Preemies and the RSV vaccine

[corrabelle]

My sister just had twins at 28 weeks on friday. Yesterday the nurses in the nicu gave her and her husband a brochure on rsv and the vaccine, and said that come autumn (rsv "season") they should vaccinate-"especially" because the babies are preemies.

Now, we're normally a fairly anti vaccine family all around. I suffered a major injury as a child an didn't vaccinate any of our children. My mom wished that she hadn't. (She honestly thought it was law-up until my injury, and didn't vax after that.)

Being so tiny and delicate, it's hard to know what is really medically necessary for these babies and what isn't. Of course the doctors are going to be telling her to do this-and she's having a really hard time deciding what to do.

Normally, she wouldn't vaccinate. (that was her plan.-these are their first children.) But she's terrified that they *will* catch rsv just by being in NICU. (Which, unfortunately is possible-and they will most likely still be in the nicu come october, when they were supposed to be "due".) They were on ventilators and are now on c-pap, so breathing is already a struggle.

Any words of advice, or articles out there regarding rsv vaccine and preemies? I've been searching but can't seem to find a lot other than people complaining that they have to pay for the rsv vaccine. Apparently it's not routine, so it's not discussed a lot. I honestly know nothing about it. 

We're in Canada, so we wouldn't have to pay, but that isn't the issue at hand.

[Marinlea]

I don't know much about RSV except that it can be deadly. My guess is that is kills many, many, many more infants than the vaccine.

I'm not trying to tell anyone how to raise their children, just to research both sides of the vaccine equation-what is the incidence of side effects due to vaccines and also, what are the risks of actually catching RSV or whatever disease the vaccine targets? How many babies die of RSV, measles, whooping cough, dyphtheria versus die of the vaccines? While it does sometimes seem like there are way too many vaccines, there was a time when there were no vaccines and people had to keep their children away from playgrounds and school every time a polio case was diagnosed. Back then parents rushed to have their children vaccinated because these diseases were rampant and parents saw first hand how deadly they were. Now we become complacent, but those viruses and bacteria are still out there. Right now, an unvaccinated child has what is called "herd immunity"-everyone around him has had the vaccine, so there is nobody to give him the illness. As more and more people choose not to vaccinate, there will be more and more susceptible children and more holes in the herd immunity for the disease to slip through.

Just my take and yes, I am a scientist. I hope I don't come off condescending. Believe me, I don't mean to. I just hope people don't generalize among vaccines (varicella vaccine-aw heck, we all had chicken pox as kids and it was itchy but not life-threatening. Measles is a completely different beast-it kills and can cause lasting neurological damage). The link with autism has been completely debunked by some of the best research institutions in the world. It does stink to have a miserably feverish child up all night because of his shots, but think how much worse it would be to have a child struggling for breath because he has whooping cough?

[corrabelle]

Originally Posted by Marinlea 

I don't know much about RSV except that it can be deadly. My guess is that is kills many, many, many more infants than the vaccine.

I'm not trying to tell anyone how to raise their children, just to research both sides of the vaccine equation-what is the incidence of side effects due to vaccines and also, what are the risks of actually catching RSV or whatever disease the vaccine targets? How many babies die of RSV, measles, whooping cough, dyphtheria versus die of the vaccines? While it does sometimes seem like there are way too many vaccines, there was a time when there were no vaccines and people had to keep their children away from playgrounds and school every time a polio case was diagnosed. Back then parents rushed to have their children vaccinated because these diseases were rampant and parents saw first hand how deadly they were. Now we become complacent, but those viruses and bacteria are still out there. Right now, an unvaccinated child has what is called "herd immunity"-everyone around him has had the vaccine, so there is nobody to give him the illness. As more and more people choose not to vaccinate, there will be more and more susceptible children and more holes in the herd immunity for the disease to slip through.

Just my take and yes, I am a scientist. I hope I don't come off condescending. Believe me, I don't mean to. I just hope people don't generalize among vaccines (varicella vaccine-aw heck, we all had chicken pox as kids and it was itchy but not life-threatening. Measles is a completely different beast-it kills and can cause lasting neurological damage). The link with autism has been completely debunked by some of the best research institutions in the world. It does stink to have a miserably feverish child up all night because of his shots, but think how much worse it would be to have a child struggling for breath because he has whooping cough?

