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Re: vaccine questions

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Hi all,

What have your mito docs said about vaccines and mito? I'm curious as we will not be able to see a "mito expert" until september and I realized, today, that Asher was never given the varicella (chicken pox) vaccine. He's had all the other necessary vaccines for children his age (he's 3), but we never did this one b/c of the neurological problems he was having at the time it is typically given. I know that the docs wanted to stay away from that vaccine (particularly that one b/c it's made from a "live" but altered virus - by the way, oral polio vaccine is as well, so we typically get the one that's a shot since that's from a killed virus). I'm scared that Asher will get the chicken pox from the vaccine as I understand that it is possible to get mild symptoms from the vaccine and that that will cause progression of the mito, but, then, what if he gets the full-blown chicken pox from someone?

These decisions are so hard! I never wanted these kind of decisions!!

I also contacted our immunologist b/c my older son and I both have a primary immune deficiency and he was against Asher having that vaccine simply b/c Ash will "shed" the virus for the next 6 weeks and that could make us susceptible. I would be okay b/c I get antibodies regularly, but my other son could end up with chicken pox.

Man, I hate these decisions. It seems a lot to ask us parents to try to figure this stuff out.

Any thoughts?

Anne R - mom to Ash (3 - mito, oxphos defect, complex III, and possible complex I)

and Sam (7 - primary immune deficiency)

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This is a tough battle, I've been through it. Ultimatly you and your doctor must choose what is right for your child. There are many on this group that have decided not to vaccinate, for many reasons. We decided for our daughter, Grace, that the risk of the vaccines was lesser than the risk of the illness. Grace does, however, does already have permanant liver damage due to her mito before she was diagnosed. With this any major illness, especially viral hepatitis, can cause her to go into failure.

We do take extra precautions when she has her shots. She is given a large dose of Motrin one hour before her shots, then follows with a normal dose every 4-6 hours after, for the next two days. The Motrin helps with any inflamation that can cause more damage to her liver, and help with fever to help with the mito.

So far she has had no major reactions to her shots. I think the only thing adverse is that she usually gets a really bad welt, that is painfull to her.

Best wishes, on this decision. I know it is a tough one. Remember, mommy knows best.

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