Where did time go?

Harper is 9 years old today!  How did we get here so fast?  I am sure that next year when she hits double digits I may have a breakdown.  My first born is so far from a baby these days yet it is so easy for me to remember those first days, months with her in my arms most of the time.  She is so tall now that when Dayle carried her into the house today after she fell asleep in the car, her legs were dangling past his knees.  She amazes me everyday.

It's Official!

Just got the call from the neurologist.  All of the tests show that she has narcolepsy, so she has a diagnosis.  She has the genetic marker that 20-40% of the population has but most don't develop narcolepsy.  She fell asleep on average 1.6 minutes after laying down during the daytime nap test and she fell into REM sleep 3 out of 5 of the naps.  That was a shocking statistic.   I mean I watch it happen all the time but to hear that in less then 2 minutes she can fall asleep, that was crazy. 

The good news is that she did not have any signs of obstructed sleep apnea so we won't be going through a surgery to remove her tonsils and adenoids.  That was a relief and she even smiled when we told her that news.  She does snore and talk in her sleep though but those are minor concerns.

So what now you say.  Well she is going on a low dose of  Provigil which I am happy to say is not a stimulant like Ritalin or Adderall or an anti-depressant.  Well it is a stimulant but it has minor side affects, is not habit forming, and seems to be highly touted for staying alert and awake during the day.  She is going on the lowest dose and only taking one pill a day. 

Strangely nothing seems different.  I mean I wasn't shocked by the diagnosis.  I would have been shocked to hear it wasn't narcolepsy.    It will be trial and error from here on out though as far as medication goes.  Here's hoping it works.

A quick description

I have been trying to find a good video describing what she goes through and this is really close.  It does a good job of explaining what is happening in her brain to cause this as well as show what cataplexy looks like. 

 

Sadness

They're not here tonight, Dayle and Harper.  They are are Kennedy Krieger Institute for her sleep study.  I wanted him to take a picture of her when she first was hooked up but she was so miserable he didn't want to upset her more. She has been stressed over this for days and we were both unable to convince her that it was probably the easiest test she will go through.  It's 24 hours. It's not needles or a watch that she has to keep on for a week.  But she was so bummed by the thought of going that there have been a whole lot of tears the past couple of days. 

My thoughts have been with her all day and I have been a mess inside.  I'm just sad for her at this point.  Sad she has to even go through this, sad that I can't be there, sad that she is so sad, sad to hear her say "Why can't I be normal?"  I have been doing a lot of holding her as she cries and gets it out because I don't feel like I have any more words or that what I have to say is working.  

Today was picture day at school. I really hope she was able to summon up a smile.

Day and Night

The difference in her week days and her weekends are astonishing.  We have had such a good week.  The napping schedule is really making a difference in her ability to stay awake in the evenings.  Some how that one hour really helps her get through her day at school and then in the evening as well.  But for whatever reason her weekends are so out of whack. 

Well I can guess the reason.  She gets up and watches TV as she has always done on Saturday mornings, but an hour into that she is ready to sleep. We have to schedule things into our day that are just to keep active and moving.  Not that we can't all benefit from it but it is just an adjustment. But what's another adjustment.  If we don't do it she ends up spending her day in and out of sleep.  Then it throws her nights off and she becomes an insomniac. Tuesday night she claims she was up from 9-4.  I'm pretty sure she was in and out of sleep all night but she thinks she was awake the whole time.  Whether she was or wasn't, I just keeping thinking how that has to affect her mentally. 

We went to a party Saturday and she played  from 11:30-3:30. Riding bikes and scooters, playing basketball, jumping in the moon bounce.  She had a blast.  And she took a 3 hour nap afterward.  It wiped her out. I would think that school  would do the same to her. 

So I wrote all of the above paragraphs yesterday but today I had a thought that I really hope to be true. I think she may have come out of her funk, depression even but I'm not sure if she is just having a good week.  I really hope this is a turning point for her as far as her attitude goes anyway. But then again, maybe she has just slept well the last couple of days.

Heartbreaking

"I so sad after my nap."
"I'm afraid to laugh because I don't want to fall down."
"I don't like my personality now."
"I'm so angry all the time."
"I was too embarrassed to tell the substitute I needed to go to nap."
"I don't want to yell at him but I can't help it."
"My legs aren't working right."
"I'm not going to play because I might fall when I run."
"Can people look at me and tell I have this?"
"I'm trying but I can't make my eyes open."
"Am I going to get this when I turn 8 Mommy?"
"Why did this happen to me?"

"Well at least I'm not going to die from this."
"I'll keep an eye on her."
"I'll catch you if you fall Harper."
"I'll be right next to her."
"Your right Mom, I feel much better when I'm not thinking about things."
"I went on the confidence course and the zip line 4 times!"
"It could be worse. At least I'm not in a wheelchair."
"My friends don't treat me differently and that's all I care about."