While I don't know a lot about RSV except that most children do get it in infancy at some point, I've heard the "deadly" argument about a lot of other illnesses too. This is why it's a bit of a struggle.

I've heard that Chicken pox, mumps, measles...everything under the sun that there's a vaccine for, labelled as "deadly".

Yes, sometimes they are. But much more often than not, they're treatable. Also, polio was on the decline before the vaccine.

I'm not making light of RSV (or any other illness) in preemie infants-I do agree that they would have a much bigger fight ahead of them than the average infant.

That being said, they also have such fragile, new little immune systems that aren't developed, that vaccines could actually injure.

And while there's some truth to the "herd" community as well, this obviously isn't always the case, as vaccinated children still get these illnesses, sometimes even worse than those who aren't vaccinated, because their immune systems are so compromised.

Having suffered from a vaccine injury, the argument of "the benefits outweigh the risks" has always been really hard to handle, as I know first hand that this definitely isn't always the case.

The only reason they are entertaining the thought for this vaccine is because they already have so much against them- Which is the same reason that they're worried about doing it.

It's not my decision, bottom line. But they're having a hard time making the decision, as would I. I'm honestly not sure what I would do, which is why i'm asking questions.

[ma2two]

There is no RSV vaccine. The preventative medicine, palivizumab, is a humanized mouse monoclonal antibody. 

Monoclonal antibody:

"Any of a class of highly specific antibodies produced by the clones of a single hybrid cell formed in the laboratory by the fusion of a B cell with a tumor cell and widely used in medical and biological research."

http://medical-dictionary.thefreedictionary.com/monoclonal+antibody

Here is what the CDC has to say about RSV.

http://www.cdc.gov/rsv/clinical/prophylaxis.html

This is the package insert for palivizumab, followed by the Patient Information sheet.

http://www.medimmune.com/pdf/products/synagis_pi.pdf

corrabelle, I'm sorry that you, as a vaccine injury survivor, had to deal with that post in the "I'm Not Vaccinating" forum, which is supposed to be a safe place for

non-vaccinators.

Edited by ma2two - 8/17/11 at 12:14am

[corrabelle]

Originally Posted by ma2two 

There is no RSV vaccine. The preventative medicine, palivizumab, is a humanized mouse monoclonal antibody. 

Monoclonal antibody:

"Any of a class of highly specific antibodies produced by the clones of a single hybrid cell formed in the laboratory by the fusion of a B cell with a tumor cell and widely used in medical and biological research."

http://medical-dictionary.thefreedictionary.com/monoclonal+antibody

Here is what the CDC has to say about RSV.

http://www.cdc.gov/rsv/clinical/prophylaxis.html

This is the package insert for palivizumab, followed by the Patient Information sheet.

http://www.medimmune.com/pdf/products/synagis_pi.pdf

corrabelle, I'm sorry that you, as a vaccine injury survivor, had to deal with that post in the "I'm Not Vaccinating" forum, which is supposed to be a safe place for

non-vaccinators.

I was wondering about this...but decided to tread lightly as she only has 10 posts and probably doesn't realize entirely where she was posting. (at least that's what i'm going to go with.)

Thank you for this information-more than i've been able to find so far. Why on earth would they be calling it a vaccine then...simply because it's injected? (I have heard people refer to the k shot as a vaccine...)
 

[corrabelle]

I would also, like to stress,  (after re-reading the post by Marinlea )that Autism is not the only concern that parents have with vaccines. I wouldn't say that the connection has been entirely "dubunked" either.

[Marnica]

I think you need to read the thread _ can we find common ground_ in the main forum. Pretty much everybody is in agreement no matter what side of the debate one falls on that provaccine viewpoints have no place in this forum and anti vax posts have no place in the selective/delayed forum. Posts such as this are appropriate for the main forum. Besides all the arguements you have brought forth have nothing to do with RSV since it is not a "vaccine" per se.

 

Originally Posted by Marinlea 

I don't know much about RSV except that it can be deadly. My guess is that is kills many, many, many more infants than the vaccine.

