Discussions By Condition: I cannot get a diagnosis.

Possible link between Pandermrix and childhood Narcolepsy

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: caz4965
  • August 25, 2010
  • 07:57 PM

I have just back from seeing a consultant in Oxford where I was told that she is convinced that my 5 year old son has narcolepsy. I have trying to get a diagnosis for the last 7 months and this is what they keep coming back too. When I got home I looked on Wikipedia and found an article released yesterday stating that both the Swedish and Finnish health authorities were looking into a possible link between the swine flu jab Panermrix and childhood narcolepsy as 15 cases have been reported within 1-2 months of having the vaccine.

I found this very worrying as my son had this injection on the 21st Jan this year and then became ill with excessive sleepiness as the start 2 weeks later and the doctors are now convinced it is narcolepsy. there is no history of this in either mine or my husbands family and before this my son was a normal healthy child.

Has anyone else noticed anything different with their children after having this jab???:(

Where do I go from here??:confused:

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12 Replies:

  • 5-10% of those who have chronic fatigue syndrome (CFIDS) put the blame down to vaccinations with them often getting sick within days of the vaccination. Many doctors dont realise that even young children can get this illness (ive heard of 3 yr olds getting it) but this illness is the most common cause of long term illness causing school absenteeism in children. Your son only has that symptom???? If he has many others happening eg weakness, bowel issues etc he may of gotten CFS/CFIDS from it. (be aware that this illness can be slow onset, so more symptoms may come in after a time) Also be aware that a new virus has been discovered in humans (a mouse retrovirus.. XMRV and MLVs) and is affecting up to 7% of the population (but is being found in more than 86% of those with CFS). No one knows as yet how its being transmitted or what this virus can do (other then finding it in a lot more in agressive prostate cancer and in CFS. This virus in mice causes leukemia). No one knows how it has gone from mice to humans, it could be being passed on throu vaccinations!!! and right now Americas blood banks are contaminated by it, the government is trying to make sure there isnt a public panic over it.. hence you may not have heard about all this yet. They are rushing to produce a public testing method. This may sound all crazy, but the National Institute of Health and the FDA have done their own tests which have backed up the original tests done in other labs. http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf (thou source PNAS, is one of the top medical journals in the world). This vertification study only just come out this week. best luck. I hope he's just got some kind of short term issue from vaccination. It may be a good idea to get your son tested for the mouse viruses... as soon as the tests become public available which i hope will happen soon (im awaiting to be tested, my specialist thinks i have this issue). for more on CFS check out http://www.cdc.gov/cfs/general/index.htmlMore on the virus http://www.cdc.gov/xmrv/index.html
    taniaaust1 2267 Replies
    • August 26, 2010
    • 01:49 AM
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  • Hi,My son's symptoms are extreme sleepiness where he says he is sleepy then goes off to sleep no matter where he is or what he is doing, he has put 6kg of weight on in 6 months his facial muscles have dropped which leaves him with his mouth hanging open and tongue hanging out all the time, he falls over and loses muscle control when he laughs, he is unable to walk distances due to lack of energy, if he has a long day or an exciting day it then takes him 2-3 days to get over it, his temperament has changed from a pleasant well balanced little boy to an aggressive and temperamental child, his movements are very jerky with his legs sometimes giving way on him.The Specialist said that she is convinced this is narcolepsy as all the symptoms fit?? He had none of these symptoms before having the swine flu jab in Jan and all this has come about since Feb. Before then he was a normal healthy little boy, to me it seems too much of a coincidence to ignore.
    caz4965 5 Replies
    • August 26, 2010
    • 09:00 AM
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  • 5-10% of those who have chronic fatigue syndrome (CFIDS) put the blame down to vaccinations with them often getting sick within days of the vaccination. Many doctors dont realise that even young children can get this illness (ive heard of 3 yr olds getting it) but this illness is the most common cause of long term illness causing school absenteeism in children. Your son only has that symptom???? If he has many others happening eg weakness, bowel issues etc he may of gotten CFS/CFIDS from it. (be aware that this illness can be slow onset, so more symptoms may come in after a time) Also be aware that a new virus has been discovered in humans (a mouse retrovirus.. XMRV and MLVs) and is affecting up to 7% of the population (but is being found in more than 86% of those with CFS). No one knows as yet how its being transmitted or what this virus can do (other then finding it in a lot more in agressive prostate cancer and in CFS. This virus in mice causes leukemia). No one knows how it has gone