Open Kimono

I’ve always been a really really, at times painfully I realize, open blunt honest person. It’s just how God made me… I’ve learned over the years it’s a blessing and curse. So, when I was considering going full-out open about someone else’s disease, our seven-year old daughter’s, I had to really do some knee talking with God. It’ s one thing for me to spill MY guts but it’s another thing to decide essentially for my child that I was going to tell her story…and it’s an ugly story.

Sure I asked her if she wanted to tell her story, but let’s face it she’s seven. I warned her about the fact that one day she’ll be 16 and someone at school might find an article about her or see the documentary she will be in…and that could feel really really weird. I’m pretty sure she could not really grasp the feeling of embarrassed teenage future so in the end, yes I made the call.

As I prayed about it..what to share, if to share, I kept coming back to… if this was cancer I’d have no qualms about showing and sharing. Because people “get” cancer right? They understand it…and it is certainly not your fault that you have it…so it’s cool to talk about. OK to share.

But… mental illness (and I had a hard time just typing the words “mental illness” because honestly I see this as a totally physical illness…but) no no certainly that has to be someone’s fault. Like at least bad genes. And we wouldn’t want to talk about it because it could “come back to haunt her in the future” she might “become labeled.” BUT we don’t treat kids with cancer, or epilepsy or lupus, or arthritis like that. I’ve I believe this is a “real” disease then I have to talk about it as such.

The reason why the gap between how we treat disorders of the brain and those of the body exists is because of the above…no one wants to talk about it, or risk being pinned with a stigma. The only way to bring the brain back into the body for the medical community- is to talk about it as part of the whole.

So honey, forgive me, sweet wonderful daughter who had absolutely noting to do with “getting” this horrid disease I have to tell your story, our story, my story because I’m that sure that God made us that strong and that we can handle any fall out.

The other issue that bounced back to me over and over as I prayed is PRIDE. I have to capitalize every letter in PRIDE because honestly, it’s at the root of pretty much anything bad that’s been deeply examined.  If I totally let go of PRIDE of worry about what people thought would I then be ok telling the story? Would I let PRIDE keep me for helping another family -keep them from making this just a three-week on antibiotics illness vs a 15 month, hand fulls of doctors, tens of thousands of dollars, three trips to DC, surgery and who knows what else… disease?

I love what C.S. Lewis says about pride, “a proud man is always looking down on things and people; and, of course, as long as you’re looking down, you can’t see something that’s above you.”

 
 

Finally, this was the deal sealer, was I going to keep what I know God is doing to myself? As the kids song goes, “hide it under a bushel…NO…I’m gonna let it shine.”

So in my previous post I started telling you where we are and how we got here.

Let me update you.

First a quick and dirty lesson on PANDAS.

What the heck is PANDAS?

Straight from the NIH website:

PANDAS is short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. A child may be diagnosed with PANDAS when:

  • Obsessive compulsive disorder (OCD) and/or tic disorders suddenly appear following a strep infection (such as strep throat or scarlet fever); or
  • The symptoms of OCD or tic symptoms suddenly become worse following a strep infection.

The symptoms are usually dramatic, happen “overnight and out of the blue,” and can include motor and/or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable, experience anxiety attacks, or show concerns about separating from parents or loved ones.

Wait what is the NIH?

An agency of the United States Department of Health and Human Services, it is the primary agency of the United States government responsible for biomedical and health-related research. The NIH both conducts its own scientific research through its Intramural Research Program (IRP) and provides major biomedical research funding to non-NIH research facilities through its Extramural Research Program.

In my term it’s the command center for health research in the U.S.

How does PANDAS look for us?

In March of 2014 our daughter had a strep infection. About 4 months later she began having extreme separation anxiety. She stared Kindergarten and shortly after began having daily “fits.” many in the PANDAS community call these “Flairs.”   These fits consisted of (in the beginning) complaining that something was in or wrong with her throat she would voice this complaint right when the car door shut from carpool she would repeat the words “my throat hurts” thousands of times and eventually erupt into screaming (and I’m talking about screaming at the top of her lungs in a moving car). Things got worse from there…

Here is the path we worked:

  • Something IS really wrong with her throat -no ruled out.  I need to point out here that I brought a sheet about PANDAS that I printed off to her pediatrician he told me that PANDAS is “controversial” and since she did not currently have strep she could not have PANDAS. Totally a position that only someone who knows very little to nothing about the disease could take.
  • She has a panic disorder -7 months of exposure therapy with a wonderful experienced child psychologist= NOTHING
  • She has a learning disability that is making school troubling for her- NOPE extensive testing basically nothing.
  • Two psychiatrist and three SSRI’s- NOTHING although our second psych I have to credit he did insist that he believed there was a medical underpinning to our daughter’s disease and that he would not prescribe any further medication until we ruled that out. YES!!
  • Pediatric Neurologist, 5 days in the hospital, MRI, EEG, lumbar puncture, a TON of blood work- basically nothing we did see a history of strep in the blood and white blood cells in spinal fluid. so there was “something” just ..well no one knew what to do.
  • Could it be a Sensory Processing Disorder??? Well yes no..it’s part of PANDAS

Here is an interview of me discussing our path done by Film Maker Tim Sorel – He is behind the Documentary on PANDAS My Kid Is Not Crazy coming in early 2016.

