SOAP BOX RACE

Come out and join us for Cedar City's Soap Box Race.  

May 10th @ 4.  

We built a SPECIAL CAR for Narcolepsy Awareness.  

We can't wait :) 

Wear your shirts and come support Vand'n!!!!

KNOW BEFORE YOU GO! H1N1/Flu Vaccine can trigger narcolepsy.

EVERYONE SHOULD KNOW BEFORE THEY GO!

Lately everywhere  I go I see these signs!  I use to just walk on by without much thought, now I cringe and get sick to my stomach.  Just a few days over a year ago I ushered my 3 older children in to get their flu vaccines trying to protect their new baby sister from any avoidable sickness, not knowing this would be a life changing moment and have devastating consequences to my 5 year old son and our family.  Van was diagnosed with narcolepsy with cataplexy triggered by the H1N1/FluMist vaccine in April 2013.  The H1N1 vaccine is combined with the flushot and has been since the false panic from a few years ago.  It is not advertised, but it is usually mixed in there without you knowing.  We didn't know, and it might not have made a difference if we did.  But we know now, and want to make sure you know.

That day Vand'n opted for the FluMist (like most kids he hates shots and needles) his little brother Krosby joined him and big sister Denim went for the jab instead.   Everyone was content and we went for ice cream.  Within weeks van was sleeping a lot. He would fall asleep anytime and anywhere.  He was tired all the time.  He started sleep walking, having night terrors, sleep paralysis, and acting out his dreams. He had a hard time staying asleep throughout the night.  The sparkle that was once in his eyes was gone, and he could barely get his eyes to open half way.  After a few months Van started to look really silly when he laughed and eventually started collapsing when he would laugh even just think of something funny or if he got upset or angry (we now know this as cataplexy).  He was no longer happy and mellow he was very tired and agitated.  The slightest thing would make him shut down completely and things only got worse when we started medicine to treat the narcolepsy.  He turned violent, angry and hateful.  Everyone walked around on eggshells so we didn't have a full out war in our home.  

Things have gotten better and we are learning to live with narcolepsy.  We have changed around some meds and are trying to find a balance.  Van looks normal especially to those who aren't with him a whole ton.  That is probably one of the harder things.  People see him and think he looks fine but Van goes through a lot just to be able to function throughout the day including a schedule, naps, limiting activities, and meds to help with his cataplexy and mood.  Night time is crazy with 3 doses of medicine that he has to have throughout the night we all feel a little sleep deprived sometimes.  

Narcolepsy is real.  Narcolepsy is life altering.  Narcolepsy is much more than just being tired. Narcolepsy has changed our lives and if we can help save one other person from getting narcolepsy or help someone who has these symptoms get diagnosed, then we will have helped make someone's life a little easier.  Everyone deserves to know it is a possible side effect from the H1N1/Seasonal Flu Vaccine. It maybe only be a possible side effect but what percentage is worth risking?   And think... Van had that same percentage chance as everyone else.  We never thought that Vand'n would be at risk for narcolepsy or that it even had a connection. 

As long as you know before you go, you can make an informed decision.  

There aren't studies out yet in the US and it is important to know that the other countries that have had a huge increase in narcolepsy numbers from the H1N1 vaccine used a different vaccine, one that had a adjuvent (booster) in it to make the drug more effective.  The US has NOT used that same vaccine here.  The US vaccine still has had many narcolepsy cases linked to it throughout the country and here in Utah. Van's Sleep Specialist, Dr. Pfeffer has several patients (many young children) that have developed narcolepsy triggered by the vaccine these past few years.   We also discussed this with Dr. Mignot (World Renowed Narcolepsy Reaserch Dr. who has led many studies in narcolepsy and the H1N1 flu) and he agrees that Narcolepsy is a potential side effect of the H1N1 vaccine and especially the FluMist (because it actually has a live virus) .

It is important to know to that if you were to get the H1N1 flu you could have a chance of getting narcolepsy.  There are other influenza A stemmed flu's that have been known to trigger narcolepsy as well.

