Discussion re "How do I delay vaxes?"

[Momtezuma Tuatara]

As a spin-off to another thread, on a different topic, this was said.

Lets remove the personalities and lets make this thread a constructive thread. No person picking or anything. Let's "issue pick" please.

And maybe this thread might be good enough that if someone comes along and throws that question out, all I need to do is take the URL from the archives and tell them to read this

Sirte said

Originally Posted by Sirte

If someone comes here and posts a very generalized "How do I delay vaxes?" thread, that person isn't verbally beaten to a bloody pulp with the sarcasm mallet. And even though MT admits that she isn't inclined to answer a thread that is that bare-bones, there are a lot of members here who will answer that thread - and they will do it with respect coupled with a good dose of "have you considered this aspect as well?"

Lets analyse this question, and why people like me might stay away from it.

Firstly, I have NO CLUE where the hypothetical person is coming from, so how am I supposed to start answering this question?

So here are the things I need to know:

1) What is the current health of your children?

The person may have normal children, but what say the situation is that they have immunosuppressed children? The answer would then have to be different, because immunology comes into it, and the fact that risks of vaccines are different for these children.

2) Do they have any congenital health issues?

Again, Down's Syndrome children have a metabolism that works differently, and though doctors don't admit it, they are prone to vaccine reactions.

3) do you have a family history of allergy, sensitivity to chemicals of any sort, atopy or eczema?

So maybe there is a family history of allergies, and perhaps that person should be seriously looking at those in the context of whether or not vaccines might be dangerous.

4) Are you delaying because you are scared to do it so young, or....?

Or maybe the person is scared about one particular vaccine, in which case wouldn't it be useful if they would articulate what the situation is, instead of such a broad question?

5) Is your choice to vaccinte based on fear related to the diseases?

Perhaps the issue isn't vaccines at all, but fear of the disease still being greater than a growing fear of vaccines?

6) Does the area you live in have chemical or environmental issues?

Another issue. People who live in areas with greater ecological degredation and environmental toxicities (such as the barrels of termite poisons that ground is soaked in prior to building, which vaporises over time and causes huge health issues) , IMO, run higher risks of side effects, but they also run higher risks of giving birth to a child with more serious birth defects and immunological problems. The problem with that, is that often people don't know their child has serious immune system problems until the : bulb pops up after the umpteenth visit to the doctor about something or other.

7) Is your baby breastfed or formulafed?

This makes a huge difference to the likelihood of vaccine reactions. In all my work with vaccine damaged babies, the majority of them are formulafed.

What is your family's diet like?

This too has a huge bearing on vaccine reactions, since mineral deficiencies can leave the immune system vulnerable and therefore INCREASE the likelihood of a reaction.

7) Does your child have gut flora issues?

