even at the best, she wouldn't be evaluated for several minutes and even then, they would need to get a history.  This was a split-decision and one that was hard to make.  God was so good though because once we got upstairs, as Lucy started seizing again, they took us right back into the clinic.  Our doctor came to see us, which is HUGE, seeing that she stepped out of clinic to do so..  The neurology clinic at OU is in high demand and it takes months to be seen in the clinic.  For our doctor to step away and come quickly to us . . . well, it's a sign of a great doctor! Lucy was evaluated, and her breathing and other sats were stable, so we were able to set up a plan and increased her meds. It looks like Miss Lu Lu has had quite the growth spurt and many has "just" outgrown her current doses.  That's our hope  - that this is all from her weight gain and that this increase isn't a sign of illness or progression of NKH. 


I was disheartened Lucy seized on our way home and has seized on and off all evening.  We've followed our doctor's directions and have recently given rescue meds.  If she continues to seize, we will need to go back to the hospital.  Please pray that seizures will STOP right this moment and that they will stay away for good!  

Air Conditioner - this seemed to little compared to Lucy's health, but it just added to the stress.  This summer, our air conditioner broke and we were able to fix it, but they had told us it was on it's last leg and the next time it failed, we would need a brand new one.  EEEEK!  When it was 78 degrees with the air trying to blow, my heart sank.  The thought came to mind to turn it off while I took Lucy to the ER.  It couldn't hurt, right?  When came back several hours later, I turned back on and headed to my Parent's house to rest in the cool air.  I went back to check on it an hour later and there was no change.  Dang it!  I prayed and I know many of you were praying too.  I left it on and went back.  When Mike stopped by the house after work, the house was cooling off!  And by the time we came back around 830, it was back to normal and is STILL RUNNING!!  I believe God touched our air conditioner and healed it, at least for the time being.  We are SO grateful for your petitions on behalf of something as little as our air conditioner!  God is SO good! We are still in amazement today!


UPDATE for TODAY, 8/24/16:

After the rescue meds were given last night, we saw NO sign of seizure activity. Lucy slept well but hasn't been to baseline, hasn't been back to herself, yet today.  She's had more seizures this morning, so we've called the Neurologist and we are waiting to hear what to do next.   Her body is likely exhausted from the trauma and from the increase in meds, but even with all of that, we wouldn't expect seizures to continue.

I so appreciate your love, prayers and encouragement.  Our Church, Bridgeway, jumped up and into action yesterday, already loving on us in word and deed.  Those texts, those emails, those calls, those visits . . . you don't know how much they mean.  We often feel isolated, even after all of these years.  Yes, WE feel alone and don't have as many close friends as you might think (although we have a great group of support and love).  So when people reach out in love and concern, it touches us and lifts our spirits more than I can fully explain.  

SEIZURE Explanation:  I know all of this can be so confusing and even scary, esp when you see seizures on TV where people are dying, or when a person is in a terrible situation, laying in the ER with perplexed doctors. I'd like to try to clear some things up, at least from a "Seizure Mom", so to speak.

No matter what, Seizures ARE scary and you DO want to stop them.  With NKH (and other neurological disorders and diseases), we must expect seizures because they come with the disorder.  Not ALL seizures call for a trip to the ER, and any "seizure-mommy" will tell you the same thing.  Sometimes the best thing to do is to stay at home and try to get through the seizures.  Moms/Dads/Guardians must use their best judgement and go with their gut when seizures occur.  It's important for us to be in tune with our child and also be informed as well as possible.

The time to call 911 or a time to go to the ER would be one of these things 

(although not limited to, and this is my opinion only).  

1. If a person, without a history of seizures, starts to seize/if you are with a stranger who starts to seize - call 911
2. If your child starts holding their breath and starts turning blue during seizure - call 911
3. If a child hurts themselves during a seizure (they may bleed or have a concussion) - call 911
4. If your child has a high fever and starts seizing - call 911 or take to the ER immediately
5. If the seizure lasts longer than 2-5 minutes, call 911
6. If clusters don't stop, especially for over 30 mins (after rescue meds), call 911 or take to the ER
7. If you are a care giver and don't know how to give rescue meds, call 911 or take to the ER (and contact parents)

Oh, Friends! THANK YOU for your continued prayers for today, and for Miss Lucy.  We also have a very important meeting for Henry late morning, so we are asking the Lord to balance all of that out, while protecting BOTH children in the process.  Our lives are definitely ones of pure TRUST and God shows us over and over again, that WE are not in control.  We are forever grateful for those reminders, even if they hurt.  HE is glorified and we know He does these things for OUR good.  

We'll Keep You Posted - 

Ryan