Guest guest Posted August 21, 1999 Report Share Posted August 21, 1999 Hi everyone; I just wanted to add my own experience to the " vaccine topic " ... Orion received his first hep b vaccination the day after he was born, and the second the day before a lot of his problems started... We have been told by his drs that they are investigating this vaccination in his case... They think that although the shot didn't cause his illness, there is a possibility that it could have increased the rate of his brain degeneration. As I'm sure some of you know, there have been cases where the hep b shot has caused severe neurological problems in patients... But no one warns you of them because they think " the benefits outweigh the risks " ... The " disease center " is currently investigating this possibility in Orion's case; they have reviewed his medical records and spoken with his drs. I'm sure we'll never know for certain, but I just wanted to pass this info along; it has been recommended that we do not allow our future children to have this vaccine, because of Orion's illness. Orion's Mommy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 1999 Report Share Posted August 21, 1999 Hi everyone; I just wanted to add my own experience to the " vaccine topic " ... Orion received his first hep b vaccination the day after he was born, and the second the day before a lot of his problems started... We have been told by his drs that they are investigating this vaccination in his case... They think that although the shot didn't cause his illness, there is a possibility that it could have increased the rate of his brain degeneration. As I'm sure some of you know, there have been cases where the hep b shot has caused severe neurological problems in patients... But no one warns you of them because they think " the benefits outweigh the risks " ... The " disease center " is currently investigating this possibility in Orion's case; they have reviewed his medical records and spoken with his drs. I'm sure we'll never know for certain, but I just wanted to pass this info along; it has been recommended that we do not allow our future children to have this vaccine, because of Orion's illness. Orion's Mommy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 1999 Report Share Posted August 21, 1999 Many of you may remember this comment from before, but for the newbies, I'll share it again. My two cents worth, here.... I think that the vaccination deal needs to be a very individual thing between you and a very close medical professional that knows you and your child, and your family's medical history *VERY WELL*. There is no black or white to this issue, no right or wrong. It is a very individual thing and a decision that you alone must make for your own family. There are many that will tell you of adverse reactions to the vaccines and there are just as many that will tell you of serious consequences to the actual diseases. You have to weigh the risk of both and make an individual decision that is best for your child. There is still so much that is not know about mitochondrial disease, but one of the things that is well documented is the risk of worsening and deterioration that comes with fever and illness. For some children with mito, this doesn't seem to be a serious concern, yet for others, there was major devastation related to the first febrile illness. In our experience, it has also been complicated by the fact that Caitlin is immune suppressed, and continues to receive treatments that either keep her immune suppressed or have the potential to do so. Yet the last time she got the flu, she nearly died. With previous illness, she has shown significant regression and taken many many weeks to stabilize. At this time, we take each vaccination on an individual basis and make a decision that is appropriate to her case, and that both I and the ped are comfortable with. it is a tough call, but you do the best you can and don't look back. Learn as much as you can and make informed decisions. Jeannine, mom to Dalton, Genny and Caitlin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 1999 Report Share Posted August 21, 1999 > I just wanted to add my own experience to the " vaccine topic " ... Orion > received his first Hep b vaccination the day after he was born, and the > second the day before a lot of his problems started... Hi , I bet you are aware of the current discussion on the Hep B vaccination and the current recommendations by the AAP and the CDC. Do you know if Orion had a Hepatitis B vaccine containing thimerosal?? I wonder if this had anything to do with his symptoms? have they ever said? Like you, I had my last three babies vaccinated in the newborn nursery and then 30 days later with the second dose as this was what pediatricians were doing at the time. Now the AAP says we should be waiting until 6 months to give this. CDC says anytime after 2 months for the first dose so they do differ. hopefully soon there will be enough quantities of the thimerosal free product that our babies can resume getting this in the nursery if not contraindicated such as in your future children's cases. The AAP guidelines (http://www.aap.org/new/hepbqa.htm) have not looked at the CDC site but I am sure they have info as well. And , I am belated saying this but thank you for sharing Orion with us. You write beautifully and your sharing is courageous. I think that in doing so, you will continue to bring meaning to his life as there is no end to the people that will be touched and learn from what you say. I imagine this really is small solace in the face of losing your precious child but know that your courage in sharing does make a difference to others. Like others have said , I am so thankful for the time that you, Joe, ('s POP), Lynne, the Marshalls, and others give to the community. Anne, mom to: