Ack!! We need a Care section.

So, how worried should we be about swine flu and our boys? Especially those of us living near documented cases. I admit I haven't read a whole lot about it, so am not sure of how bad it can be.

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Does anyone know if there will be a swine flu vaccine coming out soon?
News reports are talking about the vaccine being available in mid-October. It's being tested in volunteers right now - at Cincinnati Children's Hospital, among other places...
OK - hate to open this can of worms again, but I've been researching the vaccine, and they're going to put an adjuvant in it called squalene that has never been through clinical trials in the US - not even phase I safety trials, and it has evidence of harm in animals.

So what do you guys think? I'm super nervous about using Aidan as some sort of FDA guinnea pig. (Don't even get me started on how they won't accept safety data on AVI's drug from the EU, but the EU's record of "safety" of squalene in old people in Europe is perfectly acceptable...)

Here's some info on it from a variety of sources: - take this one with a grain of salt because wikipedia is edited by members

Here's the WHO's take on it - notice the last paragraph - post-marketing follow-up?:

Here's the animal study:

Could really use some thoughts on this, as I'm really unsure. The studies they're doing right now only follow-up for several weeks - not long enough for an auto-immune condition to appear. Although since most of the boys are on steroids, would they be less at risk of an auto-immune reaction?
Mindy it is a tough decision to make with any vaccine as there are always risks.

Squalene has been used in vaccines since 1997 and 22,000,000 doses have been administered to date using it as a conjugated adjuvant. So whilst the current flu trials have been monitored for a couple of weeks/months, the effects of squalene have been assessed over 10 years across many applications.

Wiki is pretty accurate in what it is reporting, and whilst you are correct in the fact each stub is created by any Tom, Dick or Harry, globally the integrity of the information presented is monitored by personnel that work in the relevant fields who will ammend any misleading or incorrect information as it occurs (as shown in the discussion for every stub)

The risk of GBS is a direct result of the influenza virus - not the vaccine....therefore if (heaven forbid) any of our boys caught H1N1, the risk of them developing GBS is the same as the risk of them developing it from the vaccine.

Each strain of influenza has a different rate of incidence of GBS depending on the virus/host cell interaction. It appears the risk of GBS with this strain of H1N1 is as low as the "seasonal" strains, so the risk of GBS in this case SHOULD be as low as the risk from a standard flu shot (which we give our boys each year) however only time will be able to confirm or deny this assumption.

As with any decision involving the care of our boys, it is always (and should always) be about making decisions based on the benefits v's the risk. We have long debated the steroid issue, and know the side effects associated with both prednisolone and deflazacourt, however we do also know the benefits steroid use offers - hence their worldwide use for boys with DMD.

Vaccines sit in the same category. No-one can guarantee your child will not have an adverse reaction to the vaccine, however on the flip side, no doctor could guarantee you that your child would survive if they caught the current strain of H1N1.

Based on the current experiences of Australia, we have had fatalities associated with the H1N1 swine flu predominantly pregnant women and those in the at risk group, and they are occurring at a slightly higher rate than seasonal flu. However it has not been as virulent as first feared, and we certainly have not seen pandemics "sweeping" through neighbourhoods as predicted.

Now once again I am not saying any parent should (or shouldn't) vaccinate their child against the swine flu, but it is worth discussing the matter at length with either your pediatrician or primary health care provider to ensure that you are making the best decision based on the latest information for your area.

Hope that helps,

Hi Julie,
Thanks for the response. What do you think about the fact that squalene has primarily been used in Europe in older people, and not in children and pregnant women?

Do you, by any chance, have any studies on squalene's use in Europe that have tracked long-term auto-immune consequences? All I can find are survey studies done by squalene's manufacturers that tracked 2-4 week side effects. I can't find anything at all that followed up on people who received a squalene shot and looked specifically at auto-immune reactions. I'm not just focusing on GBS (the animal data said that rheumatoid arthritis was the main consequence of squalene, not GBS). Let me know if you can find anything - if it is as safe as they say over such a long term, surely these kinds of studies should exist?

I would love to talk to my pediatrician about it, but what I have found is that they are not very well-researched in the specifics - just read the CDC recommendation, and don't go any farther.
oh - preferrably, I'm looking for a study conducted by someone other than novartis, etc...
I haven't read through all of the postings, but Kelvin's doctors in Cincinnati say he should get the vaccine for sure (they are testing it there and so far, so good) and should get the regular flu shot this week, so that it has time to act prior to getting the other ones. I'm not sure yet either and I'm concerned. Michelle

I think the best place I can direct you to is a book that covers all the aspects of vaccines:
New generation vaccines, 3rd ed. Marcel Dekker, New York, N.Y.Page 225 onwards.

