RhoGAM? - Page 2

[stik]

Bluedaisy, I'm sorry for everyone's loss that has one. However, the plural of anecdote is not data, and a mother's belief is not the same as a scientifically supported conclusion.

Also, though I'm having trouble looking it up, I really don't think the total number of deaths caused by hemolytic disease in the US in the past few years is 2. That's the number on Japonica's other message board. Given the preventability of the condition, I think it's likely most common among women who have little or no access to prenatal care. This population is also not likely to have easy access to internet message boards.

I have now heard of ONE incident in which Rhogam transmitted a blood borne pathogen, and I haven't yet seen a citation to back it up. I'm reserving judgment until I do. In any case, there has CERTAINLY never been a case of CJD being transmitted by the shot. If you eat beef, you take on a risk of CJD that is infinitely greater than the demonstrated risk of the Rhogam shot.

There are IgE antibodies in Rhogam - that's what the shot is for. The idea behind the shot is that a limited dose will deal with the RH+ blood cells that enter the mother's body without triggering a natural reaction which would create a practically unlimited supply of antibodies. The limited numbers are supposed to limit the reaction.

Where are you finding that RH- women are disproportionately represented among mothers of autistic children? And what makes you think that correlation MUST be a result of the rhogam shot and not of some other factor that may be more common in RH- women?

I opted out of the 28 week shot because I opt out of any medication I think is likely unnecessary, whether I think it's harmless or not. But in cases of known or suspected bleeding, I think it's a good choice. And I think suggesting that the shot is uber-risky and will cause autism and CJD and stillbirth is, to be frank, a hysterical mis-representation of the facts.

[littlecindy]

does anyone know if measuring small low birth weight could have anything to do with getting the shot at 28 weeks?

[gini1313]

Well, this is entirely anecdotal, but I had the shot with both my kids at 28 weeks and they were both over 9 lbs...

And, just FYI, there is a blood test they can do after birth to look for blood mixing. I don't know if it entirely eliminates the "need" for the postpartum shot or not, but they tested me after my uncomplicated, natural, intervention-free hospital birth (because my doctor is very thorough) and I had fetal blood mixing. They did another test that told them how much rhogam I needed (and I wound up needing 3 shots) to prevent sensitization and then tested 6 weeks later to be sure I had not become sensitized.

I do not know, but I would conjecture that if the test showed no blood mixing that the shot would be unnecessary? Maybe those who are concerned about the 28 week shot could request that test to see if there was any blood mixing?

Also, for those of you who do not get the 28 week shot due to risk of the fetus, are there not risks of taking a drug while breastfeeding?

[bluedaisy]

I never said the shot was uber-risky, I said in my posts that the risks of getting the shot are very small, i was just trying to emphasize that it's not risk free.

my midwives couldnt understand why i didnt want it because in their mind it was risk free. but no medicine is completely risk free.

you asked me what the risks were, those were the possible risks I found in my research. i would prefer scientific data too but my point is there is NONE - they havent done any safety studies,

my info on rhogam and autism actually came from an old issue of MOthering - my doula has back issues from the 80s and 90s that i borrowed.

i printed out all my research in a folder but i gavve it to a pregnant friend who is also rh negative so i cant tell you the date of the issue.

[Peppermint]

I am on my 5th pregnancy, I had the 28 week Rhogam with the first 4, and only needed the shot after birth once, the other 3 babies were all rh- like me.

This time I finally decided (after tons of research over years) that I would not have the 28 week shot, and would only have one during pregnancy if there was an accident or bleeding issue in that last (for me) 11 weeks of pregnancy. I will still use the shot after birth if this baby is positive, as I feel that is a "risk" well worth taking, unlike the 28 week shot.

AFAIK, the numbers of sensitization when using the 28 week shot and the after-birth shot are .8%, whereas without the 28 week shot, it is 1.8%, I am comfortable with that difference. My OB simply said "I kind of figured you would deny the 28 week Rhogam this time" and that was that. No argument at all, he knows I have done my research, and we talked last time about the fact that it is a human blood product and that they can only test for things we know about now, and it has preservatives, etc.

I really do feel like Rhogam is all around a positive medical advancement, it is just that (IMNSHO) we have taken it too far with the routine 28 week shot.