I'm not trying to tell anyone how to raise their children, just to research both sides of the vaccine equation-what is the incidence of side effects due to vaccines and also, what are the risks of actually catching RSV or whatever disease the vaccine targets? How many babies die of RSV, measles, whooping cough, dyphtheria versus die of the vaccines? While it does sometimes seem like there are way too many vaccines, there was a time when there were no vaccines and people had to keep their children away from playgrounds and school every time a polio case was diagnosed. Back then parents rushed to have their children vaccinated because these diseases were rampant and parents saw first hand how deadly they were. Now we become complacent, but those viruses and bacteria are still out there. Right now, an unvaccinated child has what is called "herd immunity"-everyone around him has had the vaccine, so there is nobody to give him the illness. As more and more people choose not to vaccinate, there will be more and more susceptible children and more holes in the herd immunity for the disease to slip through.

Just my take and yes, I am a scientist. I hope I don't come off condescending. Believe me, I don't mean to. I just hope people don't generalize among vaccines (varicella vaccine-aw heck, we all had chicken pox as kids and it was itchy but not life-threatening. Measles is a completely different beast-it kills and can cause lasting neurological damage). The link with autism has been completely debunked by some of the best research institutions in the world. It does stink to have a miserably feverish child up all night because of his shots, but think how much worse it would be to have a child struggling for breath because he has whooping cough?

[Marinlea]

The whole idea behind a discussion forum is discussion, right? If we compartmentalize people's viewpoints into pro and con sections, then all we're doing is agreeing with each other. I'm not trying to tell you what to do, I just wanted to put information out there that would be useful to anyone trying to decide between vacc/nonvacc. I am not trying to offend anyone.

[corrabelle]

Originally Posted by Marinlea 

The whole idea behind a discussion forum is discussion, right? If we compartmentalize people's viewpoints into pro and con sections, then all we're doing is agreeing with each other. I'm not trying to tell you what to do, I just wanted to put information out there that would be useful to anyone trying to decide between vacc/nonvacc. I am not trying to offend anyone.

Not necessarily. The reason "I" don't vaccinate may not be the same reason that others in this section choose not to. The entire point of having sections in the forums like this is to seek advice from like minded people.
When I come into this area and ask about vaccines, i'm not usually faced with with, well, everything you just said in your first post.
These are things that we've all heard before, but have discovered that many of these "facts" are often repeated but often false, or for some reason or other have chosen not to vaccinate despite whatever facts might indeed be true.  
 

I was asking the people, who normally don't vaccinate, if they feel there would ever be an exception in a case like my neice and nephew, in their like-minded opinion. 

This is the same reason that many  people choose to go to a naturopath rather than a doctor. Or choose different doctors when they want a second opinion. 

Not because they always "agree" with you, but because you know that they follow the same school of thought.
(My family doctor actually fully supports our decision not to vaccinate, and encourages delayed vaccines for those who do choose to vax.)

I've already decided against routine vaccinations a very long time ago, so to re-argue that is somewhat pointless.

To add just a tiny cherry to top the top of this lovely thread, it's not a vaccine. I'm glad to know that now, and will research the treatment further.
Ma2Two, I passed the links on to my sister and brother in law, they were thankful to recieve it. No one in the hospital has really given them a straight answer thus far, and they're far too preoccupied to go plowing through articles right now.

[kathymuggle]

Originally Posted by Marinlea 

The whole idea behind a discussion forum is discussion, right? If we compartmentalize people's viewpoints into pro and con sections, then all we're doing is agreeing with each other. I'm not trying to tell you what to do, I just wanted to put information out there that would be useful to anyone trying to decide between vacc/nonvacc. I am not trying to offend anyone.

Gently (because you are a newbie and you are not expected to be up on the ins and outs of MDC   ):     MDC has this forum which does not host debate for its own reasons.  If you want debate (and it is cool if you do) you need to post in the vax section.  You should not simply circumvent the user agreement. It sounds to me like you are more a selective/delayed vaxxer - this a subforum for that as well.

User Agreement:

http://www.mothering.com/community/wiki/not-vaccinating-forum-guidelines

[kathymuggle]

Originally Posted by corrabelle 

I was asking the people, who normally don't vaccinate, if they feel there would ever be an exception in a case like my neice and nephew, in their like-minded opinion. 

