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

A Critical Diagnosis

This post is extremely important, as we have recently learned more about Henry's behavioral issues.  We have spoken with him and asked if we could share with all of you a little bit about what has been going on.  Outgoing as always, Henry is more than happy to share, as long as I post some pictures of him, of course.  What I want you to know is, though this information is very serious and we understand the need to protect Henry and his interests, we also want to share with those who have been walking this journey with us.  So, here we go . . .

Our sweet Henry was born with a smile on his face.  Well actually, he was technically smiling when I first held him the day he was born.  He was a laid-back baby that has always been full of joy and life.  When Ellie was so sick and shortly after Lucy was born, Henry's behavior started to change.  It really deteriorated after Ellie Kate died and of course we blamed his behavior on all that Henry had to deal with in his little heart and mind.  He was only 3.5 years old, and that's a lot to take in for a little man.

My Sweet Smiling Boy!

One Year

 

Happy Henry

Since that time, Henry's behavior has worsened, although we have desperately tried to help him in every way possible.  Henry has been in individual counseling and group counseling.  We also did PCIT training with him, which is quite intensive.  We've worked with counselors and doctors and nurses, all trying to help Henry.  Last summer we finally resorted to a psychiatrist. 

Henry missing Ellie Kate

You may remember that we ended up being assigned to a precious physician who once attended Bridgeway Church with us, and had also watched Ellie Kate so we could attend the service.  Upon walking into that psychiatrist office, all of my fears melted away as I realized that the Holy Spirit had brought us there - that the Father had navigated and set things into motion better than I could have hoped or planned.  With our physician's help, we started Henry on a plan and he also eventually received several diagnoses.  Again, this isn't far-fetched by any means, seeing that Henry has faced so  much in his young life.  With the prayers of our physician, we were continuing on with our treatment, although we weren't seeing much of a change. 

One of Lucy's therapists heard me talking about Henry's behavior and had some suggestions and asked a few questions.  She told me about PANDAS, a rare auto-immune disorder that affects children and causes drastic changes in their behavior.  She had mentioned this to me a year or two ago, but we didn't get very far with it.  It is rare and a fairly young disorder, and not much is known about it, so not many doctors are very knowledgeable about it. 

PANDAS had entered my mind the last few weeks, although I kept thinking about how we didn't get far the first time I mentioned it.  But then again, this therapist has known Henry since before he was born, and she has seen his drastic change in behavior.  She had seen how hard we tried and knew what all we had tried, all to little or no avail. 

Early last week, the Holy Spirit had PANDAS burning so hot in my heart and mind that I couldn't stop thinking about it.  I researched it as best as I could.  I prayed about it, and I KNEW without a doubt, that God wanted us to test Henry for this rare disease.  I called our physician in the psychiatrist office, and she ordered the blood testing right away.  I picked up the orders and took Henry in for his blood work two days later, and on Friday we received the news . . . Henry DOES have PANDAS. 

Now, what the heck IS PANDAS??? 

"PANDAS/PANS is an infection-triggered autoimmune condition that interferes with normal neurologic activity.  In PANDAS/PANS patients, antibodies recognize and mistakenly attack normal receptors and antigens found within the brain.  This molecular mimicry-based attack can be directed against dopamine receptors, lysoganglioside, tubulin, and other neurologic targets located within the brain.  Binding can interfere with, or cause over-stimulation of neurologic activity.  This can contribute to a whole host of movement and neuropsychiatric disorders, OCD, and abnormal neurological behavior.  Often, this condition may be treated only symptomatically with neuropsychiatric drugs, but the underlying basis is an infection triggered autoimmune disorder attacking the brain".  - Moleculara Labs

And get this, Henry has almost ALL of the PANDAS/PANS symptoms!  Do you know what this means for our Little Man?!  It means that, as far as we know, it has been this autoimmune disorder that has been causing his behavioral issues!  It means that he truly hasn't been able to control himself.  It breaks my heart to know that Henry really has been telling the truth - that he can't control his thoughts and actions, but I now have hope in knowing we have a diagnosis.  And while there is no cure, there are things we can do to help Henry and his symptoms.  Can you imagine the freedom this will bring to Henry?  To our family?  I just cannot even tell you!!!  And to think, it was the Holy Spirit who told me to ask that Henry be tested!  God is so good to help US take care of Henry in the way that he needs to be cared for. 