[dinahx]

I don't understand why no one is taking Japonica's loss and her theorey about why it happened seriously! It is upsetting me a great deal. Of course unknown viruses could be transmitted!

Additionally, until very recently, mother's were dosing their unborn with Thimerisol to achieve a very small reduction in risk by getting the 28 week shot. Clearly the greatest reduction in risk comes from the shot after delivery of a positive baby.

I have had Rhogham many times, I think 5 in total, 2 in my pregnancy with my son. However, I can awknowledge there are RISKS, and I also tend to believe that a mother's analysis of why her baby died is typically right.

[dinahx]

Additionally, mercury and neurological disorders being linked is hardly 'hysterical'! Google 'minamata disease'. Also, I consider eating beef to be safer than taking an injection of a blood product. Injection is not injestion, the liver and kidneys are excellent at filtering. Women being given mercury in pregnancy is a calamity, a travesty, a crime, really. Although of course they could also have gotten it from the Flu shot, Tuna Fish, or living near a coal plant.

The package insert of Rhogham lists the theoretical risk of CJD, FTR. Also, how would you know if it has been transmitted? CJD takes years to show up. Again, I've gotten Rhogham a lot in my life, but I can awknowledge that there are risks and that some risks may be not clearly understood and under-reported.

[stik]

There is no mercury in Rhogam at this point. I checked the manufacturer's website. I absolutely agree that mercury is a dangerous neurotoxin, and while I'm skeptical about it causing autism, I don't think people should be injected with it. But there isn't any in Rhogam.

No one has yet produced a citation that says Rhogam causes Autism - all we have here is a vague memory of one in a magazine that, while respected in this forum, is hardly a scientific journal (and doesn't claim to be - it's a natural parenting magazine). The same mag has published claims that HIV does not cause AIDS, that estrogens in soy mess with children's hormones, and that marijuana is safe in pregnancy. I enjoy reading, but I take Mothering's scientific claims with a huge grain of salt.

The day we figure out what causes autism will be a great day. IF RH- mothers are indeed disproportionately represented among mothers of autistic children, that may be an interesting clue. But even *if* that is the case, it doesn't necessarily implicate Rhogam. It could point to a gene that's more likely to be associated with RH- blood, or to a gene that is more easily expressed in the absence of RH factor, or to problems caused by as-yet-unknown complications of RH incompatibility. We would need to know so much more than just numbers of RH- moms of autistic children to work it out.

It feels disrespectful to me to argue about the cause of another mother's loss, which is why I've avoided it. Suffice it to say, I think a mother's instincts about the causes of her child's death are *sometimes* right. It would take a lot of investigation before I felt comfortable agreeing with anyone's statement on the cause of any death.

Every human blood product carries a theoretical risk of CJD (and I suspect their package inserts all note this risk). So does every slice of meat. So does the blood used in IUTs given to fetuses with hemolytic disease. According to the manufacturer's website, the plasma used in Rhogam comes from a select group of carefully screened donors, and is itself screened, filtered, and processed to prevent virus transmission. NO ONE has ever gotten CJD from Rhogam. The risk is a theoretical possibility.

On the other hand, while CJD continues to be a rare disease, most of its victims have gotten it from eating meat.

Untreated, HDN kills 25% of babies of sensitized moms, and causes serious problems in another 25%. This is an infant mortality rate 10 times higher than the US national average of 6.9/thousand for RH+ children of moms who are RH sensitized. That's higher than the risk of autism (currently estimated at 1 in 150.) It's higher than the risk of ever getting CJD from any source.

I think it makes sense to question the necessity of a 28-week shot for all RH- moms. I think it makes sense to ask what measures are being used to keep a human blood product safe, and what methods are being used to assess the effectiveness of those measures.

I get angry when I see treatments that save a lot of lives presented as if they are frightening and dangerous things, especially when that depiction is based on misrepresenting the treatment. Rhogam doesn't contain mercury. No one has ever gotten CJD from it.