To answer this question:  I do not vaccinate, but your case would have me looking into it.  I would look at things like:

chances of getting rsv - any way to lower this without vaccines?

dangerousness of rsv for their age, etc.

effectiveness of vaccine

risks of said vaccine

risks of said vaccine to a preemie and a twin (are twins at higher risk of adverse reactions?)

was your reaction likely to be genetic - and how likely is it that your sisters kids would have one?  

You could cross post on the special needs board - maybe someone has some insight or info.

Good luck and congrats on the new additions to the family from a fellow Ontarionian.

edit to add:  some of the above may be moot as it is not a vaccine you are researching, lol.

[corrabelle]

Originally Posted by kathymuggle 

To answer this question:  I do not vaccinate, but your case would have me looking into it.  I would look at things like:

chances of getting rsv - any way to lower this without vaccines?

dangerousness of rsv for their age, etc.

effectiveness of vaccine

risks of said vaccine

risks of said vaccine to a preemie and a twin (are twins at higher risk of adverse reactions?)

was your reaction likely to be genetic - and how likely is it that your sisters kids would have one?  

You could cross post on the special needs board - maybe someone has some insight or info.

Good luck and congrats on the new additions to the family from a fellow Ontarionian.

edit to add:  if there is a vax?  it seems from a post upthread there is no vax.  hmmmmm.  Must read

It's difficult to say if the reaction is genetic...since none of my siblings were vaccinated after that reaction;) And none of our children either.
Our family does seem to have a tendency towards inflamation though, and my other niece (other sister's daughter) is seriously allergic to several things, and has sensitivities towards many others.
Because of her severe egg allergy, she will absolutely, never be vaccinated.
I though, am not allergic to anything, and still had a major reaction-so I've always felt that it could really happen to anyone.

We really don't know yet, with these two, what their allergies and sensitivities will be. I've seen the ingredients now in this (which yeah, apparently is not a vaccine) and will have to think it more thoroughly based on these ingredients.
Biggest concerns here are probably altering/harming their tiny, partially formed immune systems and allergic reaction. They were given antibiotics at first, but now that they know that there's no infection of any kind (their early birth made it a bit of a question) they've been taken off those medications.
 

I absolutely will look into preventative measures-although i'm not sure what control *we* would have over that if they're in the NICU.

And yes, effectiveness is a huge factor. I'm not sure that it's effective enough to warrant the treatment, with the possible risks. On the other hand, rsv in babies this tiny would be pretty scary.

I'm really glad that it's *not* my decision, but I really feel for my sister and her husband. They have a lot of decisions to make over the next few months!
 

[LisaSedai]

But she's terrified that they *will* catch rsv just by being in NICU. (Which, unfortunately is possible-and they will most likely still be in the nicu come october, when they were supposed to be "due".

They keep babies who have been outside the hospital separate from those who have only been in hospital- so all those in that NICU should not have been exposed to RSV, right? I suppose a staff member or visitor *could* give one of those babies RSV but I would hope no one coming down with a respiratory illness would go anywhere near the NICU.. I'd worry when they got out of NICU though and were exposed to more people.

Gain and grow wishes to the little ones. Hope they are safe and home soon.

[corrabelle]

Originally Posted by LisaSedai 

They keep babies who have been outside the hospital separate from those who have only been in hospital- so all those in that NICU should not have been exposed to RSV, right? I suppose a staff member or visitor *could* give one of those babies RSV but I would hope no one coming down with a respiratory illness would go anywhere near the NICU.. I'd worry when they got out of NICU though and were exposed to more people.

Gain and grow wishes to the little ones. Hope they are safe and home soon.

You would think! A couple of years ago though there was a huge outbreak at the same hospital, in the NICU. They are *super* strict about handwashing and visitors...(no one but parents are allowed in) but it's still a problem. The nicu nurses said that they were in danger particularly because of their being in the hospital.

Of course, you're right, they could contract it outside of the hospital as well, indeed.

[Peony]

This issue has come up many times over the years on the NICU forum, you should search the posts there. 

