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/

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