Claims about CJD and stillbirth and mercury encourage people to make decisions based on fear of the imaginary rather than on logical consideration of the actual risks and benefits. That's why I called them a hysterical misrepresentation of the facts. Because if you're RH-, and your partner is RH+, and you're 30 weeks pregnant and you've been in a car accident, the world wide web should not be telling you that Rhogam is likely to cause autism, CJD, or death, when in fact it's most likely to prevent serious complications in future pregnancies.

Sometimes, I think we get so tangled up in considering every conceivable risk, no matter how miniscule or theoretical, that we allow ourselves to set aside the real and tangible benefits.

[dinahx]

Rhogam DID contain mercury, which points to serious accountability problems that permeate pharmaceutical medicine. No one asserted that RHOGHAM has anything to do with Autism, but it is a totally plausible and yet to be disproven belief that Mercury has a LOT to do with Autism.

It can't have been disproven, to date, FTR, because there is no accepted way to test for it (trust me, due to a dental exposure I am bending over backwards to get myself tested it for it now and not having much luck), and there has never ever ever been a comprehensive screening of the blood levels of children en masse similar to what we have for Lead. No large scale quantitative analysis of the levels in children = no ability to disprove the link. I know my son has not been screened and IMO there is no point to a hair test from a scientific POV: doctors won't accept that as valid data.

I do suggest you look into Minnamata, it is so close to Autism it is very striking. This thread is not about Autism & mercury, however I believe it is related when you ask 'WHY did Rhogham ever contain this? WHY was a known neurotoxin injected into Pregnant women?'. I am 90% sure it no longer contains this, however did you know the package insert can say 'no mercury' when in fact some trace amount remains from the manufacturing process? We are only like 5-7 years from when the Mercury was removed, I think we should honor our foresisters by remembering what they went through.

Knowledge is power. Full knowledge. Informed consent. The whole idea that women can't handle a full grasp of the applicable facts is very Victorian, IMO and very much the whole 'little lady' mentality. Of COURSE I would get Rhogham if I was in a Car Accident. But that wouldn't make the risks disappear at all. And it wouldn't erase the spotty history, the historical accountability problems, etc.

[dinahx]

It is a giant leap, also to go from refusing the 28 week shot, to refusing all shots, to not even treating sensitization. A really huge leap. It does not follow that because a low risk woman refuses the 28 week shot that she will even be sensitized, nevermind that she will ignore this sensitization in a future pregnancy. Indeed it would not be possible to receive legal prenatal care in the US and not have sensitization a) detected and b) treated.

[stik]

Originally Posted by dinahx

I think we should honor our foresisters by remembering what they went through.

Are you suggesting that women should decline Rhogam now because it *was at one time* manufactured with mercury? Is it honoring our foresisters to pretend we face the same risks that they did? Because honestly, I prefer honor our foresisters by acknowledging that once upon a time, many, many women had one healthy baby followed by a string of dying and stillborn babies, and I am lucky to live in a place where the condition that caused that is so easily treatable.

I see that you are deeply convinced of an autism/Rhogam link. There is no way I am going to change your mind here, any more than you will change mine. I will note, for the record, that there is more mercury in an average serving of tuna than in the Rhogam shot. During my last pregnancy, I was informed that it was safe for pregnant women to have up to two servings of tuna a week.

I believe that women can handle the full facts. Here are the full facts about CJD and Rhogam:

Every human blood product carries some risk of giving you CJD. However, in years and year of use, no one has ever gotten CJD from Rhogam, which is manufactured from the plasma of a limited and exceedingly well-monitored donor pool living near Buffalo, New York. Other human blood products, including donor blood used to transfuse babies with hemolytic disease, are nowhere near as carefully monitored, and are unfiltered whole blood products that are much riskier than the carefully selected, monitored and filtered plasma used to make Rhogam. The highest risk of CJD transmission comes from beef, which is packaged and sold without a cautionary insert.

[stik]

Originally Posted by dinahx

Indeed it would not be possible to receive legal prenatal care in the US and not have sensitization a) detected and b) treated.

Of course it's possible. Your HCP could be incompetent. You could decline the testing that would detect sensitization. You could lie or be misinformed about your partner's blood type or about your previous child's. Your records could be confused with another patient's. You could stop coming to prenatal visits and be lost to follow-up.

And, sadly, more women than I like to think about don't have any access to medical care except under EMTALA.