The CDC has nothing about narcolepsy being a side effect and it could be years before they have a study that links them well enough for them to confirm it.  They completely deny that it is happening or even possible each time that Dr. Pfeffer reports another case to them.

I would love to try and answer questions for those who want more information.  Remember I am not a Dr.  just a mom who has been able to learn from great Dr's and other parents who's children have been effected.  I would be more than happy to answer any questions I can for those wanting more information.  

Trip to Stanford

    Well, the time to go to Stanford and see world renowned narcolepsy expert, Dr. Minot finally came last week.  Vand'n was so excited he couldn't sleep the night before (crazy I know, but it's true).  He had his travel bag packed on Saturday for our flight leaving Tuesday morning.  There were some tough decisions made about what toys and books to leave behind, but he powered through and had it finalized on Saturday, except for his treats which he picked out Sunday night - again, for our Tuesday flight.
    One thing Deidre had told him not to pack was his Ben 10 shirt (which he seriously wears 5 nights a week).  This is only relevant, because as we were going through security and he realized that they were going to X-ray his bag, he grabbed Dee and told her in a very serious, and scared voice that he had snuck the shirt into his bag.  I don't know if he thought they would get mad because it has super powers or what, but it made for a good laugh.

    Once we were on the plane, and buckled in, we had to wait on the runway for about 20 minutes, and that was it for him. He was asleep within 10 minutes, so he missed his first takeoff.  When he woke up, he was very excited to be in the air and see the clouds out his window.  He didn't stop asking "Mom, what's that?" for the rest of the flight, while blocking the window with his head so she couldn't see past it.  This is when he busted out his first Fruit-by-the-Foot and informed us that he had four of them (one for each plane of the trip.  Remember this because it comes up later).
    We landed in SLC and had to quickly switch planes.  Thank you to Dee's sister Mandi for letting us borrow the jogging stroller or Mr. Slow walker would have made us miss the flight.  He was able to stay awake until take off and he played it cool by acting like he had done it before.  The flight was a little longer, and he did get a little agitated that it was taking so long, even though he slept for an hour of it. Mom also managed to dump her entire drink on the aisle during this flight.  So fun!
    We landed and got our luggage, which Van insisted on dragging around.  As we were walking past all the rental cars he started begging for either the Camaro, or a van.  We found our car and the fun began, because that fancy jogging stroller wouldn't fit in our fancy Hyundai Accent.  After I dismantled the whole thing and got it to fit, we went to get pizza.  Vand'n had two huge slices and we went to the hotel. He fell asleep between the pizza place and the hotel, so he was very suprised that he magically woke up in a hotel bed.  We were just glad he didn't panic because he didn't know where he was.

   About two weeks before we went, I asked Vand'n if he wanted to go to a big league game and he wasn't too interested, so I moved on and tried to find other stuff to do.  Wel, as soon as we landed, guess what he asks?  "When is the game Dad?"  Well, I pulled my best audible and found tickets online, and we went to the game tuesaday night.  I wasn't paying much attention to anything, other than just find some tickets and we will go.  So we get to the game at Oakland Colosseum between the A's and Angels.  We find our section right on the first base line, and start going down.  We were on row 9.  It's not til we get down there that we realize we are behind the dugout and row 9 is really only four rows back from the Angels.  We are twenty feet from Hamilton as he throws his gum wrapper at Trout during the national anthem.  The game was good and Vand'n was enjoying himself until he got tired in the fifth. So Dad held him for a nice little 45 min nap while Mom and Dad got to pretend they were on a date!  A's won on a walk off single.
   We may have got temporarily misplaced (read: LOST) on our way home since both phones died and we forgot the car charger didn't work.  So as we meandered our way through Mountain View passing google security trucks, Vand'n would panic a little when we would say, "I think it's that way" or "Are you sure?"  Poor guy pays too much attention.  We got lost in northern Mexico (southern cal) with denim when we went to Disneyland when she was about 4, and she didn't bat an eye.
    We finally wandered back to the hotel about 1, and went to bed.  We woke up, got ready, and went to breakfast at our new favorite fast food joint- Jack in the Box- on our way to the Dr.  We found the building and went inside.  This was fire drill day and the receptionist told us to just stay put, but a scary lady came yelling at everyone that they had to go.  So while we were in the parking lot, Mali (Dr. Minot's assistant) called and told us to get back in there.  So fun!
    Once we finally got to the room, and met Mali, something just felt right.  Everything slowed down, and we knew we were exactly where we needed to be.  We first met with a Dr. who is doing some training under Dr. Minot.  He asked us a bunch of questions, and got all of the history.  He really took his time, to fully understand and make sure he had everything straight in his notes.  Dr. Minot came in after about 30 minutes with the first Dr. and brought in 3 of his research team.  So we then spent about an hour talking its him about the medication Van is on, and why.  He then changed one of the medicines and explained exactly why, right down to the cell reaction that will help with his cataplexy.

