Just finished... This book was truly eye opening to me as I have experienced narcolepsy second hand to my 5 year old who can only explain things to me as he feels and understands. Author Julie Flygare made it possible for me to have an inside look of what my little guy is feeling in his head and I can't thank her enough for this. Really it's a great read for everyone.
Julie Flygare is a narcolepsy advocate.  She has made many helpful and insightful videos to the world of people with narcolepsy.  She also has a blog and a Facebook page with lots of information and new updates.  For more on Julie's experience living with and advocating for narcolepsy visit http://julieflygare.com/

Cataplexy Video

I have had alot of people asking about Cataplexy so we put together a small clip of van's cataplexy attacks. Before treatment he was having these 15+ times a day (triggered by laughing). His cataplexy ranges from barely noticeable face drooping to complete colapse. 

A Very Emotional Week.
It's been a long hard week for us as reality is setting that we will most likely never have the same little boy even with meds. We had a great day on Tuesday, actually we haven't seen Vand'n that happy and himself in months. We took full advantage, dad took off work and we went St. George to the splash pad. I got my hopes up:(. Wednesday morning we woke up to his heavy eyes and angry heart. Everyone has to walk on egg shells around him and make sure everything is done and said perfectly to avoid his rage. I feel like our family is straining to just maintain survival.
If we go out people look at me like "control your child", Or we are packing a very big (70lb and really tall) 5 year old sleeping boy, along with our 2 year old and the 9 month old baby. Luckily we have Denim (our 11 yr old) to help with the younger ones. Easier to just stay home.
We did get in contact with another mom who has a son with very similar traits of narcolepsy. It was so great to hear from her and know that there is someone who knows what we r dealing with and that we can ask questions. We hope to find others. So please help us spread the word and if you know anyone who has young children with Narcolepsy please send them our way.

After 6 weeks of being on medicine for his narcolepsy. We have these sparkly eyes a lot more lately. While his medicine is in effect at night he doesn't have night terrors or hallucinations. His cataplexy attacks are decreased to a couple a day (they were 10+ times a day). He still falls asleep 2+ times a day, but they are much shorter naps. He is experiencing multiple side effects from the medicine like; being angry and very violent, he seems a little depressed, and he is not quite himself. We are debating whether it is worth continuing the medicine much longer. The Dr. And the pharmacy nurses tell us that the higher doses and the longer he is on the medicine the less the side effects get and what doesn't go away they said we could treat with other meds like anti depressants and/or stimulants. We don't feel that treating the side effects with more drugs is the right answer we feel that it's just causing a vicious cycle and we don't know how long we can actually hold out before we look for a different treatment option.
On a positive note we are so grateful that it wasn't something life threatening, life altering yes, but it could have been so much worse, and at least we still have him here with us and we can learn to deal with his narcolepsy step by step. We know our Heavenly Father has great things in store for him and that he loves us all so very much and he will help us through. We also have the love and support of so many family and friends that will help us in anyway that we need.

In late October- early November 2012, our 5 year old son, Vand'n started sleeping during the day quite frequently despite his normal 10-12 hours of sleep at night.  He had not been taking naps for a few years, so this was out of character for him.  At first we thought it was funny and cute, so we took a pictures and frequently would post them on Facebook when he'd fallen asleep in some weird spot.  We thought he was growing and needed the extra sleep, but week after week of sleeping more and more frequently, longer periods of time, and in stranger positions and places.  We knew there was something more than a growth spurt going on.

Van had slept through the night from the time he was 8 months old, but suddenly he started having bad dreams and coming into our room.  The dreams progressively got worse with time and they turned into night terrors.   He thrashed around in his bed, talking, and acting out the dreams.  Many nights a week ending up in our bed the rest the night because he was to scared to go back into his bed.

By mid-January his eyes had changed they had lost their sparkle, they were always dark and droopy looking.  When he was particularly tired he could hardly hold them open and you could barley see half his pupil.  This scared me more than anything else.  I tried to get a picture of them so I could show it to the Dr. but Van became self conscious so I stopped.  I have a few attempts but I was never able to get a great picture.

Vand'n started to look different when he laughed we thought it was maybe an awkward stage of his life.  He started falling when he would laugh hard or say something he thought was funny.

In February 2012 we decided to see our pediatrician to get blood tests to either diagnose something like mono or anemia, or to rule out that stuff from the start.  They did a full panel of tests and everything came back normal.  We met with the Dr. 2 weeks later to discuss other possibilities.

Van keeping entertained while we wait

His recommendation at this point was to see a sleep specialist and do a sleep study.  He called around and finally found a specialist who he felt comfortable sending Van to.  He pointed us north to Dr. Pfeffer.  Six weeks later we went up for a sleep study, and a followup appointment the next day to hear the results.  We arrived to the clinic at 6:45 pm on 3-27-2013 for Vand'n's sleep study.  Vand'n got all ready for bed and they hooked him up with all the electrodes and went to sleep.

 The tech woke us at 5:00 a.m.   She took off all his electrodes and we left the clinic.  We returned for our  appointment with Dr. Pfeffer at 2:00 p.m.  They took his weight and temperature, asked if he had a Flu Shot this year, I said "yes",  and we waited for the Dr.   She came in and went over the Sleep Study Results with us and showed us what was normal and what wasn't.  She asked some questions and told us that she thought Van had Narcolepsy and she believed that the H1N1 vaccine had triggered it.  I argued that he didn't have the H1N1 he just had the flu shot.  She had already pulled his records and said it was given to him in with the flu shot that he had in September.  She said that we needed to do another test (the MSLT test) to confirm, but that she was pretty confident that Narcolepsy was what we were dealing with.  She wrote down lots of things for us to research and we talked about different treatments that were available if this was what we were dealing with.  We were in shock.  We mostly listened and tried to understand.  We headed home, it was a long 3 1/2 hours.
  It wasn't till after we met Dr. Pfeffer that we found out about Cataplexy (Cataplexy is a sudden and transient episode of loss of muscle tone, often triggered by emotions such as laughing, crying, terror, etc).  She asked us if he had ever had these at first we said no, but then we realized that is what was causing him to collapse and look really funny when he laughed.
   We scheduled the MSLT test (Multiple Sleep Latency Test or Nap test: a sequence of 5 naps every 2 hours) and returned to the clinic 2 weeks later.  We had to do a sleep test to make sure that he was actually sleeping the night before..

We were able to sleep till 8 and then they unhooked him.  He got dressed, then ate breakfast, and it was time to get hooked back up and ready for the 1st nap.   We brought a car full of entertainment and snacks to get through what we thought was going to be a long day.   We didn't need much though, the day went by nice and smooth and very fast.  Van fell asleep each nap very fast and went into REM sleep on average within 3 min.  We were able to head home after 4 tests, because they had all the results they needed.  The next few days were the longest days ever....the stress of not knowing for sure was really hard.  We got the phone call from the Dr. and sure enough she told us that he had Narcolepsy with Cataplexy.

We have started some treatments for Narcolepsy and we are hoping to control it and have as normal of a life as possible.  

We are hoping to reach people or parents of children who are experiencing the same thing and be able to compare treatments to see if there is something more we can do.  Also to make people more aware that Narcolepsy is a very real possibility from the H1N1 vaccine.  

Remember I am just a Mom not a Dr. so definitions are to my understanding and spelling could be off a little.  I am not here to say you should or should not get the H1N1 vaccine,  just to make you aware of a possible side effect.