Torticollis and crazy medical expenses

It never fails to amaze me just how quickly the day can turn from one plan to another. A typical Monday morning, dragging the kids out of bed, making breakfast and lunches while the girls giggled at the silly birds whistling in the other room. I dropped the kids off at school, then suddenly they turned around. Maddison started to run towards me waving her hands, as Hannah fell behind holding her neck with tears streaming down her face, sobbing. Oh great. Here we go again.

This is the 3rd time Hannah has had this kind of pain. The first onset came back in August, an entire 28 hours after an 8hr long sand volleyball tournament. Hannah was fine until SUDDENLY her lower neck/shoulder area spasmed in pain. You would think she broke her neck in a traumatic car accident. She SCREAMED. PANICKED. CUSSED (like a sailor!! SHE GETS THAT FROM HER DAD!)Hannah wouldn't move. We were right in the middle of a family party and she never came out from hiding. She cried in her room for hours instead. Full tears. We have all slept on our neck wrong or had neck spasms.....and YES, it does hurt and it does spasm alot....but 3 times of this same extreme pain followed by stiffness and inability to turn her head for days? I dont think anything is normal about this.

I'd like to think Hannah is a drama queen, but I always remember when she flipped off her bike in 5th grade. I talked her through the pain, even all through the night. Her arm looked fine. I sent her to school the next day and the nurse ended up calling. Swelling finally set in, so Dad picked her up from school and went to the Urgent care. Fracture. Right there on the xray, plain as day. Maybe she isnt such a drama queen afterall. I win the best mom award for that one! :)

Hannah's second issue with this pain came weeks later. No volleyball involved, and the pain struck just as I was dropping her off for school. I wondered if the weight of her back pack triggered it. Same thing as the first time, though not as severe. Same side. Same generalized area. I took her to the PED anyway. We were referred to a Sports Medicine doctor, urged to stretch before playing volleyball and told to apply ice as needed. Diagnosis, rotator cuff injury. Hmmmmm......

Today for some reason I felt we were looking at something else. Why the sudden onset AGAIN? Why is the pain now on the opposite side just below the base of the skull? Why the dizziness in weeks past? Hannah's was freaking out in pain. Surely this is a nerve thing right? After the first experience with this pain I read about everything from "Impingement" to over use stressors to muscle weakness. The whole base of the skull thing freaked me out. So, we proceeded to the Urgent care.....when they were closed I said SCREW IT. We will go to the ER and hope for a better answer. $150 copay is worth it to ease my mind and alleviate Hannah's pain right? NO. I guess not.

Diagnosis "Torticollis" per the ER doc. Motrin. Ice. Follow up with your PCP in 5 days. Continue to see Sports Medicine. (which we never scheduled because we thought this was a simple sports injury that went away!) The ER doc did manipulate Hannah's neck and show me how to ease the muscle tension. But other that that, I wasted $150. UGH. Hannah's laying in bed. Has been for the last 9 hours. She can't move. I'm one to always believe there is a reason. Sorry, thats just me. I need to rule out everything else before I come to a decision on what I believe. I'm also a googler which means I've been reading about TORTICOLLIS for hours today as I sat with Hannah in bed.

Why do I do this to myself?

"Torticollis (from the Latin torti, meaning twisted and collis, meaning neck) manifests as involuntary contractions of the neck muscles, leading to abnormal postures and movements of the head.1 It is not a diagnosis but a sign of an underlying disease process. Cervical dystonia, spasmodic torticollis, torsion dystonia, and acute wryneck all refer to the same process. Most of the cases presenting to the emergency department present as acute, acquired torticollis, although other congenital and infectious causes as well as trauma must be considered."

SIGN OF AN UNDERLYING DISEASE PROCESS? WHAT?

"Torticollis is also often seen as compensatory mechanism for another disease or symptoms. Patients present with a head tilt to compensate for an essential head tremor or for diplopia secondary to an ocular muscle or nerve palsy. Pediatric patients need a thorough eye examination to rule out a cranial nerve palsy or congenital nystagmus. Persistent neck muscle spasms may require referral to a neurologist or surgeon."

Ok, can we just rule out any weird stuff first? How many times means "persistent?" 3 times? 5 times? A year of disabling pain? What about Volleyball? Hannah missed practice today, and she's very upset about it. This girl lives and breaths Volleyball. How long do I let this go before I insist on a better answer? I did get an appointment with her PCP, but I already know it will be useless and a repeat of the last visit. Ugh. Its so frustrating when as parents we have to rethink everything for the sake of our kids health.

Medical expenses......last month Josh and I were looking forward to open enrollment for his employers insurance. We were sure a different insurance plan would save us tons of money. Looking over our options the other day, I decided we might as well sell our damn house and live in a shack. Looks like cost has once again increased while benefits decreased. There isnt one insurance plan option that covers "name brand" RX's at any level. Nope. NONE. Our copay for "name brand" strips and insulin remains at $160. Is that freaking ridiculous!!?? Test strips x's two. Insulin x's 2......OUCH. Then there is the DME that isnt any better. DME is covered at 60/40. Times two. Two insulin pumps. I guess I cant complain that THIS time there will not be a max for DME. That is a huge relief. BUT, our deductible went up to $900 per family from $300 on this "superior" plan. Apparently they think unlimited DME makes a "superior" plan. ACK! Our expenses only get worse each time enrollment comes around!

In this past week alone Maddison went to her Endo on Tuesday at $40. GI specialist on Wednesday at $40. Therapist on Friday at $40. I went to my PCP for a potential blood clot at $30. Then to the ER for an ultrasound at $150. Then today Hannah went to the ER at $150. OUCH OUCH OUCH. The future shows an outpatient scope biopsy for Maddison at $300. Sports Medicine visits for Hannah twice a week at $40 bucks a pop. Dental visits for us all, test strips at $160 needed YESTERDAY, and CGMS on the way from Medtronic which will top $450. Healthcare expenses are overwhelming in this house. CRAZY. It makes me want to hide.

You may not hear from me for awhile. I think I'm done blogging until I have something nice to say. Seriously. Until then, I will just keep swimming. Just keep swimming.