This may seem irrelevant, but its not. The gut is 70% of the immune system and if there is something wrong here, the rest isn't going to work right, and this too will result in a complete re-evaluation of risk analysis.

~~~~~~~~~~~~~~~~~~~~~~

Anyway, that's a start.

Let's put here issues that we see, in a non-personal way, so that people who come with questions as broad as this, can do their thinking without feeling they are being picked on.

And it will save a whole lot of us, a heap of time and energy, which if we expend now, we might not have to expend later.

[Momtezuma Tuatara]

answer a thread that is that bare-bones

I need to comment on this.

A question like "How do I delay vaxes?" or "When is the MMR safe to give?" isn't a barebones question in terms of how I view the word "bare-bones". Bare bones is very basic and very simple.

The problem is a question like either of those two, is too complicated, because far from being bare bones, its lack of clarity results in too many possibilities, therefore a question along the lines of:

1) I'm wanting to delay vaccines in my normal breastfed child. He/she has no allergies, we have no family history of it, but:

Possibilities: a) I want to wait until his immune system is more developed

or

b) I'm scared of the diseases but also scared to vaccinate early, so want to delay as a compromise. Does anyone have any ideas to share?

With this sort of question, at least you have some idea where to start.

But again, such a question, might need more questions, so here's a hypothetical sequence:

Question: Are you scared of all the diseases or one in particular and why?

Answer: My aunt had polio and pictures of iron lungs and calipers float in front of my eyes every night.

Question: Did anyone else in your family have polio?

No, just my aunt.

Question: Are there any possible reasons you can see as to why your aunt got polio and all the rest who were not vaccinated did not get polio

No.

Do you know what the factors for susceptibility for polio are?

No.

Now, you can say that I'm still not answering the mothers questions, and she might say I'm saying she doesn't know what she's talking about, and see this as being mean.

But the reality is that people who know the susceptibility factors, would be able to ask the right questions, and pretty quickly figure out why "aunt" got polio and the rest did not.

Once they see that, the visions of iron lungs and calipers might not float through their heads, and they might not be susceptible to media blather like when the Amish children came up with four polio vaccine virus isolates, yet got no polio, but you would have thought the world had come to an end.

So in order to answer the "simple" question, to effectively make a parent think, or find the right answer for her situation, you need to know a lot more than the "bare bones".

So, say you point her towards all the polio information and she still can't overcome that fear, then you discuss the healthy child.

This is another difficult topic, because as you know when I posted a case history of a case I had done last year, some parents think their children are normal when they are not

This particular child had the MMR and became seriously sick. The mother applied for compensation, with the backing of a doctor on the basis that the child was perfectly normal beforehand and damaged afterwards.

Unfortunately, I trashed the whole case, becuase when they sent me all the medical files, this was what I had to put in the case work-up:

Between 1 July 00 to 31 January 00, in a seven month period right up to receiving MMR, Xxxxxx had had 7 ear infections, 8 antibiotic prescriptions, 1 Rotavirus infection, 2 Thrush infections, 2 Pseudomonas infections and various rashes.

This mother was a nurse and thought her child was normal .

just maybe this child was immunocompromised?

Yup. yet neither parent nor doctor had considered the possibility.

[HeatherHeather]

Having (once again) come out of lurkdom . . .

I did not even open that thread and I typically would not b/c I have no clue what the poster's question really is.

How do you delay vaxes?

My answer would be "you don't get them on the aap or cdc or whoever's schedule". But seriously, you delay vaxes by just saying no.

Just my 2 cents, and I will probably forever stay away from questions like that.

[Jen123]

I think you are right. Mothers who come asking wide range questions need to narrow the field for us so we can more accurately help them.

I want to delay vaxes for my baby due in March. My husband has an autoimmune disease. Which vaxes have links to autoimmune problems in the future?

and those wanting e-hugs and smooshy warm feelings should tell us that in advance as well.
it's hard to delay vaxes and go against the norm. But on the other hand I want my baby protected. Man this is hard. I could really use some hugs.

I really think many of the people who come don't know what to do with us. They see our answers as argumentative. In reality they are intrusive , so we can get to the heart of the issue..but those are the folks wanting comfort and no advice. They should tell us that up front.

[jessicaSAR]