from mice to humans, it could be being passed on throu vaccinations!!! and right now Americas blood banks are contaminated by it, the government is trying to make sure there isnt a public panic over it.. hence you may not have heard about all this yet. They are rushing to produce a public testing method. This may sound all crazy, but the National Institute of Health and the FDA have done their own tests which have backed up the original tests done in other labs. http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf (thou source PNAS, is one of the top medical journals in the world). This vertification study only just come out this week. best luck. I hope he's just got some kind of short term issue from vaccination. It may be a good idea to get your son tested for the mouse viruses... as soon as the tests become public available which i hope will happen soon (im awaiting to be tested, my specialist thinks i have this issue). for more on CFS check out http://www.cdc.gov/cfs/general/index.htmlMore on the virus http://www.cdc.gov/xmrv/index.html Hi, I am not saying the possible link for no reason. My son had the Pandemrix flu jab in Jan and in mid feb started showing all of the following symptoms, before hand he had been a very healthy little boy with only the occasional cold, to me it is a huge coincidence that these symptoms started after the jab and the consultants are now saying they are sure it is narcolepsy. There is also no family history of it.His symptons are: Excessive sleepiness, falling asleep during the day even at school, weight gain, muscle weakness where his legs buckle when walking and his arms sometimes buckle, muscles have dropped in his face resulting in him walking around all the time with his mouth open and tongue hanging out which also has affected his speech, falling over if laughing and unable to support his head when laughing, temperament has changed from being a happy well balance child to an angry and aggressive one who is very temperamental, wakes at least twice every night, scared to be on his own to the extent that he does not like going to the bathroom alone, if he has a exciting or long day it then takes up to 3 days to recover from it.Like I said he had none of these symptoms before, they have all come about since mid Feb.Believe me I do not want it to be narcolepsy but according to the above symptoms they all fit.:(
    caz4965 5 Replies
    • August 26, 2010
    • 11:16 PM
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  • if he has a exciting or long day it then takes up to 3 days to recover from it. .:( I just checked in the narcolepsy stuff at wiki and saw that that too fits your sons symptoms. That part i quoted above thou.. is that a normal thing for narcolepsy?? As that is exactly what happens in chronic fatigue syndrome. In CFS one gets post exertional symptoms and that is the one thing which really helps define it from other illnesses. I think you should chat to some on a narcolespy forum and find out if post exertional exhaustion for days after things can be in narcolepsy too he is unable to walk distances due to lack of energy That too.. im not sure is a narcolespy symptom?? (i think you should go to chat to others with narcolespy and find out).. but is quite normal in CFS. (CFS patients can fall asleep at odd moments just from the sheer exhaustion and tiredness they feel and also have muscle weakness and so many other issues). (it is possible he may have narcolespy and CFS). If it is CFS and not narcolespy (by the looks of it, either could of been triggered by the vaccination).. you may find he gets worst if given the central nervous system stimulation drugs for narcolespy IF he does in fact have CFS... as with CFS if one stimulates it.. one does tend to do them more... but that then that can go onto leading to quite severe consequences from doing the extra activity (eg even worst weakness etc .. and this can cause a permanent condition worsening in CFS). please make sure you go and chat to others with narcolespy and make sure that FULLY fits his case. (if it appears he may have CFS on top.. take extra care when trialing meds). best luck
    taniaaust1 2267 Replies
    • August 27, 2010
    • 01:01 PM
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    taniaaust1 2267 Replies
    • August 27, 2010
    • 01:10 PM
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  • I tried doing some research on the Glaxo Cline investigations and I find the lack of info. on the net suspicious.The company has definately being looking into this link but the lack of published results (unless the investigations are still on going) seems to indicate that they do not want the public to find out what the have discovered.
    chrismia 159 Replies
    • August 27, 2010
    • 02:09 PM
