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.
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