    We told him about Dr Pfeffer in SLC who diagnosed him and believed that it was from the H1N1, and that she had 3 other children just like Vand'n.  When we told him that she was told by the CDC that it was impossible that it was triggered by the mist vaccine, he looked dumbfounded.  He told us that his thoughts are that there is a third group of cells that are being affected by the H1N1 and those cells are then the ones killing the neurons that keep us sleeping normally.
    Mali then came in and as we were talking she pointed out that she only has 4 doctors in the country she trusts when they send referrals, and Dr. Pfeffer is one of them, so we were blessed to end up there for the sleep tests.  We learned so much in our two hours there.  We learned that only 25% of the population even has the HLA gene that is tied to narcolepsy (without it, it is close to impossible o have narcolepsy).  We learned that they spend a lot of time correcting misdiagnosis of narcolepsy.  Mali said that most families of, or people with narcolepsy usually know more about the disease than most sleep Doctors.  I think they learned from us also.  When Vand'n was having a cataplexy attack from watching ice age, the students were watching him very closely almost as though they hadn't seen many in person.
    After the appointment, Mali took us to see Dr. Minot's dog, who has narcolepsy with cataplexy.  Vand'n was pretty well shut down and tired by this point, so he wasn't too animated, but I think he appreciated knowing he isn't alone in the things he is experiencing.  Mail gave us some Wake Up Narcolepsy SWAG and we said good bye, and saw the worlds biggest toilet on our way out.

    We walked out of there on cloud 9.  We had answers to questions.  New direction with medications that had never even been mentioned to us before, and hope and excitement for the research being conducted there.  Anyone with Narcolepsy that has the opportunity to go there should take it.  

     This is when we decided to hit up Fisherman's Wharf and see what was going on.  Van was out as soon as we hit the highway to San Francisco.  I was amazed by how the houses are just stacked on top of each other on hillsides that are too steep to even sled down in my opinion.  We started out by going to lunch at a place with an arcade.  After he won his tickets, he had the hardest choice of his life: spider ring or 1 tootsie roll and a sweetart?  Of course, the candy won, and the $10 treat was gone by the time we hit the door.

It's tough being a kid with all these choices.

  We walked out of the restaurant straight into a magic show.  Vand'n laughed at some of his jokes, and the Cataplexy almost made him fall over, but he caught himself.  We went to check out the Sea Lions and look at some island called Alcatraz through the binoculars next.

   At this point, his hunger got the best of him and he asked for some mini-donuts from a place we had passed earlier.  So we went and bought a bucket of mini doughnuts, which they bathed in cinnamon-sugar (aka Vand'n's Catnip).  I was able to sneak 3 of them out of the bucket and Dee got her hands on 3 of her own.  Within about 15 minutes of walking around, Vand'n had eaten the other 15 or so doughnuts.
     After the doughnut massacre, he fell asleep in the stroller, so Dee and I went on a date down the boardwalk.  First we watched a wedding (Elvis performed the ceremony and sang the first song while they danced).  We wandered down to an old battleship and submarine, and found an arcade where all the machines were pre-1940 and all worked.  Then just as we were walking past the "Ripley's Believe it or not" museum he woke up to see a huge Optimus Prime made from car parts in Thailand.