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  • I tried doing some research on the Glaxo Cline investigations and I find the lack of info. on the net suspicious.The company has definately being looking into this link but the lack of published results (unless the investigations are still on going) seems to indicate that they do not want the public to find out what the have discovered. most big companies like this one, settle out of court if it may be proven they were to blame. Out of settlements involve the ones involved not being able to talk about it. The public doesnt find out about so much which goes on. The Swedish Medical Products Agency (MPA) and The Finnish National Institute for Health and Welfare (THL) have received in summer 2010 reports from Swedish and Finnish health care professionals regarding narcolepsy as suspected adverse drug reaction following Pandemrix flu vaccination. The reports concern children aged 12–16 years where symptoms compatible with narcolepsy, diagnosed after thorough medical investigation, have occurred one to two months after vaccination. Consumer reports describing similar symptoms have also been received. Both organizations have, in consultation with external experts, began to assess the possible relationship between the vaccination and the reported reactions. MPA and THL have been in contact with other EU member states to get information if there are any reports in other countries.Currently, THL is recommending that further Pandemrix vaccinations are discontinued pending further investigation into 15 cases of recently vaccinated children developing narcolepsy in late 2009 and early 2010. Most recently, THL raised the figure to 17, while the expected average occurrence would be six cases annually. In Sweden, MPA has discovered 12 confirmed and another 12 suspected cases. Additionally, MPA says it is aware of individual case reports from France, Norway and Germany. Caz.. i think you should email the swedish medical products agency and the finnish NIH and welfare doing the investigation into all this.. and tell them of your case!!!!
    taniaaust1 2267 Replies
    • August 27, 2010
    • 02:32 PM
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  • http://www.lakemedelsverket.se/Alla-nyheter/NYHETER-2010/Aktuell-information-om-utredningen-av-fall-av-narkolepsi-efter-vaccination-med-Pandemrix/Aktuell information om utredningen av fall av narkolepsi efter vaccination med Pandemrixden 26 augusti 2010Läkemedelsverket har hittills fått in 12 rapporterade fall om narkolepsi från sjukvården där samband med vaccination med Pandemrix misstänks. Utöver fall från Sverige och Finland finns enstaka rapporter från Frankrike, Norge och Tyskland. En utredning av fallen pågår, men i nuläget kan ett orsakssamband med vaccinationen inte fastställas. Läkemedelsverket har tidigare informerat om rapporter om narkolepsi där samband med vaccination med Pandemrix misstänkts. Totalt finns 12 fall av narkolepsi inrapporterade till Läkemedelsverket från sjukvården i Sverige samt 12 konsumentrapporter som beskriver snarlika symtom, men där ytterligare utredning krävs. Läkemedelsverket har kontaktat övriga läkemedelsmyndigheter i EU med en förfrågan om liknande biverkningar finns rapporterade i respektive land. Hittills har Läkemedelsverket fått svar från 18 länder. Utöver fall från Sverige och Finland finns enstaka rapporter från Frankrike, Norge och Tyskland. En utredning pågår. Flera faktorer är viktiga att överväga för att man skall kunna göra en bedömning om det föreligger ett samband med vaccinationen. Det är till exempel känt att infektionssjukdomar kan leda till neurologiska följdverkningar. Fallen måste utvärderas noga och diagnosen fastställas och antalet fall sättas i relation till antalet insjuknande i narkolepsi under tidigare år, det vill säga det antal fall som normalt förväntas inträffa i befolkningen.En löpande dialog pågår mellan de svenska myndigheterna, Läkemedelsverket, Smittskyddsinstitutet och Socialstyrelsen. Inom kort kommer ett möte att hållas med nationella kliniska experter och experter på sjukdomars förekomst i befolkningen. Mötet skall belysa de frågor som uppkommit liksom planera för uppföljningsstudier som kan krävas för att belysa ett eventuellt samband mellan vaccinering och narkolepsi. Dessutom planeras insamling av uppgifter från sjukvården för att fånga upp eventuella ytterligare fall.Utredningen är prioriterad i Sverige, såväl som i EU. Läkemedelsverket kommer att återkomma med information allt eftersom kunskapsläget förändras. translated to Current information about the investigation of cases of narcolepsy after vaccination with PandemrixAugust 26, 2010MPA has so far received 12 reported cases of narcolepsy from medical treatment in the context of vaccination with Pandemrix suspected . In addition to cases from Sweden and Finland there are isolated reports from France , Norway and Germany . An investigation of cases in progress , but at present , a causal relationship to vaccination was found. MPA has been previously informed of reports of narcolepsy , where the vaccination with Pandemrix suspected . In total there are 12 cases of narcolepsy reported to the MPA from health care in Sweden and 12 consumer reports describe similar symptoms , but further investigation is required . MPA has contacted other medicines authorities in Europe with a request for similar side effects are reported in each country . To date, the MPA received responses from 18 countries . In addition to cases from Sweden and Finland there are isolated reports from France , Norway and Germany . An investigation is ongoing . Several factors are important to consider in order to assess whether there is a link with vaccination. For example it is known that infectious diseases can lead to neurological effects . The cases must be carefully evaluated and diagnosed and fixed the number of cases seen in relation to the number of onset of narcolepsy in previous years , namely the number of cases normally expected to occur in the population .A constant dialogue going on between the Swedish authorities , the MPA , the Infectious Diseases Institute and the National Board . In the near future a meeting be held with national experts and clinical experts on the disease prevalence in the population . The meeting will highlight the issues raised and to plan for follow-up studies required to elucidate a possible link between vaccination and narcolepsy . In addition, the planned data collection from health care to catch any further cases .The investigation is a priority in Sweden , as well as in Europe . MPA will come back with information as the state of knowledge is changing .