In my experience, the easiest thing to get my head around when I first started to think about vaccination was that we get too many shots too early. So the first step in the thinking process was delayed or selective vaccination, and immediately I wanted to see a list of how this is done (like Stephanie Cave's book) because I didn't understand anything. I didn't know what shots were given when and why, whether they had to be done in a particular sequence at a particular age etc... So, seeing an alternate vaccination schedule gave me a place to start. I didn't have to think about MMR or chicken pox or polio or HepB, and I could just focus on learning about HIB and Prevnar and DTaP.

When I see someone say that they have fully researched vaccines and they just want to know how others have delayed or selectively vaxed, honestly it makes me a bit suspicious, or else we just have very different understandings of what "fully researched" means. To me, fully researching a vaccine involves understanding the disease, esp who is susceptible to it and when, who is likely to be harmed by it, how that susceptibility has changed over time, and how the disease can be treated. It also means understanding the reported reactions to that vaccine and who is susceptible to those reactions, what is in the vaccine and how and when people are most likely to be harmed by those ingredients. I am rambling here but the bottom line is when I came to the point where I felt even moderately comfortable saying I had "fully researched" a shot (and I should say I am so up to my ears in research that I still can't say that without laughing), I had plenty of information to make the determination about selective or delayed vaccination all on my own.

In other words, the question itself indicates to me that the person is really just getting started. That said, I do think it is valuable to have delayed schedules available but only as a starting point, and not as an end point. Ultimately, they are a research short cut, and there is no way to really get there but right through the complicated mess of it.

[54321]

great start.
I, too, scan the posts..there are so many posts a day..you skip some. That opener needs to get specific.
I began searching for answers as a friend of a mom who had a son who "developed" autism. Normal development and began losing language and eye contact and regressing. That mom bf until baby was 2, heathy eater, etc. Back then my concern was thimerosal. And I remember after hearing it would be phased out..I breathed a sigh of relief that I would never have to worry when I eventually became a mom. I could vaccinate without worry. Then my concern shifted to environmental sources of mercury..and my fish eating days ended and my fear of my mouth full of amalgam started.
And then I learned about the other toxins in vaccines..aluminum, formaldehyde...then I started reading about the rise in auto-immune disorders..and that even if we believe vaccines will protect against infectious disease..at what cost? How would I know if my child had susceptibility to one of these childhood disorders? Then I started to read about the huge mistakes of the past..the rotavirus, the whole cell pertussis, etc...these newer vaccines that didn't even exist when I was a child now were the panacea for the new 911 illnesses. Did I really want my child to be a part of something that 10 yrs from now we shake our heads about? Then I started to read that vaccines could not guarantee immunity. And that many of these diseases...if they did occur..which is one of the 1st things a new parent considering not vaxing fears..could be treated and then the child would have a natural immunity.
Then an entire other issue comes up...when you do not vax..or even are considering it..you are still a minority..and people may judge you..and fear your child bringing illness..or always have a story about someone who almost died of something that now has a vaccine. It is scary to go to mommy groups where they share about the last well baby visit and the "baby shots" and look for your input and you delicately change the subject.
We want so very badly to do what is right...and it is such a hot topic...and the politics of it do not help...If there were simply studies of unvax kids vs vax..and it were an open choice for everyone..and everyone saw it as a choice..cause they do not..people would do what they felt was right for their personal situation and everyone could respect that.

[Talula Fairie]

I think we should make this a sticky or something!

The questions "how do I delay" or "why shouldn't I vax" are just too broad. There are so many reasons, and so many variables.

[Rie]

Thank you so much for addressing this. It is helpful for a newbie like myself to realize just how general those questions are. Duh, I know, but when you first begin it is so overwhelming.

With the vax choices not openly spoken about in many circles, at least not mine, its hard to know where to start. I started researching the vax issue (knowing I wanted to delay) months before my Ds was born (Oct '05) and only recently feel like I'm getting a grasp and not drowning in it. I've found the whole process to be very emotional and maddening, esp since my 1st born was fully vaxed due to my ignorace and not yet knowing a mothers intuition rules!!! He is healthy, but I am so thankfull I breastfed him those first 2 years!! This time around I swore I would be proactive and never feel at the mercy of my childs health care provider. Now I just need to find a supportive or atleast friendly Dr.

Just wanted to say thanks! I was only recently directed to this site and it has been a wonderful resource!

