Friday, October 9, 2020

A mystery diagnosis...AGAIN

A few months ago my oldest daughter woke up with numbness in her arms and legs.  My concern increased when this continued for weeks.  She started having increased anxiety, including panic attacks, social anxiety and sensitivity to sounds.  At first I thought that the increased anxiety was probably related to the isolation due to COVID and being stuck at home.   She started having symptoms that seemed a lot like OCD to me.  She needed a lot of reassurance and had an excessive amount of guilt.  She became worried about her weight and if she was exercising "enough" and worried if she was eating too much.  Seemingly normal things that a teenager might face but this was very unlike her.  Then suddenly, a few weeks ago things really escalated.  She started having intense pressure in her head, in fact she thought it was her ears.  We went to the ENT only to find out that her ears were fine.  The next day she woke up and couldn't swallow.  Food from breakfast got stuck in her throat.  She also had numbness from her hands to her shoulders and from her feet to her hips.  It was hard to walk, she had to really think about every step she took.  Her hands were constantly trembling, so much that she couldn't hold a pencil to write or draw.  When she told me her vision was also blurry I took her straight to the ER. 

Not surprising to me the ER completely dismissed us.  They were not even concerned about the food stuck in her throat and said they weren't really sure what was wrong but "it was probably due to stress."   They sent us home.  Three days later she had an endoscopy that showed she was getting food stuck in her throat and that her swallow was very weak.  The GI doctor we saw mentioned this was strange because usually you don't just loose swallow function overnight.   We had an endoscopy later in the weak and I was grateful that it was normal and she has no disease in her stomach that was visible. We did an MRI of her head and spine to rule out MS and cancer.  Everything came back normal, this was great news of course, but didn't explain what was going on with my daughter.

She went from being a 4.0 AP student to struggling to process information, to not being able to remember things that she's always known.  The things that have always come easy to her are now extremely difficult.   The things that she's always loved and is extremely talented at:  drawing and writing and being creative--she couldn't do at all.  She wasn't able to read because she couldn't process written information.  She needed to have the captions on the TV so that she could try to read and listen to understand movies.  Any sound especially an unexpected one, like a pan dropped on the floor or the dog barking sent her into an instant panic.  

The past seven months have been very trying for her and I.  It has been so difficult to watch her struggle.  At one point she became very sad and told me that she is worried all her friends will go to college and she will be left behind because she cannot "think" anymore.  Honestly, she has shown such resilience through all of this and she has worked so hard to keep her hopes up with all that she is going through.  I honestly cannot imagine what it would be like to loose skills that I take for granted like reading and writing.  I cannot imagine as a teenager, having to stop school (which she absolutely loves learning) because my brain would not allow me to process new information.

Just a week ago we finally sat down and spoke with the immunologist and he explained that she has PANS.  Basically her brain is on fire.   Instead of her immune system attacking a virus, it is attacking her brain.  PANS stands for Pediatric Autoimmune Neuropsychiatric Syndrome.  It is unknown what triggers PANS, but it is typically set of by metabolic issues, infections, or other inflammatory processes.  

Thankfully we have a great team of Doctors and my past experience with my other children has taught me what a huge role nutrition plays in healing the gut and body.  We have started the AIP diet, antivirals and antibiotics and are already seeing some improvements.  I hope that we have caught things early and with the proper treatment we will get our daughter to a place were she can attempt to be in school again.  I think that is the most difficult part, this is her Junior year and she was learning to drive before all this began.  

I hope that sharing our PANS story will help others identify symptoms sooner so that you can get the quickest diagnosis and support for your child.  Please reach out to me if you have any questions or need support finding a provider who can help treat your child.   

Saturday, February 2, 2019

Why Jujitsu Made Me Cry

I always wanted to excel in sports.  My Dad's job relocated us to a small town when I was a Sophomore in High School.  Being that no one had moved to this isolated town in over a decade; I was the "New Girl" for the entirety of my High School career.   I joined the Volley Ball team in an effort to connect with others.  I showed up every day for practice and worked hard to prove myself.  Yet the coach never played me.  I was too respectful to ask him why.  I figured he would put me in eventually but the entire season went by as I sat on the bench.  I never missed a practice and I gave it my all through the whole season.  Determined to use the same drive and passion that I would have applied to the sport; I focused my efforts on cheering on my team members.  I decided that if my coach was being unkind by keeping me on the bench, then I would be the most kind, the most cheerful, the most positive person on that team.  And so I worked at it.