We have started the new treatment for Henry and have already started seeing a difference (we had the results on Friday and our physician started his treatment that day!).  Mike and I are SO relieved, even though PANDAS is a serious neurological condition.  Henry is relieved to know that something is going to help him and he is also relieved to know that he won't be getting in trouble as much, bless his heart. 

The leading PANDAS/PANS doctor happens to be at Boston Children's Hospital and just "happens" to be the same neurologist that presented at our NKH Conference this past October.  I met him there as he was talking about NKH and now I hope to visit with him about Henry and PANDAS.  God works in such intricate ways, doesn't he? 

I want to thank you ALL for praying for Henry in specific ways.  Thank you to everyone who has and is loving Henry no matter what - even when it is hard physically, mentally and emotionally.  Thank you to those who have made life-changes in order to accommodate Henry (Eastlake Elementary,  Bridgeway Church and Bridgeway Kids).  Henry will struggle with this his entire life, unless the Lord delivers him from this.  He will have ups and downs and flares, and we still we need some extra help and extra grace.  However, we just couldn't be more humbled and grateful for the ways you have loved and cared for our son thus far.  Knowing that he hasn't been excluded and hasn't felt left-out, even with his troubled behavior, has been a priceless and precious thing. 

Please continue to pray for our Precious Boy and for our entire family, school family and church family as we learn how to live PANDAS out with Henry. I know the Lord will connect us to the right organizations, the right doctors, the best information and hopefully He will connect us to some other great PANDAS families! 

For More Information on PANDAS:
http://pandasnetwork.org/understandingpandaspans/about-pandaspans/whatispandas/

http://www.moleculera.com/research/

Youtube Video Description

Down and Out with a Sick Little Lucy

Oh, Brother.  I am worn and weary tonight, friends.  It has been a very, very long day.  Mindy and I took Lucy Belle to her ORL/ENT appointment.  They were very busy, so we ended up waiting a very long time.  The doctor is just so wonderful and quick to listen to me.  He is also good at caring for Lucy and her "non-typical" needs:).

The good news is that Lucy's ears are clear!  Both tubes are in place, which we didn't think was the case.  No ear infections in our girl, thank the Lord Jesus (really and truly).  But . . . Lucy's throat is super red and her tonsils are really big.  She's also still screaming most of the time in pain.  It isn't screaming seizures, and I really don't believe it is a crying spell.  I believe she is hurting, so we have to do our best as a team (doctors included of course) to get to the bottom of it all and get Lucy feeling better.

Our ENT believes that we will likely need to get Lucy's tonsils out.  The problem is that he thinks this will be a very hard surgery on our girl.  He said to plan on staying at least a week (we don't have a date or anything yet, he was just preparing us).  It makes me sad to think of putting Lucy through something so hard, but I also HATE seeing her in pain!

After the ENT, we went straight down for a strep and flu test (boy, I am so very glad Mindy was with me to help!).  You may remember that Lucy has been positive for strep throat for almost a month now.  That has brought on the almost endless screaming, the need for narcotics, the extra doctor visits, the diarrhea, the antibiotics, etc.  In fact, she's been on four antibiotics plus the IV rocephin during our last hospital stay (we didn't swab for strep at that time, but we have all come to believe that she likely had it at that point).  NOTHING HAS WORKED. She tested positive again today for strep.  SIGH.  They even tested Lu Lu for MRSA because of the re-occurring, non-stop infections that aren't responding to ANY of the antibiotics.  As one of our docs said today, Lucy has had all the "big gun" antibiotics pulled on her, and nothing is touching the infection.

Because of the infection and pain, Lucy has had a huge increase in seizures.  We've seen seizures that are more severe, longer-lasting and seizures that are presenting differently than usual.  Because of this, we also visited neurology today, where our sweet neuro upped some of Lucy's seizure meds.  She also thought that Lucy may be having severe headaches or migraines since she's hitting her head and pulling her hair out in pain.  So, we are starting a med for that as well.

