Did someone say Hep B?
Well, everyone reading your initial post probably thought to themselves... Uh oh... this is going to set Wendy off on a tirade!
LOOOOOOONG story short- Yes, I do think that your Hep B vaccine was probably connected to the onset of your disease. I also believe that it was the trigger for my son's disease nearly 9 years ago. There are probably 20-30 others that I have met through the AAMDS listserv and also in person at AAMDS Patient and Family conferences over the years that have suspected the Hep B vaccine played a role in their disease.
I have disussed this with every hematologist I've ever met or that has treated my son and the answer is always the same... Yes it's possible/probable but difficult to prove. I can begin my rant here but will try to make it brief since most of you have heard it before.
I am very bitter that this vaccine is "required" for all newborns (1st dose administered now prior to them leaving the hospital at birth). My son got it when he was 6- it was "new" and our school district "required" it. I rushed out to comply with the rules, being very DUMB and trusting that this would be the best thing for my child.
The recommendation that I want to give to all parents/adults is to ASK WHY this vaccine (or any vaccine for that matter) is needed.
I am sick that I rushed out to vaccinate my children against a disease that they had ZERO chance of getting and exposed them to potential side effects like life threatening marrow diseases. Hep B is sexually transmitted. The people at risk are illegal IV drug users, prostitutes, or others that are sexually active. Not my second grader or newborn babies born to mothers who do not have Hep B. The "at risk" population is not one likely to come in and be vaccinated, so the powers that be decided to just vaccinate everyone else. This is known as "herd immunity".
I know some people are at risk- those who work in public service/health care, sexually active not in a monogamous relationship, etc. but my kids were not at risk. period.
It was a real education when I first began looking into this. I think something like 43 of the 50 states allow you to opt out of vaccines of any kind for various reasons- religious, medical and philosophical. A school cannot deny your child's admission for lack of vaccines. I would guess that most people are not aware of this and think that they MUST in order for their child to attend school.
Don't get me wrong, I am not anti vaccine. However, the risks vs benefit must be weighed individually for EACH person AND EACH vaccine. Buyer beware- especially the new vaccines.
Consider this: the Oral Polio Vaccine (OPV) was given for.... what, nearly 50 years? (remember the sugar cube? the little drops in your babies mouth?) Did everyone know that they don't give that one any more? Why? Well, after all these years, the CDC decided that too many people were actually GETTING POLIO from the vaccine. It was a live virus. So, now, babies once again are getting the original Salk killed virus vaccine which is injected. Great- it only tood 50 years of bad side effects! Wow!
Second example: Rotashield vaccine for infant diarrhea. Taken off the market after only one year and a million doses given due to a serious side effect of bowel intussusception and death. Six years later they bring out a new one (RotaTeq) and within months, it is also being questioned. Not saying that infant diarrhea is not a very serious issue, but lining up for a new vaccine is no longer my idea of "peace of mind".
I'm so glad I don't have a daughter and be put in the position to make the decision about whether to give her the new HPV "Gardasil" vaccine.
I think I've already shared about the decision we made about our older son who was a freshman in college last year. The new meningitis vaccine is recommended for "freshmen in college living in dorms". Well, that fit his description perfectly. However, I did a little investigating and am so glad that I did. He is attending college in Oregon, the only state where, unlike the rest of the country, 66% of the cases of meningitis are type B, which is not covered by the vaccine. Therefore, the risks do not outweigh the benefit of getting the vaccine. We were able to make an EDUCATED choice about this vaccine. DO YOUR HOMEWORK.
Ahhhhhh..... off my soapbox.
Anyhow, FYI, my son went 7 years without transfusions. Although he is now transfusion dependent on platelets and rbcs, his quality of life is good.
I caution you about getting other vaccines now that your body is already compromised. Good luck to you
Thanks for listening.
Wendy/mom to Grant
dx 12/4/98 AA
List of what we've tried over the years:
ATG rabbit
ATG horse
cyclosporine
mycophenolate
danazol
zenapax (daclizumab)
prograf (tacrolimus)
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