The coach never said anything to me that whole season, good or bad.   He never told me why he didn't put me in the game.  Even though I never quit, the fact that he never played me, left a scar. 
From then on, I never believed I was cut out to play sports.  

At thirty-nine years of age I began Taekwondo in order to "support my kids."   I didn't have any goals or expectations attached to it.  Then something strange happened. Since the sport continuously challenges you to perfect moves and to work toward goals, I fell in love with it.  Taekwondo became mine.   Incrementally, I made improvements.  Things that were exceptionally difficult for me in the beginning became easier over time.    

Enter Jujitsu.  I never would have even attempted something like this if I hadn't made the progress that I did in Taekwondo.  I saw Jujitsu as a new challenge.  A way to push myself a little bit further, harder and past my physical boundaries.  Today when we were working the drills I started crying.  It would have been easy to blame the tears on the pressure I was feeling from being locked in an arm bar.  I would have been lying.  I got into a position where I felt trapped.   I could hear everyone telling me what to do, but I couldn't materialize it.  I was pulling away, they were telling me to lean in.  It felt like I should try to escape the grip of my opponent, but I needed to get even closer to her.  

Sometimes life puts you in an arm bar.  We get pulled into something hard.  The pressure of your situation is so uncomfortable, it's pulling you down and you just want to get away.  You want the pain, the difficulty, and the struggle to just go away.  So you fight against it.  Yet the more you fight it, the more it pulls you in and capitalizes on your weakness.  

When I resist what God is doing in my life: when I fight against Him, when I focus so much on the "Why",  I forget the Who.  I want answers and I want them now.  I research, work and struggle to try to fix things on my own.  I try to control by pulling in my direction against the pressure, but God has me locked down in an arm bar and I'm either going with Him or ripping off my arm.   In my quest to know "Why," I forget to lean into Who God is.   He loves me and He ultimately has my best interest in mind.   He is near me and walking with me through whatever the struggle is.  

When my opponent let up and released me the emotions instantly overwhelmed me.  It took everything for me to not just start sobbing.  Here is what was really going on.  I was telling myself, "I can't do this.  I'm not good enough.  I'm not an athlete, I've never been one and I never will be.  I'm gonna get killed out there."  

Then my coach made me do the same drill again.  This time, he had me lean in to it.  So I did, I went with the pull instead of against it.  I pushed hard into the pressure and forced myself into it rather than fighting against it.   Do you know what happened?   I got out of the arm bar, but it took me driving hard into it.

Sometimes being strong isn't what God is looking for.  He's looking for us to lean into our weakness and into our fears.   He wants us to stop resisting what He is trying to do in our lives, and stop fighting against Him.  I know it's natural to pull away and ask "Why?  Why are you allowing this into my life?"  "Why won't you just answer my prayers?"  Yet when you lean into the struggle, you get closer to Him; you feel Him next to you, and then He can guide you where you need to go.  

I could have lied to my peers today and told them that my arm just hurt.  But it's more than that.   Even though it's hard, being vulnerable with my team, my friends, and my peers, is the start of letting go of what's holding me back.  This mental hang up that I have to be perfect at everything is holding me back.  I've been breaking it down, but it pops up and try to suck me back in, as it did today.  "I'm not good enough," taunts me when I struggle.  Does it do the same to you?   When we verbalize this out loud and we are vulnerable with each other, then the limiting words loose their power over us.  If when we feel this way and we say it, then there's no longer shame in it, because it's normalized.  

It's time to overcome friends.  We do this together, by being vulnerable, by leaning in to the hardships, and by believing in our true identity.  

When I was locked in that hold, it all came down to the fact that I still do not really BELIEVE I am an athlete.  Even though I've worked hard and I am now physically fit and strong; I don't live in light of how far I have come.  In my mind, I'm still stuck on the bench, not accepting that this strong woman is the real me. 

In the same way, when the struggles of life are pulling me down; When they threaten to destroy me,  do I remember WHO I am?   

I am a child of the LIVING GOD.  

What if we begin to live in the power of that statement?  What would change?

When everything else seems out of control, I have to remember WHO.  WHO He is and WHO I am. 

God isn't finished with me yet and He's not finished with you.  Thankfully, He's given us a lifetime to learn how to lean into Him.  


"For momentary, light affliction is producing for us an eternal weight of glory, far beyond all comparison."  2 Corinthians 4:17