So, what do we do to stop all of this???  The Infectious Disease doctors are being consulted and will be added to our team for this situation.  I'm praying they can shed some light and offer some remedies.  They at least have to have some ideas for treatment, right??  We are waiting for those MRSA results, and we are waiting to hear from our team.  I am SO grateful to have all of our specialists at OU Children's where they can quickly and easily share information, confer and make plans.  It's a pretty amazing thing, and I'm anxious to hear what they come up with so that Our Girl can start feeling better.  And God-granted, the increased seizure meds and additional medications will help with the issues Lucy is having.

Here are some helpful ways to pray:

• Pray for Lucy's complete healing
• Pray for her ear and throat pain to stop (her throat pain causes her ears and head hurt)
• Pray that seizures will slow and that Lucy Belle will respond well to the med increases
• Pray for supernatural rest for each of our family members, including my parents and our nurses who are all doing more than their share to help us!
• Pray for God's provision for our family

On a VERY happy note, I'm posting a precious, precious video of Lucy Belle.  This was taken at our outpatient therapy yesterday with our Speech Pathologist, Lendy.  This is just a glimpse of how well Lucy is doing developmentally!  I wish I had taken the video longer.  This video is Lucy and her version of signing "more".  We are just thrilled and can't wait to see the other things that the Father will all Lucy to accomplish!  Praise God!  

Tired, Weary and Down and Out . . . 

Ryan

March 21, 2006

First of all, I thank you for praying for Ellie - especially this past week as we have been searching for ways to ease her pain and discomfort.  I am happy to say she is no longer crying around the clock and she seems to be much more comfortable!  We have worked with doctors to tweak her meds a bit which has helped her to be more comfortable.  Of course, we know God has touched her as well!

Today we saw Ellie's neurologist.  The doctor was encouraged by EK's development.  She is definitely doing better than what all of our doctors have expected!  The neurologist is especially excited about the fact that there have been no seizures.  Praise the Lord for that!

There are a few things that the neurologist is concerned  with.  EK is hyper-ketonic or in a sense, hyper-active.  She has so many signals going off in her brain, which cause her to move around a lot.  She is very easily overstimulated.  This hyper-activity is the cause for some of her irregular movements, her strange eye movements, and at times, her crying.  We don't know if this will be something she deals with all of her life, but we do know that it is directly related to NKH.  Ellie does however calm down and finally focus.  She does this especially when she has boundaries - either our arms or her car seat!

As Ellie gets older, we are realizing more and more that our little girl is not "normal".  We found out recently that we are the only case of NKH known in OK at this time.  Also, the oldest known person with NKH is only 13.  These things can be overwhelming at times.  But, we know God has worked in Ellie in incredible ways thus far, and He isn't through yet!  We are choosing to treasure every moment, every day that we have with our precious little girl.

Ways to Pray:
1.  Pray that EK would gain weight!  She desperately needs to gain some weight.  She just burns all of her calories off with all of her movement and her crying.
2.  Pray that she would continue to develop:
    a.  focus more
    b. laugh and smile more
3.  Pray that she would be able to better control her movements
4.  Pray that she wouldn't be in any pain

Also, please join us in praying for other families dealing with NKH.  Our hearts break for those with NKH children who are not doing as well as our Ellie. What a tough thing this is (for more info check out http://www.nkh-network.org/)!

One exciting thing that happened today - Ellie laughed for the first time!  She smiled more than she ever has tonight, which was SO incredibly encouraging to Mike and I.  Please pray that she continues to do things like that!

I leave you with words from a song that has been floating through my mind all day . . . "Praise God from whom all blessings flow!  Praise Him all creatures dear below!  Praise Him above ye heavenly host!  Praise Father, Son and Holy Ghost".

We love you,
Ryan
PS:  We recently took some family pictures, as we wanted to capture this time in our lives with EK.  A few of them are posted on this site.  I hope you enjoy!