Tuesday, October 22, 2013

Should the children of PWN be given the influenza vaccination?

The association between Pandemrx / influenza and narcolepsy has never been so relevant to me until today. My 12 year old was due to have the new flu inoculation at school and as a PWN it raised an interesting question...are there any risks involved in having my children vaccinated, given that they may have inherited the narcolepsy gene from me? At the moment, there is no official advice that is specific to PWN, so here are some facts for parents to take into consideration.


  • There IS a proven association between influenza (including the H1N1 variant) and narcolepsy being triggered amongst those with a predisposition to the narcolepsy.
  • This current flu immunisation programme within the UK has different active components and is delivered in a completely different way (nasal spray, rather than injection) to Pandemrx.
  • Research indicates that it was the adjuvants (the active ingredients to promote a faster immune response) within Pandemrx that triggered the autoimmune response leading to narcolepsy in children (possibly those with a precursor to the condition).
  • These adjuvants are NOT in the new flu nasal spray.
  • One of Professor Mignot's research projects found NO correlation between the H1N1 vaccination (I'm unsure of the trade name, but it didn't contain any adjuvants) and narcolepsy among the patients he studied in China. This adds further weight to the theory that it's not the vaccination that is concerning, but the influenza itself. Professor Mignot warns that The new finding of an association with infection, and not vaccination, is important as it suggests that limiting vaccination because of a fear of narcolepsy could actually increase overall risk.” 

The above would indicate that the new influenza vaccination programme within the UK doesn't pose any unnecessary risk to the children of PWN, but as a mother I can't help but worry and question. Given that every flu vaccination contains a mild strain of the virus that it intends to protect against, would people with narcolepsy be putting their children at risk by allowing them to have the vaccination? Or will children be at greater risk if they go unvaccinated? 

I'm a big believer in vaccination programmes, its one of science's greatest victories to protect and avoid illnesses that were once life-threatening. However, as a parent I have a responsibility to question to ensure that I make an informed decision that is appropriate for my children. Perhaps if more parents had questioned what they read some years ago, the whole measles, media saga (where thousands of parents refused to have their children vaccinated against measles, following incorrect newspaper reports that the inoculation carried a risk of causing autism) could have been avoided. Professor Mignot's warning is certainly valid. The fewer children inoculated, the overall greater risk of the virus spreading. But does this advice apply to PWN?

This is the first time I've encountered a vaccination that could possibly carry more risks beyond the norm and I've personally decided that I'd like more specialised advice before my daughter is inoculated. I plan on discussing the subject with my specialist when I see him in a few weeks time. Poor man, I'm going to be armed with a list at this rate!

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