Brittany, 12 Zachary, 7, G tube, J tube, CVL for TPN/lipids, adrenal insufficient Abby, 6 , , 27 months, G tube, J tube, CVL for TPN/lipids, GH deficient ***Mitochondrial encephalomyopathy, (complex 1 and 4 OxPhos defect)*** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 1999 Report Share Posted August 21, 1999 > I just wanted to add my own experience to the " vaccine topic " ... Orion > received his first Hep b vaccination the day after he was born, and the > second the day before a lot of his problems started... Hi , I bet you are aware of the current discussion on the Hep B vaccination and the current recommendations by the AAP and the CDC. Do you know if Orion had a Hepatitis B vaccine containing thimerosal?? I wonder if this had anything to do with his symptoms? have they ever said? Like you, I had my last three babies vaccinated in the newborn nursery and then 30 days later with the second dose as this was what pediatricians were doing at the time. Now the AAP says we should be waiting until 6 months to give this. CDC says anytime after 2 months for the first dose so they do differ. hopefully soon there will be enough quantities of the thimerosal free product that our babies can resume getting this in the nursery if not contraindicated such as in your future children's cases. The AAP guidelines (http://www.aap.org/new/hepbqa.htm) have not looked at the CDC site but I am sure they have info as well. And , I am belated saying this but thank you for sharing Orion with us. You write beautifully and your sharing is courageous. I think that in doing so, you will continue to bring meaning to his life as there is no end to the people that will be touched and learn from what you say. I imagine this really is small solace in the face of losing your precious child but know that your courage in sharing does make a difference to others. Like others have said , I am so thankful for the time that you, Joe, ('s POP), Lynne, the Marshalls, and others give to the community. Anne, mom to: Brittany, 12 Zachary, 7, G tube, J tube, CVL for TPN/lipids, adrenal insufficient Abby, 6 , , 27 months, G tube, J tube, CVL for TPN/lipids, GH deficient ***Mitochondrial encephalomyopathy, (complex 1 and 4 OxPhos defect)*** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 1999 Report Share Posted August 22, 1999 HI Ken, Thanks for your info and recommendations re: to vaccinate or not and about the chicken pox vaccine. It seems our autism DR. feels differently than our pediatrician. I need to talk to her before my daughter's appt. Because if I do vaccinate her, shouldn't I do /Bart at the same time? Wish I remembered where you worked. I have been home alot this summer (South NJ) due to the cancer returning in my mother. Kathy ---------- > > To: KAFOLEY@... > Cc: Mitoonelist > Subject: vaccines > Date: Saturday, August 21, 1999 8:35 AM > > > > Hi Kathy, > > Wish there was an easy answer for you. Here are some explanations though. > > There was a measles epidemic back in 89-91 which is why everyone gets 2 > MMR's. Chickenpox (Varivax) and MMR are both " live " virus vaccines. there is > a 7% chance of getting chickenpox even with the vaccine, but you won't get > 800 lesions by the second day like my eldest did. The vaccine is NOT > NEW. We've been using it in this country for nearly 21 years. The history of > the vaccine is similar to Measles (had the outbreak 28 yrs after starting > immunization). Though we don't know how long the immunity will last for (I > think everyone will end up with a second dose, and between Japan and > ourselves - they started 25 yrs ago with the same strain - we should know > the answer within the next 2-5 yrs), there is one very good reason to get > the shot. Before I get to the reason, though, the people that we started > using the vaccine on were cancer kids. With them the disease may be fatal > and accounts for about 100 deaths a year. There are some " normal " people > that end up with debilitating permanent neurological complications too. But > the real reason to get the shot is that there are about 10,000 admissions to > the hospital each year with significant strep infections complicating the > disease - similar to the " flesh-eating " bacteria that people hear about > every once in a while. Consider that plus the fact that many bacteria are > getting to be resistant (drugs don't work anymore). Personally, I almost > insist that if a child hasn't had chickenpox by the age of 10, then they > should get the vaccine. However, I can't force anyone to get the vaccine. > Currently in the state of NJ, a parent must sign that getting a vaccine is > against one's religious belief or I must sign a statement stating that it > would be a significant detriment to a child's health. Given that I've always > immunized Rhys (anything he gets side-effect wise from any vaccine would > certainly be less serious than the complications of the disease itself), I > don't see how I could definitely say that a vaccine would cause serious > complications for my patient population. Some docs (I'm not one) will > absolutely refuse to care for a child anymore if the parents elect not to > vaccinate. > > This whole subject tends to be a very " heated " one, and personally, I think > that many of those people with serious side-effects are probably the > undiagnosed mito people and ANY insult can cause side-effects that may make > mito worse (just depends if temporary or permanent, and no one knows). > > I expect that this may spur some " interesting " discussions on the list, and > the topic for all the " newbies " , usually comes up once a year, and usually > in August, just before Kindergarten starts. So welcome to the 3rd annual > vaccine topic (hopefully no flames). > > Ken > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
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