Even the good stuff breaks my heart.

It came on so quickly.

It was hard to hear that something was changing within my little girl. The little girl who walked at 9 months old, spoke in complete sentences at 18 months, could read at 4 years old, looks like an 11 year old but not yet 9. She has always been ahead of the curve in every part of her life. And then suddenly, almost overnight, we are planning our schedule around naps, staying close to her or holding her hand when walking anywhere, helping her up when she stumbles to the ground, calming her down from tantrums about wanting to sleep or not wanting to sleep, and keeping an eye on her every move. Sounds like I am talking about having a toddler in the house again. Actually, I am talking about her recent diagnosis of narcolepsy with cataplexy. Cataplexy was a word I had never heard of two months ago. But then again two months ago I didn't have a child with a disability. That is how fast this took over her life. Took over our life.

It started when she went to horse camp for two weeks and fell hard asleep each day in the car ride home. I thought nothing of it since she was spending 8 hours in the summer heat working hard, taking care of horses. But the week after camp was over, she slept every day for about 2 hours and at random times. Laying on the floor reading a book, I found her asleep. Getting in the car it was automatic that she would fall asleep. The next week she staring saying that her legs were feeling weak, especially when she laughed and it made her start to fall down. Within a day or two, she was falling down every time she laughed, although it is hard to call it a laugh for there was no longer any sound coming out when she laughed. She was really bothered by this, understandably, so we made an appointment with the pediatrician thinking her enlarged adenoids and tonsils the dentist had mentioned back when she was six, might be affecting her sleeping at night. The doctor didn't think so but said wait until she gets back in school and we'll see how she does and she had no explanation for the falling while laughing.

So the first week of school comes and she fell asleep two of the days as well as reported more frequent episodes of falling.  The final straw came on a Friday when she was in line coming in from the playground and fell after laughing at a friend.  She said she was so embarrassed that she lied when everyone asked her what happened and said she tripped.  We went back to the pediatrician in the middle of the hurricane.  This time she starts talking about neuromuscular disorders- muscular dystrophy, MS, and says she wants us to see the pediatric neurologist at John Hopkins.  Are you for real?  How does this just happen?  But I had done a little research myself, doing the stupid paranoid Mommy thing and looked up her symptoms online.  I asked the doctor about narcolepsy and she paused then said "Oh well if this is narcolepsy then that is much better than the other things I was thinking it might be."  So the next thing I know she is calling me a couple hours later and says the pediatric neurologist at Hopkins wants to see Harper and if the Governor doesn't proclaim a state of emergency due to the hurricane, to go at 10:00 the next morning.  We travel up a very deserted and debris filled I-95 to Hopkins and meet with 4 various levels of doctors from the student to the attending. But never got to meet the guy we went to see because he had a tree fall on his driveway.  He did consult over the phone and that is when we were given the official diagnosis.  My daughter, husband, and myself sat in a huddled ball of tears for about 20 minutes while waiting for discharge papers and a recommendation to visit the Sleep Clinic at Kennedy Krieger Institute.  But that, and a print out from the NIH website with all the details about Narcolepsy were all we walked away with.  No directions or bottle of pills that would help instantly. 

So a month later, we have a longer list of symptoms plus too may hours on the Internet teaching ourselves about this so we can understand her future and help explain to others what is now going to be a lifelong disorder. I kept a daily log to take with me to Kennedy Kreiger Institute as well as purchased a FitBit which is a pedometer that also tracks your sleep.  It tells us what time she falls asleep, how long it took her to fall asleep, how many hours she was in bed, and her total sleep.  It also shows the number of times she woke up over the course of the night.  First night was a shocking 57 times but in the 2 weeks she wore it before seeing the neurologist the highest number of wake ups was 86.  Can you even imagine that?  Even on my worst night with an infant nursing, I'm sure I was able to sleep more than my poor sweet girl is sleeping right now.

The next steps are to wear an official monitor 24 hours a day for 2 weeks, have blood work done, and do a sleep study.  Apparently we are working with the best possible Neurologist so I am thankful for that.  The plan with school is to have her nap for an hour a day.  We bought a camping cot and she goes to a quite place for one hour then wakes up to an alarm clock and goes back to class.

All of her friends and ours have been so supportive. That has been the one of the most amazing things about this.  I have always know that the company we keep are quality, caring people and each time we have told this story, we have been shown so much love, honesty, compassion, and offers of support whenever needed.  Thank you all for your help, love, and kind words.  We are all struggling with this of course but doing apparently all that we can at this time according to the doctor so that makes us feel good.  I just know that there is a lot more work to be done.