I found your hypothetical Qs & As very helpful!

[curlyfry]

This thread should be titled: Coming here with a question? Read this first!!!

Great idea MT

[Momtezuma Tuatara]

Rie, that's why I think its good to do it this way, and not by answering a specific person's questions, because one of the complaints here is people who ask questions and come across too aggressively or combatively, when we are not doing that at all.

It's just that when you are questioned, it sometimes feels like your prior premise is being challenged.

The problem for us, is having been "there" and now being "here" we know how complex the issues are. When you are "there" because you don't know what you don't know, you don't realise that there are a huge number of issues to be considered.

Your oldest is very lucky to be breastfed for that long, because in my experience, babies who are fully breastfed have a better chance of getting through shots because the mother's immune system continues to modify the babies response to the vaccines, so reactions appear to be more blunted.

BUT,,, that is not always the case. That is a general comment, but the minute I wrote it, two cases came to mind where it made no difference at all....

There are also some other basic questions that people who are looking at delaying need to consider, though they may think these questions are irrelevant.

Obstetric history is very important.

One of the cases I did in USA, the mother had serial e.coli infections which were treated with antibiotics. I don't know how to put this politely, but she only passed bowel motions every 14 days s Can you imagine? But people with colon stasis like that have very high levels of e.coli which do adversely affect the baby.

She also had gestational diabetes and only ate right the day before she had to have a glucose test to "prove" to the doctor she was okay.

She was induced because the specialist said that she had no amniotic fluid and had Strep B, but I was never able to find a positive test in any file for the Strep B.

The baby was born 5 weeks early, and the video shows a GREY baby - I kid you not, he was keyboard grey... and grunting. Awful. He was rushed off and had hypoglycemia and had hugely aggresive PICU treatment. The apnoea monitor went off so often that the nurses assumed it was a malfunctioning unit and turned it off

The baby's blood tests were highly abnormal with liver functions off the map, and the baby was given Hep B at birth, and had jaundice for 8 weeks.

There were many issues. Gut issues, failure to thrive, non-responsiveness, strange eye movements which I suspect were seizures, but what would new parents know.

Limb jerking etc... no tracking of the parents faces though he would turn to try to locate very loud noises but not very precisely.

They had him to the paediatrician every week for something and in the end felt uncomfortable because he kept telling them he was fine, and they were neurotic.

Strange nose bleed at 10 weeks...

Two weeks later the next round of shots and everything seemed to fall apart, but by this time they were so paranoid about being called neurotic they delayed going to the doctor, and by the time the baby was bad enough for them to be scared enough to go, it was too late.

I can't tell the rest for two reasons.

1) Legal

2) too distressing.

But here were parents who were concerned about their baby, but no-one else could see the wood for the trees, yet when you looked at the case backwards, and compared all the test results you could clearly see there was a problem.

But you know what?

Not one doctor lined up all the test results and looked at the obstetric history to see if they could see a bigger picture than they assumed.

So these are things that I know, that others don't know.

So if a mother comes here, asks a broad question, and I ask her a more detailed question, its going to be hard, because she might consider something abnormal to simply be a variational quirk, and nothing to worry about.

This is why its very hard for parents. Lots of parents whose children had seizures after vaccines never knew they were seizures, because they only seizure they knew about was a grand mal, which looks spectacular. But there are other sorts of seizures, like petit mal, absense, complex partial, and parents can easily miss them becuase they ASSUME that a seizure is only ONE thing.

It's only when they've sat down with a video showing what the different seizures look like that the brain goes "Oh, so that was what that was..." but by then its too late.

For instance, if your child is damaged, and is having those seizures, its no good trying to say, six months later, I remember that... because they assume you are lying. Unless you know these things, you might not spot them. And if and when it happens, you need to know what the different types of seizures are, so that if they happen, you DO go to the doctor and you MAKE him/her write it into the files, even if they don't believe it. And if necessary, you MAKE them do a sleeping EEG, because if they get bigger, and then change types and get worse, you need a record.

The first EEG might be (and often is) normal. but often when the seizures change and become worse, the EEG becomes abnormal. They might still try and tell you its an evolving disorder well yeah, you know? He had a vaccine, had a reaction and its progressively deteriorating. But the doctor doesn't mean that. The doctor means he had it from the start, and it would have evolved anyway.