[dinahx]

During my last pregnancy, I was informed that it was safe for pregnant women to have up to two servings of tuna a week.

You were misinformed. Tuna is unsafe for pregnant women. Also, you do seem to insist on believing that our liver and kidneys are worth nothing in protecting us from disease and pollution, nor is the process of digestion worth anything? Injestion is very different from injection. I mainatain that you cannot know whether CJD has ever been transmitted by Rhogham, simply because it won't have manifested yet, and it is not routinely tested for in neonates or children.

'Less mercury than in the average can of tuna' is what was yelled at me by a dentist just before he bullied me into having 2 large amalgum fillings removed while I was nursing. I conceived a child 2 weeks later and that baby died at 10 weeks, I probably don't know what caused my m/c either right?

It is the rallying cry of mercury apologists in the media, it is extremely relativistic, and I am not buying it. I FTR would never ever eat Tuna, let alone while pregnant, and go out of my way to spend over $4 can on Wild Alaskan Salmon.

Saying it is 'okay' that Rhogham contained Thimerisol and was injected into pregnant women to achieve a very small reduction in risk so long as it isn't 'proven' to have 'caused' autism is equivalent to saying that it would be okay if Insulin turned up containing Cocaine or some other dastardly contaminant, so long as no one was documented to have died, because hey Diabetes is serious. :?

FTR I subscribe to a 'critical mass' theorey of Mercury toxicity, and we can say without hesitation that children born to mothers who received Rhogham at 28 weeks just 10 years ago had a measurably higher level of Hg at birth than children born to mothers who neither received Rhogham nor the the Prenatal Flu Shot. If anyone had bothered to measure it, which they didn't.

And also FTR, a lot of us reduce our risk of CJD from beef by only consuming grassfed beef, if we consume beef at all. I would say in the life of the average person diagnosed with CJD it would extremely difficult to determine the exact cause of the disease, precisely because it takes so long to manifest.

Just because Rhogham treats a real condition doesn't and never did give it a free pass to dose mothers with a neurotoxin, and I don't believe that accountablity has changed that much so mothers should not be cautious.

Also, maternal willingness to get Rhogham doesn't in and of itself prevent the possibility of sensitization. Every SINGLE time I have gotten Rhogham I have had to remind my HCPs and sometimes I have had to fight for it to be given in a timely fashion. If you read through Rhogham threads on here, you will see plenty of innapropriate dosing, which is risk minus benefit.

I would say this is still a very valid topic for discussion because many HCPs do not investigate whether or not the father is positive before dosing every negative woman. Or they assume she could literally be pregnant by anyone, despite her assurances to the contrary. IMO appropriate dosing of Rhogham is poorly understood at best by your average HCP on the street. Since it is a somewhat risky blood product, increased understanding is very important.

[Peppermint]

Originally Posted by dinahx

It is a giant leap, also to go from refusing the 28 week shot, to refusing all shots, to not even treating sensitization. A really huge leap. It does not follow that because a low risk woman refuses the 28 week shot that she will even be sensitized, nevermind that she will ignore this sensitization in a future pregnancy.

Absolutely, I honestly am having trouble seeing the huge argument on this thread. I must have missed the people who claimed that one should *never* use Rhogam. I think almost everyone who even questions it, is simply questioning the routine 28 week shot. I didn't see anyone say "don't bother with it if you have an accident or bleed, don't bother with it if your baby tests positive after birth, etc"

FWIW- I had Rhogam with thimerosol during my first pregnancy and I am angry with myself for that, and my care providers, and the manufacturers. (and, that baby was negative like me, so- there really was no reason)

[mom-to-jj]

At what point after birth is a baby's blood tested? I'm wondering how I will know if I should decline the shot after the birth. I felt like after DS was born, the doctor and nurses told me nothing about what was happening either to him or to me. I have no idea at what point I was given the second Rhogam shot, and I have no idea what my son's blood type is.

Is it incumbent upon the mother to ask that the baby's blood type be compared to her own before the shot is administered? Why don't they just do that automatically?

