Sunday, September 10, 2017

A Diagnosis and a Thank You

It was a year ago things started changing for my little girl.  It was back to school time.  First grade was exciting and she was loving her new teacher.  Then it happened.  I started getting phone calls from the office.  Olaya was complaining of headaches.  She was falling asleep in class.  I noticed as she would walk her steps were different.  It almost looked like she was having to drag her feet.

After a summer of sleeping in, naps when wanted and no real routine, my first thought was that she was having a hard time adjusting to all day school and the new schedule.  I was reassured even by the principal that her own first grader was taking naps after school.  The problem was that she wasn't just taking a nap.  She was going to bed.

Right away I got her in with her primary care doctor.  I was told to give her a cocktail of benadryl and ibuprofen for her headaches along with adding a vitamin fortified with iron to her daily routine.  The truth is the doctor didn't know what to tell me and felt she was okay.

The headaches got worse.  At six years old she was having full blown migraines.  A couple times a week I was getting calls from the school that they needed me to come over and give Olaya medication. Eventually they let me leave medicine for her and the principal would just give it to her with my permission. It was getting very difficult for me to leave work each time she had a headache.  

Olaya got home from school at three and would promptly fall asleep.She slept from then until I woke her for dinner around 6.  She would stay awake long enough to talk for a bit, eat dinner, take a bath and then be ready to get back in bed at 8.  Some days we tried to fit in her singing or dance class.  That was a nightmare most weeks.  She would fall asleep in the car and be very angry when I woke her to go to class.  Again I went back to the doctor and this time with a new pediatrician but at the same clinic.

This doctor did more blood work.  She seemed to be more invested in what we were experiencing but overall her answer was to give Olaya a medication for the headaches and a medication to wake her up, speed.  My thought was and has always been that I am okay with giving a child a medication if I know what it is for.  I am not okay with giving a medication to mask a symptom and just see how it goes.  I left that day with the prescription for a "headache medicine" only to learn from a specialist we saw a few months later that what she prescribed was actually a medication that was used to help with sleep.  I never filled the prescription.

I wasn't okay with giving Olaya this medication as the doctor couldn't give one reason why she was having headaches.  As I left the clinic that day I went straight to my chiropractors office.  He got Olaya in and right away found the cause of her migraines.  Within three treatments she was migraine free.  To this day Olaya will let me know when she starts to get tight in her neck and feel pain so that I can get her in.  Truthfully, she doesn't like the process of "getting her neck popped".  However, she does know that it brings her relief and prolongs the time she is pain free so she is now happy to see our chiropractor, Gary Johnson.  I am happy to report that since those first couple of visits, Olaya has not had a migraine.  She does get mild headaches on occasion.  We see Dr. Johnson as needed, typically once every three or four weeks.

A week or so later the pediatrician called to see how things were going now that we started the "headache" medicine.  I explained about seeing a chiropractor and she became hostile.  She told me a child should never be adjusted and that chiropractic care for kids can lead to stroke.  I explained I was surprised she was more eager to provide a medication, give my daughter chemicals, than try a natural treatment.  It still baffles me.  I keep finding that the medical profession just wants to push pills. . . for everything.  

Long story short I was frustrated.  By this time I had met with three different pediatricians from this same clinic. Each one dismissed Olaya's symptoms.  Each one wanted to address each symptom as if it stood alone.  They told me none of these things were related.  Eventually Olaya created a work around for her sleepiness in class.  She learned to become hyper or stay always moving so that she wouldn't fall asleep.  At my final consult with the third pediatrician she told me it sounded like everything was working out for Olaya when I told her she had figured out to ways to stay alert by moving around.  I asked how that could possibly be a solution.  It certainly wouldn't be for her or I.  She said that as long as Olaya was doing well in school and this wasn't hindering her life then I should just be okay with it.

The thing was, this controlled our life.  I was missing out on time with my daughter because of all the sleeping she was getting.  If she had a dance recital, we arrived 45 minutes earlier than the suggested time so that Olaya could curl up on a row in the back of the auditorium to nap and wake only in time to go on stage.  When we traveled to an amusement park Olaya would fall asleep standing in line and instead of laughing and frolicking on the rides she was fighting to keep her eyes open.  One time she fell asleep pushing the shopping cart in Walmart.  I turned when I saw the cart go flying down the aisle and saw he collapsing to the ground only to wake up when her head hit the floor.  Nothing about any of this was normal. That was the final straw for me with the pediatricians.  They were not listening.  I had questions and they didn't have any answers.  

It was then the pediatrician offered to put Olaya on a stimulant medication.  Again, I am not okay with prescribing a medication when we don't know what it is we are treating.  I asked if we could see a specialist.  I asked if we could get another opinion.  Again the doctor suggested trying a medication and see what happens.  Again I demanded to see a specialist.  She reluctantly suggested seeing someone to do a child sleep study.  However, she sad I would have to go to Salt Lake and that they are very expensive.  I was dumbfounded.  She was actually trying to persuade me against quality medical care because I would have to drive a couple hours and that it would cost.  Those are both things I get to worry about.  First, Salt Lake is not that far away and second, my daughter has double coverage between her dad and myself.  I took the referral and made an appointment.  

A few weeks later we saw Dr. Safi at Primary Children's Hospital.  Although I was reluctant to have high hopes, he squashed my fears within minutes.  He listened.  He listened for quite a while.  He shared with me that when his office requested Olaya's file they sent a copy of the chart notes from out last visit and all it said was "Mom in again with concerns of her daughter being tired." SERIOUSLY!!!

Dr. Safi got to see first hand how quickly Olaya would fall asleep.  He had her up on the exam table.  He was asking her questions and she was alert and responding.  He turned to me for a couple of questions and within a few moments when he turned back to Olaya she was asleep.  Even he was surprised at how quickly she was out.  

He requested new blood work, discussed a few ideas with me and scheduled Olaya for a full night sleep study and day napping study. He was confident he would find some answers in the study.

So, here we are.  I decided not to do the study during the summer (although looking back I should have just done it as soon as possible). I waited for school to be back in session and Olaya be on a regular sleep schedule.

We made the trip down to Salt Lake City on a Tuesday afternoon.  We knew we would arrive.  They would get her hooked up to a bunch of sensors. They would monitor her through the night.  They would monitor her through five nap studies during the full day of Wednesday.  

Arrived at Primary Children's Hospital for 8 PM check in.
 When we arrived at the hospital we had to walk across this connecting hall to get to the sleep lab. I saw my little girl, with her favorite pillow, embarking on a journey as she walked that hall.  She has such a brave spirit.

Home for the next 24 hours. Olaya got to keep the blanket.

And so it begins.

It wasn't until the technicians started hooking Olaya up to the sensors that I truly knew the fear Olaya was experiencing.  She had asked me the typical questions. What are they going to do?  Will it hurt? What do I do? How long do I have to do it?  When can I go home?  I answered all her questions as best I could.  She seemed okay with it all.  Then it happened.  As they were placing the sensors, Olaya said, "I am going to be sick."  I jumped up and got the garbage for her to use.  My poor little girl was holding in some emotions until they all came spilling out.  Once that was over she said she felt much better.  The technicians were awesome.  They were kind with her.  She settled down and the placement of sensors continued.

Almost done.

How do I sleep with all this?

Even with this thing up my nose?
 I will say the study went well.  She didn't have a problem sleeping in a strange place.  She never does.  On the other hand, I didn't sleep much at all.  By morning I was welcoming the technicians coming to wake her.  Unfortunately construction starting at 6 AM in the office behind us woke her first.

This girl never loses her sparkle.

First nap.

All done.

Heading home.

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