THIS is a crucial concept in delaying shots.

If you give shots early, there isn't enough time to prove, if your child suddenly has seizures, that it was caused by the vaccine. Most likely, seizures won't happen, but they can, and they do, and I know, because that was my job.

So if you delay, how long do you delay? What is safe? There is no safe age.

AS I posted on another thread, a case I did in 2002 was this:

child perfectly normal at age five no problems whatsoever. Received MMR.

Now:

This little girl hasn't been diagnosed with any of the "epilepsy syndromes", genetic or otherwise, including those above. The neuro has tested for them, however, for exclusionary diagnostic purposes; to rule out anything progressive. Her case is documented as intractable or medication-resistant, but that hardly qualifies as much of anything, IMHO. Her seizures are classified as complex partial multi-focal secondarily generalized. She experiences a variety of morphologies, including atonic, tonic-clonic, gelastic, and status epilepticus. Seizure clusters are still occurring; usually one to two times per month resulting in about 18-25 seizures.

child's hormones have gone berserk, and she had her first period on her ninth birthday.

She continues to perceptibly lag behind her peers cognitively. For almost two years from 2002 thru the summer of 2004, she was kept drug free becasue of:

a) significant cognitive brightening -- still slow, but much improved after the med change in 2002;

(b) increased number of consecutive seizure-free days between clusters -- monthly frequency remained about the same at 20-25; but she would usually enjoy 8-14 days in a row in between.

But in the spring of 2004 she began to vomit during ictus, and the symptoms worsened to the point where twice she nearly died, so they put her on Zonegran, which eliminated the vomitting, but both positives above disappeared.

She has multiple food allergies, digestions problems; she can no longer dance, or even walk competently and requires a wheelchair. She is painfully shy, and has lost considerable language, and no longer can memorise or learn the way she could.... There are also other problems, but that's enough....

So even in a child that is seemingly normal, it actually isn't possible to answer the question of how long is it safe to delay?

The only advantage for these parents in delaying, was that they could prove from all previous medical records that this girl was normal at 5, therefore they couldn't be fobbed off with comments about "Oh, its an evolving genetic disorder and would have happened even if she hadn't had vaccines."

and anyway, the evidence in the files was adequate to prove mumps vaccine encephalitis with permanent sequelae. {editted to add that the evidence wasn't obvious. Four experts had gone through the files and missed it, because it was never officially recognised, or written into the files. They completely missed it. When I go through the files, the first thing I search and ring, and the results of the blood tests and hidden way at the back was a hugely high mumps titre count that no-one had ticked or seen, even though it had asterixsseesss (however you spell that werd).. next to it.

When I found it, I then had to go and research mumps encephalitis, find case histories, and then find studies of case histories and series of cases after vaccination. The mumps fitted like a hand in glove, yet the CDC experts had been arguing that it was coxsackie virus, echo virus or adenovirus, when the titres for them were so low that that was totally improbable, and further the symptoms were NOTHING like you'd expect with those viruses.

So you have to be prepared for the fact that world-renowned experts are masters at creative thinking.

Waiting 5 years, gave the parents the proof they needed that she was normal. The Mumps titres gave them the proof they needed that world renowned experts' creative thinking, was just that. The medical literature gave the judge the proof she needed to toss out the creative thinking of world renowned experts with a few accompanying creative comments of her own...

But of what use was waiting five years? It didn't keep this child safe, and having a defence, and monetary compensation, doesn't bring their child back.

So not only are the issues highly complex, but the reality is that none of us can give anyone definitive answers, because every child is a unique walking laboratory which might defy the so-called "norm".

[rootzdawta]

Very Good Idea MT. . .your post should indeed be a sticky

IMHO, if you are looking for someone to tell you what to do, this board can be very infruriating because no one here does that. Why? Because if you've really read all you can read and thought all you can think about the vaccination issue, it has to, at some point, become apparent what you can and what you cannot live with in terms of vaccinations. This differs from person to person. Also, I am responsible for my child so how can I be looking for someone else to tell me what to do? I think folks should understand that these boards are not for direction or guidance in how to parent your child. They are for input/improvements/suggestions to add on to the way you have already decided to go or are leaning toward. If I depend on someone else to tell me and what they tell ne is wrong, who's to blame? I'd like to blame the other person but in reality, it's just me to blame. Just my 2 cents. Sorry for rambling . . .