[japonica]

Absolutely, I honestly am having trouble seeing the huge argument on this thread. I must have missed the people who claimed that one should *never* use Rhogam. I think almost everyone who even questions it, is simply questioning the routine 28 week shot. I didn't see anyone say "don't bother with it if you have an accident or bleed, don't bother with it if your baby tests positive after birth, etc"

Exactly. I don't think I saw anyone here so far strictly saying that Rh neg pg moms-to-be must forego all rhogam shots. I think the discussion has centered around some of the unknowns and possible negatives of the product and what some of the options are (no prenatal shot, shot at delivery after blood testing, kleihauer-betke test). Even a pregnancy with an Rh positive father might result in a Rh negative baby, if the father is heterozygous for that particular antigen.

I never said the shot was uber-risky, I said in my posts that the risks of getting the shot are very small, i was just trying to emphasize that it's not risk free.

my midwives couldnt understand why i didnt want it because in their mind it was risk free. but no medicine is completely risk free.

It would also be worthwhile to remind midwives and OBs that not only might there be risks involved, but with the reported 1% failure rate, someone is going to get sensitized, even when everything is done correctly. I found it frustrating that OBs assume that 99%=works every time, so when you have a group of women who find themselves sensitized, it's a shock because OBs sell it as foolproof. It would be better to tell patients right off the bat, "there is the small chance that this will not work," so that if isoimminuzation does occur, the patient was told in advance, not "hey, how did this happen?"

don't understand why no one is taking Japonica's loss and her theorey about why it happened seriously! It is upsetting me a great deal. Of course unknown viruses could be transmitted!

It is not my intention to panic or upset others, but I am just relating my experiences with this product. After a full term stillbirth, believe me, we get screened and tested for everything under the sun. And we get genetic testing, karyotypes done etc. That said, the screening is for known infectious agents, so anything unknown would not be on their radar, so to speak. And we had a full autopsy and pathology of the placenta done. What started me wondering was the pathology report of the placenta showing that *something* caused an immune reaction which led to a massive inflammation that gradually choked off all blood flow. Then the autopsy documented the IUGR rates and coincidentally it started right after my last winrho shot. So, there's is no definitive answer, just a lot of coincidences that seem to point in a certain direction. And I had two successful pregnancies since then (even sensitized) so there was no inherent immune issues or clotting issues with me. And I did not have any additional winrho shots since then either (no point since I was already sensitized, although the nurses at the OB practice kept insisting I needed them). My instinct is that the winrho did have some part to play in my first child's death. But I don't have the "proof" for it and whatever people want to do with that opinion is up to them. I read hundreds of stories of parents whose children have suffered permanent disability or life-altering reactions to vaccines and I don't discount them as just anecdote nor do I take them as scientific fact. I incorporate their experiences in with all the other information I read about a product from a multitude of sources and go from there.

[littlecindy]

i got the 28 week shot without question. and then my son turned out to be a negative blood type anyway. so i figure my next child is at a lesser risk, because there's no way i could be sensitived already, right?

so i am trying to figure out what to do when i'm pregnant next time. i hate to get any shot without looking at whether it's really needed for me and my situation. i measured small with my son at 36 weeks. i was right on track, he was even a bit big until my 36 week appt. but a lot of things happened from 28 weeks to 36 weeks besides the rhogam (my sister almost died, and my son turned head down which i'm guessing was the biggest factor).

[SallyN]

I'm just going to chime in for those concerned about RhoGam being a blood-derived product... some places now use the patient's own blood. (You get a blood draw, lab does it's *thing* and the next day you go back for the injection.)

[dinahx]

That is SO interesting, please tell us more! <3

[sarabecca]

I know next to nothing about this topic, but I recently read about something that might be interesting to some of you. Here's the link:

Biocept, an emerging leader in biotechnology, will launch I.D. Rh(D), the first in a series of noninvasive prenatal diagnostic tests that can be performed with a simple maternal blood sample, at the Annual Clinical Meeting of the American College of Obstetricians and Gynecologists, May 3-7 in New Orleans.

The I.D.Rh(D) test diagnoses the Rh(D) status of a fetus in an Rh(D)
negative pregnancy, and can be performed as early as ten weeks of gestation. The test isolates fetal DNA circulating in the mother's whole blood...

Read the whole thing here: http://www.reuters.com/article/press...08+PRN20080505