After we packed up, we went to Chinatown to just drive through and see what it was all about.  Well, all I can say is that driving in San Francisco is a real great experience if you want to shave a few years off your life.  Its was insane how tight the roads were, and people don't even bother stopping to look most of the time.  My biggest scare was turning up a road just to discover that I was on a track.  I was sure I had messed up until I figured out that the cable cars drive on the same roads as the cars do (they should really cover this stuff when you rent a car there).  We started heading back to the hotel about 7 and had dinner. We were all beat so we called it a day.

    On the day we went home, it was a pretty standard trip home.  Here are some highlights:

         Vand'n fell asleep on the flight between San Jose and Salt Lake, and woke up as we were descending. When Dee told him we were about to land, he sat straight up, grabbed his Fruit-by-the-Foot(remember that he packed 4, one for each flight?) and gobbled it down in 20 seconds flat.  Maybe he has a little OCD???

        When we landed in Cedar, the whole family was there to greet us in their Narcoleptic Boy shirts.  Thank you to Sherry and Tammy and Mandi for watching the kids.  Thank you to Aunt Jennifer for trying to send him some gifts while he was at the Dr (too bad amazon couldn't get it together).  Thank you to everyone who chipped in to help us get there.  Thank you to the Standford Sleep Dr's, especially Mali for all the help she has given us over the last 6 months.  Thank you to everyone who has prayed for us, or shared our blog or liked our facebook group, or even just read any of this.  We love and appreciate all of you, and even though we can't personally thank each of you individually, know that you are all appreciated.

 

Prayers!!!

We have defiantly been kneeling a lot more around here and we know others have been kneeling for us. Thank you all for thinking of us we are so grateful for this great community and all the support you give. Right now we are preparing to go see Dr Mignot (He is the World's Leading Narcolepsy Dr) and I know that the Lord has had a huge role in helping us find great Dr's and a quick diagnosis. Please continue to pray for us and others in the narcolepsy community and all others who are going through life trials.

1st Week of school!!!

Vand'n was so ready for school to start.  I wish I could say the same for ME.  I had (and still have) very mixed emotions about it all.  As many other mom's of new kindergartners do.  We made it through the first week of school and although it is only 3 hours long he did pretty good getting used to his new routine.  He was exhausted by the time he got home just before noon and it was all he could do to stay awake while I made lunch so he could eat and have a rest.  I learned after the 2nd day that I needed to have lunch started or done before I walked over to get him.  Then it was NAP TIME!  You would think that since he is so tired he would be excited to take a Nap but not the case "NAPS are for babies" that is what I am told.  So we now have QUIET TIME!!! He goes into his been and reads books.  He also informs me everyday "I am not going to sleep I am just going to read".  He is out in under 3 min every time and he sleeps for 2-3 1/2 hours.  The first day to school he told me he didn't get tired at all "I didn't let that narcolepsy get me, I just  punched it right in the face". 

   As I think back to last year at this time... I had a few of the same emotions as I have now they are just stemming from the narcolepsy.  I worried about him being so much taller than the other kids and getting made fun of (more as he gets older), now I worry that he will be made fun of for sleeping or looking silly and/or collapsing when he laughs.  I worried about him being bored and loosing interest, now I worry about him getting bored and falling asleep.  I worried about him not eating school lunch, now I still worry about him no eating but honestly I am so grateful he doesn't like food because many children/people with narcolepsy are very overweight.

I NEVER imagined that he would develop narcolepsy.   

I NEVER worried that the flu shot/H1N1 would trigger narcolepsy.

I NEVER thought that we would have to meet with his teacher and the special education department discussing a 504 or an IEP for  his schooling and his well-being.  

I NEVER knew anyone who had narcolepsy (that I was aware of).

