A PANDAS Flare

Today is my Sweet Husband's Birthday!  Mike is 39 years old today, and I couldn't be more happy to be his wife.  I'm so grateful that the Lord knit him in his mother's womb, creating such an incredible destiny for his life! I think about my own boys and the days that they were born - how I fell in love with them immediately, and how I prayed from the beginning that the Lord would capture their hearts.  But I don't know what God will do with their lives and I don't know how He will use them as they grow older.  I look at Mike's life and see him as a baby and now as a grown man facing all sorts of trials and hardships, but facing them each with faith in the God that He loves.  

Michael Wayne McLaughlin at approx age 7

I see Mike stand by me as my partner and I see him love our girls and our boys with reckless abandon, loving them each in the specific ways that they need to be loved.  It's amazing, really and I'm in awe that I get to be loved by such an incredible man.  Happy Birthday, My Love.  


Updates . . . 

I'm still learning more and more about PANDAS.  I guess I always will be learning, just as I am still learning about NKH.  It will be a fluid learning experience, that's for sure.  Right now, Henry is experiencing a PANDAS flare.  Since this is an autoimmune disorder, it has flares just like MS or Celiac disease. The way we know Henry is in a flare is that his behavior gets worse.  Sometimes I think, "How can it get any worse?!", but at this time, you can clearly see an increase in outbursts and we know he is flaring.  We've seen Henry's specialists this past week, both of whom are so loving and have Henry's best interest at heart.  They are working hard for him, for us.  We've put some things in action to hopefully lessen the effects of the PANDAS during this particular flare.  Please pray with us for relief as it affects us all.  

I think many people wonder what Henry's outbursts are really like or why they seem to be so bad.  That's totally understandable.  So, I wanted to give you a picture of what a day with PANDAS is like for us right now, during a flare . . . 

It starts with bed-wetting, each and every night.  We use precautions for Henry and he tries his best, bless his heart, but a 64lb little boy urinates a lot, even overnight!  Sometimes the urinating issues run over into the day, and he takes precautions there too.  I'm grateful that Henry isn't embarrassed at all by this, but I'm afraid that will happen in the future.  

I never know what will set Henry off.  I don't know all of his "triggers" yet, so I feel like I'm walking on egg-shells each day.  During flares, I sometimes wake up to screaming in my face, often being hit or having things thrown at me.  There is refusal to dress the way that he needs to such as wearing socks, wearing warm clothes or even wearing a coat.  He also wears strange layers like shorts under jeans and many times will wear his shirt backwards, on purpose.  All sensory issues, which are also sometimes hard to understand.   

Henry will try to leave the house and has no concept of danger or natural fear.  We've had some scary encounters because of this, even with our alarm system and special top-locks.  He knows how to escape and will do it if he feels the need.  Since he doesn't understand healthy fear, he will climb on top of the car and try to jump off, or walk into a stranger's home without thinking twice.  He will run into the street without looking and without caring what happens. He says "no" to homework and to chores, "no" to basic things he needs to do around the house.  I LOVE how independent Henry is, but I don't like that he does things in his own time and in his own way.  It's hard for us to understand. 

During this flare, we are seeing Henry's OCD symptoms coming out, especially in his thought life.  It happens in other ways too unfortunately, but mainly he gets a thought in his head and can't get it out. Can you imagine how maddening that is for a child?   Part of PANDAS is that it can cause attachment issues.  Henry is so independent, but during this flare he is incredibly clingy and is so frightened to be out of our sight. This includes showering, using the restroom, walking to his classroom, taking the dog outside, jumping on the trampoline (when he knows I can see him directly outside the window).  I hate seeing him so in fear.  I desperately want to take it for him.  

The truth is, we can't force Henry to do things, although I know many of you must think that we should.  You can't do that with PANDAS.  As our psychologist said last week, typical discipline DOES NOT WORK with PANDAS.  Plain and simple.  Although I still try and probably always will.  He just needs to keep meeting with his Behavioral Specialist, who will give him the tools he needs to act appropriately in various situations and settings.  Until then, we wait.  We love Henry where he is and we wait.  We have to ask those around us to wait too - grandparents, teachers, friends' parents, people at church, etc.  It's hard for us to understand as the parents; I can imagine how hard it is for those around us who we ask to wait and just love in the meantime.  But you know what?  Everyone that needs to IS doing just that!  They are loving and waiting and doing whatever they can to help Henry and our entire family.  This isn't Henry's fault.  It's a sickness just like any other thing.  And it is exasperated by our life circumstances and by the trauma and loss he has seen and felt.  It breaks my heart for him and yet I am so encouraged by those who are standing by us and loving Henry the way that he needs to be loved at this time.  

The rest of us are hanging in there.  Conner is doing well in school and is becoming more independent.  Lucy is back at school and loving it, giving us her "Princess Look" whenever we pull into the school parking lot.  She is still having lots of Chorea movements and seizure-like movements, but those don't cause any damage.  I think they just annoy her sometimes.  Mike is doing well and absolutely LOVES his new job.  I'm having an IC flare right now and found out I have to get bifocals - I'm getting old!  

We got out Ellie Kate's old table and chairs for Lucy to use to build her core with.  She is loving it and feels like such a big girl!  And can you see the tiny braid in her hair?  She's growing up so fast!

We are in a happy time, a time where we feel God telling us to move some things around and make different priorities.  It's exciting and scary, all at the same time.  Please pray as we move forward and trust the Lord's leading.  

Lord, I want your way to be CLEAR so that we know exactly what you want for us and for our children.  Thank you for the exciting things you have placed in our hearts and minds.  Show us, Lord and may we not move without you.  

Thank you for our precious friends who love us where we are, who love Henry where he is, and don't judge.  What a blessing the Body of Christ can be to a hurting heart!  Thank you for placing joy in my heart and longings for get-aways with my family to enjoy your creation.  Through Ellie Kate, you've shown me that I need to enjoy the life that you have given and the beautiful world you have created.  Let us all drink in your designs and creativity, Father!  Thank you for giving us joy in the things around us.  

With Hope,
Ryan