I have checked on google, and you can preview most of the pages covering squalene (MF59) as part of the free review.

This book was not written or funded by Chiron or Novartis, and the editors are all very well respected immunologists that would not risk their reputation by making outlandish or unsubstantiated claims.

As far as the research papers go, there will always be more papers published by the vaccine companies, for the simple reason they have to do so much research to prove safety and efficacy. We don't challenge the findings of the companies that stand to benefit from PTC124 or exon skipping, as we understand that they are the only ones researching that area. I think we need to ask ourselves whether or not we accept that this practice is no different when it comes to vaccines. Whilst conspiracy theory advocates will always scream the results are tainted, the simple fact is that squalene has been used since 1997, in all age groups, with no significant adverse side effects which would have certainly surfaced by now.

Just remember there will NEVER be a vaccine that is completely without risk, but the reason we use vaccines is because usually the pathogen they are protecting us against poses a significant risk to our health - far greater than the risk the vaccine itself poses.

From a personal note I like to way up the options (and outcomes):

1 Vaccinate - 4 possible outcomes:
i) Full Immunity no adverse reaction (best outcome)
ii) Partial Immunity no adverse reaction - 2nd shot may be required (good outcome)
iii) Adverse reaction resulting in serious complications(bad outcome)
iv) Adverse reaction resulting in death (worst outcome)
2. Don't Vaccinate - 4 possible outcomes
i) Influenza is not contracted (best outcome)
ii) Influenza is contracted with out complications (good outcome)
iii) Influenza is contracted with serious complications (bad outcome)
iv) Influenza is contracted resulting in death (worst outcome)

So the key is asking yourself which outcomes you can live with, and which outcomes you can't.

I hope that helps.


Mindy said:
oh - preferrably, I'm looking for a study conducted by someone other than novartis, etc...
Mindy, how about we tell them us parents will be the guinnea pigs for this vaccine if they'll also approve exon skipping for our boys without trials. Think they'll go for it? Sounds like a fair trade to me.
Hi Julie,
I completely understand the pros and cons. I am not vehemently anti-vaccination. But I do want to make an informed decision. And for me, a completely informed decision must include a long-term safety study that assesses the rates of auto-immune disorders after administration of squalene in a population that is younger than 65.

The only ones I can find are studies assessing the levels of titers (whether it's working), that also happen to track side effect rates for a less than 4 month period.

Surely, if it is safe, these studies should exist. But the problem is, I can't find them. That's what I need help with - I'm not trying to prove an agenda to convince people against the shot or anything. I'm simply trying to find the data that will assure me that it's safe, and so far, no luck. I'm not saying it's not safe, I just want assurance that is based on something other than assumptions.
Hi Mindy,

My understanding of squalene (and the reason why it is used as an adjuvant) is that as a "natural" substance it does not remain as squalene in the body for long - it is cycled into squalene oxide then protesterol cation then lanosterol which then becomes cholesterol......MF59 (the adjuvant form of squalene used in vaccines) only has a half life of 8hrs - 2 days. Therefore at such a low dose (10mg) and a single exposure, any side effects would be obvious in less that 30 days. So even a 3 month followup should enable sufficient time for adverse reactions to be observed.

It does invoke a stronger immune response and there are a lot of papers querying the biochemistry behind this, however cytotoxic reactions have not been reported as being increased against the general population.

There are a lot of papers out there outlining the safety of MF59 in children as this adjuvant is used in HIV vaccines for newborns, however as mentioned in a previous post, a lot of these are undertaken by the vaccine developers as they had to conduct the studies under their "duty of care" requirements. .

I know that probably doesn't help much, and I completely understand that you want to make an informed decision, My understanding of the matter is that no-one has funded long term studies into MF59 as within a couple of days there is nothing to study it has all been converted to cholesterol.

Hope you are keeping well,

Hi Julie,
That book seems helpful - as soon as I have some time, I'll go through and check the studies that are footnoted for the duration of follow-up.

I'm really not trying to be argumentative, but the half life argument doesn't convince me. There are a ton of substances - formaldehyde, for example, that have short half lives, but are suspected carcinogens, and people who are exposed don't develop cancer during the substance's clearance period. And auto-immune disorders (what I'm primarily concerned about) could very likely develop after that 30 days.

I don't doubt PTC's efficacy data, nor do I doubt vaccine manufacturer's efficacy data. But I would be very suspect of PTC's safety claims if they didn't plan to follow up long term with trial participants to monitor for long term outcomes.

I'll look through the book you posted for the papers on safety in newborns of the HIV vaccine. Again, what I'm interested in is whether these studies followed up with these patients after a year or several years to see if a larger percentage than normal developed autoimmune issues.

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