Her symptoms

  • extreme OCD
  • repeating words or questions without being able to control it
  • Self harm-picking scabs to cause bleeding (not in a normal kid way in a I’m loosing it and I need to feel something way)
  • extreme separation anxiety (trying to leave the school to “find me” an hour after I’d dropped her off, requiring two teachers to restrain her)
  • Obsession with where bathrooms are and frequent urination
  • Fits- that involve extreme rage and violence (only towards us- Mom and Dad and once Grandpa) hitting, biting, kicking really general fighting for her life … screaming ALL OUT lasting 45-90min and at times twice a day. Think of a seizure but the child is awake, she’s literally telling you she can’t control her self while she’s trying to attack you.
  • suicidal thoughts
  • refusal to eat
  • refusal to swallow (even saliva)
  • inability to attend school
  • depression
  • anxiety
  • age regression talking and acting like a baby (not for play during an attack)

Finally the GOD intervention I shared in my post The Eye Cannot See What The Mind Does Not Know

And now we’ve traveled from Charlotte to D.C. to have her tonsils and adenoids removed (while all the way there you ask?) because at Medstar Georgetown University Hospital they know PANDAS…and I could not deal with another doctor or nurse who I had to explain the disease to. A more medically sound reason… we wanted to have the tonsils fully biopsied at a very sensitive lab.

Why remove the tonsils? for us we wanted to see exactly what she was colonized with or caring in her tonsils, this will help the doctors select the correct antibiotic to treat her disease. AND there is good data that shows that PANDAS kids do better post tonsillectomy. Oh and that is what the leading PANDAS in the country told us to do..so there’s that.

So…today we are awaiting her tonsil biopsy… and praying that there is something magical for her in having her tonsils removed.

But, here is what I do know.

She’ll get better

She’ll help others

God is good

God is allowing this

God is in control

And I know people say that kinda stuff about God all the time, you almost get to the point where you are like ahhh people with sick kids have to believe in something.

NO, ya’ll NO… I see God in this daily, and when you strain all your frustration, anger, and sadness through the sieve of “God is good and he is in control” the liquid that comes out the other end is sweet life-giving and it allows you to walk through anything. You feel your shoulders relax and that “I have to do tons of research and figure this all out an it’s all up to me” pit leave your stomach.

Remember this, for those who believe in God this Earth is AS BAD AS IT GETS…and for those who DON’T … this Earth is AS GOOD AS IT GETS.

I hope you will really think about that. I do everyday. It keeps me going, but only because it’s true.

 

 

 

Comments

  1. 1

    Tonya says

    JC,

    Thank you for sharing. You have been an amazingly strong mother and Chris has been the best Daddy a little girl could hope for. This has been a huge deal and you have handled it with grace and courage. I know you want to help anybody out there who may be going through this right now who may be reaching nothing but dead ends due to the less than stellar medical system here in our area. Unfortunately the bigger the city the better the medicine. I pray Greta’s recovery is starting and her flairs are lessening. I get it and I think most people are just thankful you did not stop searching for the correct answer; I cannot imagine how anybody would or could judge. I simply hope I would be as graceful in the same situation.

    Sincerely,

    Tonya

    • 2

      jckonecny says

      Tonya,
      Thank you for the kinds words. I don’t feel amazing, but I do feel carried by the gentle hand of Christ. Your support means so much to me!

  2. 3

    Heather says

    JC,
    Thank you so much for being open to telling your story and Greta’s, I am like you in so many ways that you probably don’t know. I am a wear my heart on my shoulder kinda girl. I am bluntly honest and often feel like I share to much. But then I am reminded that my life is not just my story. It is the journey that I am taking with my savior. The one he wants me to walk through and sometime carry me through. Through all the challenges that I have faced one thing is evident that my savior has always been by my side. And he has made it very clear that he wants to share my story with others. To in fact turn my ashes into his beauty. I know all to well what is like to face health issues and what I like to call a brain disease. I have also seen my own daughter struggle with same thing. Greta’s story has shown me that there could be some thing more to what we are dealing with. Thank you for being so open to listening with your heart and sharing. You never know how big an impact you can have on someones life when you are willing to do the lords work.

    Love
    Heather

    • 4

      jckonecny says

      Heather,
      Thank you so much for the encouragement. So so true! Our lives are not our own. We were created for a purpose. I definitely feel purpose today and most days walking through this difficult time. Thank you for taking the time to read my blog.
      Love,
      JC

  3. 5

    Nikki says

    JC,
    I read your blog and the tears started to flow. Your heart wrenching honesty touched me in a way most PANDAS posts have not. My granddaughter is 6 and has Pandas and Lyme. This has been a long journey as you know and is one without an end in sight.
    Thank you for your honesty. This is something my daughter and I have discussed – “coming out”. I know it is difficult to think people will judge but they will and do. You are a warrior and we are in this fight with you.
    My continued prayers for your family and the medical community,
    Nikki

    • 6

      jckonecny says

      Nikki,
      Thank you so much for your encouragement and kind words. I wish at times I was more private, but that is just not how God made me. My hope is that my open approach will help others find answers or at the very least feel less alone. Thank you for taking the time to read my blog!

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