    taniaaust1 2267 Replies
    • August 27, 2010
    • 02:49 PM
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  • i contacted the swedish Medical Products Advisory Agency last night about your son and this thread.. Today the news on this vaccine causing narcolepsy is breaking news.. just been published today in the Sth Australian news from london correspondances, i guess other countries will follow with similar stories http://www.adelaidenow.com.au/news/breaking-news/europe-probes-swine-flu-jab-sleep-disorder-link/story-e6frea73-1225911210998
    taniaaust1 2267 Replies
    • August 28, 2010
    • 06:13 AM
    • 0
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  • i contacted the swedish Medical Products Advisory Agency last night about your son and this thread.. Today the news on this vaccine causing narcolepsy is breaking news.. just been published today in the Sth Australian news from london correspondances, i guess other countries will follow with similar stories http://www.adelaidenow.com.au/news/breaking-news/europe-probes-swine-flu-jab-sleep-disorder-link/story-e6frea73-1225911210998Thank you. I have contacted the British medical authority today by emailing using the yellow card reporting system so hopefully I will hear something back from them.
    caz4965 5 Replies
    • August 28, 2010
    • 10:10 PM
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  • Hello there, here's a quick update from Finland. According to the latest info we have 56 reported cases of narcolepsy following a Pandermrix shot (outbreak 1-2 months after inoculation). Age of those affected range from 4 to 19. Just for those who are not familiar with the Finnish system, I'd like to point out that THL was in the forefront for recommending the vaccine and has only recently (and very reluctantly) started to admit that there MIGHT be a connection between Pandermrix and narcolepsy (even though normally we have just 2-4 cases a year). So they might not be the best source of information.. Good luck and strength to all of you struggling with this nightmarish situation!!
    Anonymous 42789 Replies
    • January 31, 2011
    • 07:46 AM
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  • Hi, I am not saying the possible link for no reason. My son had the Pandemrix flu jab in Jan and in mid feb started showing all of the following symptoms, before hand he had been a very healthy little boy with only the occasional cold, to me it is a huge coincidence that these symptoms started after the jab and the consultants are now saying they are sure it is narcolepsy. Believe me I do not want it to be narcolepsy but according to the above symptoms they all fit.:(Hi CazFrom what you're describing it does sound like Narcolepsy and I would probably go with what the consultants are saying - provisionally - ask them if Chronic Fatigue Syndrome has been considered (out of respect for what the previous poster has correctly said) and "could you consider it now please?" if it hasn't been considered yet. If it has, but then been discounted, then "on what basis?" Then you also NEED to ask for your son to have a PSG Study and MSLT the following day done. This is a definitive way to diagnose Narcolepsy and your son is not too old or too young to have this test. Make sure it is a Children's Sleep Lab that does the test (I work in one in my country) as there are significant differences between a Children's Study and an Adults Study. If it wasn't then there would be more clinics offering Children's PSG's but we see Sleep "Labs" offering adult studies everywhere (usually associated with Dental Surgeries) but Children's Labs are far fewer. Expect to have to travel to get to one. This will help the consultants and also provide a degree of certainty for you in this diagnosis.The cause? It may well be that the vaccine is a possible/probable cause. My daughter had progressively worsening reactions to vaccines and it took a serious reaction with hospitalisation at 5 years of age for me to connect the dots and stop all further shots. Now we have a disabled, will-always-need-care young adult. My next two children have had no shots at all and are doing just fine. I think the list of chemicals and ingredients in vaccines present far too many variables and potential toxins for us to truthfully be able to do more than 'connect the dots' on results, even without truly understanding the mechanism of damage.I wish you all the best with your son. It's a hard road when illness overtakes you like it has, but it's not without it's joys and treasures either. Seek those and learn to become your son's advocate. What people think of you doesn't matter when you're defending your child in the medical community.From one mum to another - remember to keep thanking God for your journey, even if the road travelled isn't the one on your original ticket. It's what keeps you from falling apart and grows you the "mostest and bestest". :)
    Anonymous 42789 Replies
    • February 26, 2011
    • 09:54 AM
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