Vand'n's Narcoleptic Life

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.