[Momtezuma Tuatara]

rootzdawta, if you were rambling then my dirge is unclassifiable

[joyfulone]

I agree, MT's post would make a very valuable sticky. I had no idea of the best way to post on this forum when I first came here the night b4 my dd's 2 month appointment. I was just feeling very overwhelmed, sleep deprived, and desperate for someone's advice or support since none of my friends and family had open minds about non-vaxing, and I probably could have received better support from the board if I would have had a better idea about how to post my questions here.


joy

[Momtezuma Tuatara]

It's not just that newbies find it hard to know how to approach the issues, but often they are super-sensitive. We don't know how to approach a newbie when we know there are questions that need to be asked, because often supersensitive people take offence where none is intended.

Add into that mix the fact that trolls are such a regular feature of this board, and really create mayhem when they do come. Unfortunately, you arrived on the back of two read doozers, and the board was fair bristling on the chin, and the gloves were on, with corners marked...

So if you put all that mix together, then this issue, being such an emotional one, has a much greater potential to huge misunderstandings than any other issue.

Internet is very "autistic" in a sense. And very public. We can't see and hear and feel the fear. People either don't want to, or cannot say what they really need to say, and so you end up doing a dance trying to figure out what they are not saying. Sometimes you succeed, sometimes you don't. But either way, things can easily go wrong here, and maybe doing a few threads like this would be a help.

But hey, at least we got you sorted huh?

[Momtezuma Tuatara]

Actually thinking out loud.

WE have two stickies.

The purpose of this forum, and the threads to archive thread.

Perhaps we needs a third sticky which could be entitled "Before you read or post here, read this."

That thread could contain key links to archives.

The first link might be to tracy's bolus dose.

The second link might be to this thread.

The third link might be to another thread.

Perhaps we need to get together as a board and go through the threads and sort out what is best for new people to read before they delve into the actual board.

Of course there will always be people who don't read stickies and who post without realising that they are there, just as some people don't realise there are archives for quite some time.

You know how, sometimes the first time you go to a board, a pop-up comes up, and it says "If you want to read and post here you have to read this first, and click the read bit at the bottom."

Well, I'm even wondering if there shouldn't be a pop-up which only pops up the first time someone comes here (assuming their browser is set to allow a pop-up) which basically says that its in your interest to read the three stickies before you go anywhere else sort of thing...

I'm just thinking about this, because everyone gets frustrated when we get criticised for being abrupt, or asking questions, and people need to realise that the communication problems on this board are accentuated by many issues not in the control of either side.

If somehow people coming here can get a safe grasp of key issues so that they understand why questions are needed, or why things can happen, then both sides might be able to be able to "meet" more comfortably?

Any thoughts?

[LongIsland]

Originally Posted by Momtezuma Tuatara

Perhaps we needs a third sticky which could be entitled "Before you read or post here, read this."

Great thread MT!

Although I don't think it would keep the trolls away, I think this idea (above) would avoid some potentially adversarial threads.

[BetsyPage]

Even if this thread doesn't get stickied, I'm bookmarking it... excellent, thoughtful thread!

[Momtezuma Tuatara]

BetsyPage,

Easier to save it to hard drive, and if its added to save again...

If there was a major computer crash at Mothering, it might get lost. I save most threads to my hard drive, that have posts that could be useful...

If you don't want to use the space, save if to hard drive, then cut it to CD, and delete from hd.

[54321]

AHHHHHH!
I Just finished reading your post MT and scrolled to read the rest of the replies.
On that note..I like the pop up idea..
But...for a more seasoned researcher..one who took at break away from the research and the emotion..several months ago..having made my mind up for the time being..but completely aware that even what I knew was a mere tidbit of the info out there...REALLY wanted to come back to this issue and read.."after you wait 2 yrs..the chance of side effect greatly reduces..to the point where the chance of contracting the disease is more dangerous than the side effects you may encounter"
Why?? because that would make things easy, I guess..make me feel like my ability to have kept her life as healthy and toxin-free as possible has paid off..and I can just get in with the majority..
I really wanted to believe the thimerosal was gone..and that some of these vaccines did work and had their place and it was the mere number and the starting too young thing that was really the problem.
Ughh.

[Tracy]

this thread needs to be archived.