[~Adorkable~]

im wondering if you might go post something in the NICU board, from my understanding it is usually just offered to premies and so they might have more experience learning about it. 

i had a set of winter twins and thankfully missed them being labled premies by 6 hours, but the one thing i worried about was RSV since i was not offered the shot and it cost a ton to get on your own, i thankfully had no trouble

[corrabelle]

I didn't know that there was a preemie/nicu board! Thanks!

[rik8144]

In my unit, we don't give the RSV injection until they go home. They typically start the series the day of discharge. In the 6 years I have worked with our NICU, we have never had an RSV infection in the unit.

My son (A full term 8 pound infant) caught RSV at 6 weeks old. He was on around the clock nebulizers and had to sleep in a simi-reclined position. He couldn't breath well to eat, sleep, etc. The stuff clogging up his nose was impossible to remove no matter how we tried so we had to just wait it out. It took about a week for him to start breathing better. He has never been vaccinated for anything. Seeing him struggle was not pleasant and I honestly couldn't imagine a preemie with lung issues surviving that at home.

As stated before, the RSV injection is not an actual vaccine. If I were to have a preemie in my unit, I would agree to the shots once he/she was released.

[sleeveless]

Originally Posted by corrabelle 

My sister just had twins at 28 weeks on friday. Yesterday the nurses in the nicu gave her and her husband a brochure on rsv and the vaccine, and said that come autumn (rsv "season") they should vaccinate-"especially" because the babies are preemies.

Now, we're normally a fairly anti vaccine family all around. I suffered a major injury as a child an didn't vaccinate any of our children. My mom wished that she hadn't. (She honestly thought it was law-up until my injury, and didn't vax after that.)

Being so tiny and delicate, it's hard to know what is really medically necessary for these babies and what isn't. Of course the doctors are going to be telling her to do this-and she's having a really hard time deciding what to do.

Normally, she wouldn't vaccinate. (that was her plan.-these are their first children.) But she's terrified that they *will* catch rsv just by being in NICU. (Which, unfortunately is possible-and they will most likely still be in the nicu come october, when they were supposed to be "due".) They were on ventilators and are now on c-pap, so breathing is already a struggle.

Any words of advice, or articles out there regarding rsv vaccine and preemies? I've been searching but can't seem to find a lot other than people complaining that they have to pay for the rsv vaccine. Apparently it's not routine, so it's not discussed a lot. I honestly know nothing about it. 

We're in Canada, so we wouldn't have to pay, but that isn't the issue at hand.

A few years back, we dealt with this issue. A family member did a LOT of research at the library on Medline and other medical journals available only there. The bottom line was that there were (at that time) only two original studies on Palivizumab, or Synagis, both funded by the company that manufactures and makes billions of dollars from worldwide distribution of the vaccine. The number of babies in each study was alarmingly small (like 600 in one study, and 350 in the other). Neither of the studies corrected for hand washing or breastfeeding, both excellent ways of preventing RSV.

RSV is extremely serious in preemies, so it's important to think long and hard about whether or not to take Synagis. Our family member found an unpublished study that showed there were more fatal and serious adverse reactions to Synagis in children under age 2 than there were fatal and serious reactions in the next 50 drugs COMBINED given to children under age 2. Our family decided to decline the drug, despite pressure from the pediatrician. But the children in question were protected from contact with anyone sick for an entire year, and contacts with them were limited to immediate family. The babies did not get RSV, but not every family can be so careful or protective. The babies were not in daycare.

If your sister has time, she can read the studies herself and make a decision. If the babies are in daycare, it would probably make sense to get the vaccine, as they will be exposed to a lot of ill children during the winter. But if the babies are home and protected and breastfed, the choice may be less clear.  In the NICU, it's not cut and dried. Children get sick in the NICU despite all the disease prevention measures.
 

[CallMeMommy]

I had a preemie who got the Synagis shots, and he also had an allergic reaction to the 5th shot.  Luckily it was only a rash and not an anaphylactic reaction. 

Like the PP said, it's an immune globulin, not a vaccine.  That changes things.  If I had to do it over and had a micro-preemie, I'd for sure get the shots.  No question.  If I had a do-over with my 31-weeker I'm not sure what I'd pick, I could go either way.

Check the NICU forum, I know there have been several discussions on this topic, and I'm sure more will be starting since RSV season is coming up.