Sunday, June 28, 2015

what is wrong with Paisley?!

So since last July (about every 3-4 months: July, December, March, June) Paisley has been having these weird spells where her eyes get large as if she can't focus, her neck locks on the same side and tilts, her upper body tenses and shakes just a little, crying she complains of her head hurting and not being able to open her eyes, and sleeps it off for a few hours waking up here and there and sleeping again (lasting for anywhere between 4 to 7 hours).  They are horrendous, heartbreaking, nerve wrecking, scary...simply put A WHIRLWIND OF SOMETHING UNFAIR HAPPENING TO OUR LITTLE GIRL.

Well this past Saturday as the girls and I were walking back to the car from watching the Strawberry days parade (Nate was at work, just gotten home and was cleaning up so we could go look at houses with his brother/sister-in-law/their kids)...when Paisley told me her head was starting to hurt and I looked at her and saw her neck starting to fall, I picked her up (while trying to push Emery in the stroller) and clenched on to me so hard and started having one of her episodes.  I got scared and nervous but I was told when she started to have another one I needed to have her seen right away so we could get the process going quicker.  So I put all the girls in the car (all 4 of us crying...Adey scared, Paisley in pain, Me just over whelmed and hurting for my little girl, and Emery was either hungry or just feeling left out).  I called Nate and told him I am sorry we can't go look at houses, we are headed over to the ER for Paisley.  He said ok, called his sister Kimberly to see if she could give him a ride so we would only have on car there and to take Adey so she wouldn't be stuck at the hospital having to watch Paisley go through this (we feel so blessed from her help...Adey had a good time getting to get wet, play outside, eat pizza, watch the Chronicles of Narnia...all what she needed to take her mind off of what had happened earlier...thank you Kimberly and Stephen).  We got checked in, put in a room and let the doctors/nurses do what the needed from different tests and questions and monitoring.

Poor baby had to get a CT scan and blood drawn and IV bag of fluids and they tried a catheter (poor baby it didn't work)...she went through a lot but at least it helped with a few things to rule out which came with great results (no Tumor or other scary things)

Paisley's dad and stepmom (Stacey) met us to keep her company and keep her calm.  She loved having them there.  As we were leaving Jeremy and Livia (Nate's brother and sister in law) met us in the lobby with lunch from In and Out...we were soooooooooo hungry (it was so nice of them...we inhaled it quickly to say the least...thank you guys).

This is from when we got home and she was coming out of it after a long afternoon.  She got a special Eiffel tower blanket, a Popsicle, my little pony coloring pages/crayons, and a sparkly crown from the AF hospital/ER and an Ariel doll to snuggle with, Carls Junior (she calls them star cookies), and cartoons in our bed from us

We left the hospital thinking Paisley had "partial complex seizures" 

http://aptiom.com/the-condition-overview.html?utm_source=bing&utm_medium=cpc&utm_term=partial%2Bcomplex%2Bseizures&utm_campaign=BS-Unbranded-General

HOWEVER...

We were given/referred to two different pediatric neurologists and we chose one in Draper who was just fantastic and got us in right away (symptoms happened on Saturday and referred the same day by the ER doctor who left messages on voicemail with both places, called them first thing Monday morning, and was able to be seen Tuesday morning...such a blessing).  We were told these places were hard to get into right away unless an emergency (which we were told ours was urgent).  So we (Nate came with us and Adey went to her cousins house) went to our appointment, filled out the paperwork, met the doctor and explained Paisley's symptoms.  She told us she doesn't not think Paisley has the signs of any form of seizures (such a RELIEF).  

Well folks after the visit with the Pediatric Neurologist...this is what Paisley was diagnosed with:

https://en.wikipedia.org/wiki/Benign_paroxysmal_torticollis

Benign Paroxysmal Torticollis...her treatment is ibuprofen or Tylenol, caffeine, and a dark/quiet room so she can sleep it off.  What sets them off...we think either dehydration or heat.  If they become more frequent, the treatment given doesn't work, or she shows new signs then we are to call back the neurologist and have further tests done but for now we are in the clear and free to go.  I am really hoping, as a mother of this little girl whom we just adore and love so much, this helps it and they ease up some but sadly we were told the migraines are here to stay but she will eventually pick up on the signs of one coming on and can treat it before it gets too bad or at least learn how to handle it as it is happening so its not as painful.  





1 comment:

  1. Not a fun diagnosis, but hooray for a diagnosis! I'm SOOOOO glad they ruled out seizures. Happy dance! Here's to lots of yummy cold things to drink and fan spray bottles. ;) We love you, Paisley! You have awesome parents that are figuring things out!

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