I NEVER knew we would be PUSHING FOR & HELPING SPREAD NARCOLEPSY AWARENESS.

I NEVER dreamed that we would meet so many or even that there were other families dealing with narcolepsy in their young children.

   I have visited with so many mom's about their children's schooling and quite honestly have been sickened by their stories of how their children are treated by students and teachers.  How horribly mistaken they are for saying there was nothing wrong with these kids and that they were just lazy, unmotivated, and needed to get more sleep at night.  A few parents even told me that their child's school refused to let them have a scheduled nap (even after having a Dr's. note) because there was simply just not enough time.  Some that were allowed naps had to do so at the back of the class with no pillow or blanket and at the display of the class.  One story saddened me to no end...this boy was not allowed to have a nap and when he got tired the teacher would make him stand and walk (which is probably OK to do before they get tired) when he did fall asleep sitting at his desk he would awake with marks of pen and marker all over him.  

   We have been so very fortunate so far with school.  We set up an appointment with the Special Ed Department and his teacher.  We presented them with brochures and information sheets and we even showed them a few of Vand'n's cataplexy videos so that they could see what it looked like and to make sure they knew that he would be OK and that he wasn't having a seizure.  Also to make sure that someone would be in charge of making sure that Van wasn't left sleeping somewhere if there was a fire or other emergency. Everyone has been very curious and eager to learn and help him.  He has a great teacher and an aid in his class.  We will meet again in a month or 2 to put together a more formal plan when he see how his going to do.  

WE PRAY FOR HELP IN SPREADING AWARENESS OF NARCOLEPSY AND FOR THE FAMILIES AFFECTED BY IT.  ALSO FOR STRENGTH FOR THOSE WHO ARE SUFFERING BECAUSE OF THE LACK AWARENESS IN THEIR COMMUNITY AND OTHERS THEY ARE IN CONTACT WITH.

WE WILL CONTINUE TO PRAY FOR A CURE FOR NARCOLEPSY AND SO MANY OTHER DISORDERS AND ILLNESSES.  

HELP OUR NARCOLEPSY COMMUNITY!!!

FDA’s Narcolepsy Patient Focused Meeting on September 24, 2013 is quickly approaching. This ground-breaking opportunity puts narcolepsy advocates in the spotlight – educating decision makers and helping to shape the future of narcolepsy treatments.
YOU CAN HELP BY...
     TAKING THE SURVEY:  People with narcolepsy AND loved ones are invited to take this anonymous confidential survey, based on the FDA’s questions to capture the variations in patients’ experiences (about 15-20 mins to complete).
Take survey here!

YOUR CAN GET INFORMED BY....
    JOINING THE WEBINARS:  Check in with Julie here. She will have the link and updated information on her page as it becomes available.  The webinars are offered on each Thursday leading up to the FDA's meeting.

YOU CAN ATTEND THE FDA's MEETING...live or by webcast Register Here

T-Shirts!!!

We have been working on some shirts for a while, and they are now finalized and being printed (they will be ready on the 12th of Sept).  We took a while to get them right because the characters are the basis for a children's book that Vand'n wants to write.  Before you ask, it will be Super Hero themed since Van's whole life revolves around anything with super powers. 

Narcolepsy is our New Normal, and he has embraced it as his super power.  We know it will make him stronger and work harder to get him where he is going in life.  

We choose to empower him to not be afraid or to let Narcolepsy have any hold on him.   We realize that he will end up being "The kid with Narcolepsy" because of all of this, but we feel strongly that is going to be the case even if we try to hide it and push it under the rug, so we have decided to help him along by not backing down, and not hiding, and letting him go out and boldly face the world.  

The shirts will be available for purchase if you are interested.  We can ship or arrange pickup if you would like.  We are asking for $15 donation to help with medication/doctors visits and to help get him to Stanford and possibly the Narcolepsy Conference in the next few years.  Please contact Deidre at (four three five)-463.2001  if you are interested.   

The boy and girl are available in youth sizes XS, S, M, L  and adult sizes S - 3XL in the colors shown below.