Her Inner Ear has Life!

So we had physical therapy last week.  On the 14th we received the diagnosis that the balance portion of her inner ear was unresponsive when tested.  At that point - the prognosis was -- there is no cure -- we were going to teach her how to use the other two systems involved in balance to do the best we could to compensate for the birth defect.  The game plan was the same as you would employ for someone who was blind or deaf and you teach them to use the rest of their senses to fill in the spots. 

Upon arriving at physical therapy and answering a battery of questions -- a Much more in depth verbal session than the day of diagnosis. He stated that the doctor had instructed him to put her through the entire battery of tests so that we would have every piece to the pie.  This was impossible to do on the day of diagnosis because the tests done that day already took 3.5 hours.  

We set out on a dozen or more different physical tests that day.  The older she has gotten she has begun to have migraines. We now know from this they are Vestibular Migraines (caused from the inactivity of the vestibular portion of her inner ear).  

The fact that she is even having these migraines means that the vestibular part of her inner ear function isn't completely dead.  She completed roughly a dozen physics tests that all seemed to confirm that her inner ear is there - albeit, barely functioning.  

We were given daily exercises that (in simple terms) removes her ability to depend on her body or vision and Force the inner ear to work a little. Right now the inner ear is a little like the free loading employee who doesn't want to work and always finds a place to hide and lay down while everyone else carries the load.  The goal is to make everyone sit down and cause him to get up and try.   

When doing some of the tests - she had to stand on one foot, or with her feet in awkward positions. With her eyes open she could perform the test to the time goal even though she was wobbling quite a bit.  When the same test was performed with her eyes closed she began to wobble immediately and completely fell over by 9 seconds.  This brought up the fear and she informed us there would be  NO more tests like that.  

Much to my husband's dismay one of the home modifications we have to do is to completely remodel her bedroom with night lighting - furniture to better suit her needs than what we have right now -- and flashlights readily available as night time and darkness has been a huge obstacle full of anxiety for her. 

She struggles with dizziness and vertigo and says that she feels pushed from different angles sometimes.

This is the picture she happened upon and brought to me saying she sees this many times a day. It usually just for a couple seconds. 

We are currently keeping a diary of days she has headaches and dizzy spells and the food eaten immediately before that to be sure there isn't an allergy making things more difficult on us. 

All in all I am very encouraged.  The organ isn't dead  with "no cure" we just have to give it a workout and build its muscles.  This is something the Westover girls have never had a problem doing but this is no ordinary Westover girl!! 😊

Thanks for all of your love, concern, and prayers. 

There are bigger announcements coming regarding this condition but that will happen in the next few days! 😊

FINALLY some answers

Nine years. Over nine years actually.  Piper has always had her quirks. She loves sports- but Hates to play. She has been diagnosed with anxiety.  That's it - this where they stopped searching. Just give her more medicine mom.

Ya only every time she has even come near that stuff we have had traumatic side effects. And that's where the stand off stalls.  They say if I would just agree to double the dose things would be fine.... but since I'm unwilling well they don't know if there's anything else to be done.  Just - Good luck dealing with all her problems mom. We have offered help and you don't want it. BUT YOUR SOLUTIONS CAUSE MORE PROBLEMS THAN HELP!

Then we start having terrible headaches. Go to a neurologist. Abnormal EEG (no clue as to the source but they list epilepsy and don't tell me for six months until I force the records release). Test her for ADD/ADHD she is diagnosed with an attention problem. Here Mom give her this medicine.
No.
"What do you want from us?"

Me: Anxiety and ADD are symptoms and I want you to find the root. I don't just want more medicine.

They all give me the same look.  The look of not really wanting to deal with a non-compliant mom. A mom who is maybe just babying her kid. Or out of touch with how it needs to be treated.

Then at the Neurologist last month. As he is in the middle of writing a prescription I say "Dr. Couldn't this be inner ear?"

He literally put his pen down and said 'what's wrong with her ears?"
Those of you who know me well know that my instant reaction is sometimes not controlled very well. I felt my eyes get big and my mouth drop open and as I sucked in my breath to say "I DON'T KNOOOOW I'M NOT A DOCTOR" I scored a tiny victory and slammed my mouth shut - raised an eyebrow and shrugged my shoulders. When I was more in control, I said "Well if she is dizzy all the time COULDN'T it at least be inner ear?"

So yes - he refers us to an audiologist.

After many very interesting tests, she turned to me with a little excitement and says "This is the LAST thing I ever expected to find.  Her inner ear isn't working. When I test it I get No reading. From either ear. "

So your balance is controlled by 3 things.
1. Your inner ear. (It has two chambers. One for balance and one for hearing).
2. Your vision
3. Your body strength, i.e. feet planted firmly on the ground etc.,

Piper is missing one of those major components. She has to really compensate with the other 2 . There is no cure, and she appears to have been born this way.

Quote from the Dr.
"The sensory signals from the vestibular system are not participating as they should from either ear"

What she has is super rare. While there is no cure there is some physical therapy we will do to help teach her skills to compensate.

We discussed the ADD --- 'Ya- she isn't concentrating. She is trying to stay in her chair!!!'

We discussed anxiety - "sure she has anxiety we as human beings like to be in control and if you knew at any given moment your body could betray you and your next step would be shaky unexpectedly, you'd stay a little freaked out too.'

"This is pretty rare. I'd like to have her back for some case studies on how she reacts to different tests."

And that's when it happened. I started sobbing. So many times, Doctors, friends, family, random acquaintances give you the look .... you know the look. The one they give you when they don't believe you. When they wonder and sometimes say out loud that you are maybe just babying her.  That you're making a bigger deal out of stuff than necessary.  They watch her for a fraction of her life and proclaim "There ain't nothin' wrong with her. She's playing you and she is winning." Or better yet a well meaning someone implies that you haven't prayed enough - or good enough or maybe You have sin in your life .... 'one thing is for sure honey  - I'm about to!"

But you're the one who watches her stare off into space for a split second and you know something isn't right. You're the one who watched her stagger through the house and fall hitting her head one morning.

I look back on that split second when I asked the neurologist  "couldn't it be - inner ear?"  Call it Mama's intuition -- the holy spirit - call it what you want. In that second I proclaimed the exact problem and had no idea.

For that mom who is fighting the medical system and feeling like maybe they are right - maybe I just need to tell her to suck it up... but nothing about that feels right in your heart - spirit - or your gut. Keep fighting  - you feel that way for a reason.

Yes Both of her inner ears are not responding. But they said that was a blessing. If it were just one she would feel like she were constantly spinning and probably vomiting constantly.

Yes this condition causes her headaches.

There are So many questions. Going forward what does this look like. Of course we have no clue right now.  But at least we know what the root of the problem is.  Once you know who your foe is you can battle so much more effectively.

Thank you God for finally giving answers.