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MAJOR DILEMMA!!!!

Posted by on Apr. 23, 2011 at 6:38 PM
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Okay, I've been commmitted to not vaccinating since my first child was born 4 years ago. We now have 3 children. None are vaccinated.

My 2nd has had mysterious problems since she was born. After pushing for answers for more than 2 1/2 years we finally have a diagnosis. She has a metabolic disorder, PDCD, which is realted to the mitochondrial function. Her body is unable to effectively metabolize carbohydrates effectively and as a result she is at risk for lactic acidosis, which can cause systems to shut down. Anytime she gets sick, even with minor illnesses, she is at risk for death. Most children with this disorder do not survive childhood.

So of course, that brings into question the risk assessment of not vaccinating. It's never been a concern before, most of these illnesses, especially the more common ones, are not deadly. But now, for her, they have a very high chance of killing her or permanently debilitating her.

So far she is doing very well. For a child who presented so young, she's doing shockingly well. She crawls, explores, she's very vocal (though non-verbal) and she's learning to walk. We started on a ketogenic diet and she's doing even better. Her providers who care for her say she's doing better than any child they've seen with this disease. It's fairly rare, only a few hundred worldwide have it.

I believe that she is doing so well because we exclusively breastfed her so long. She's 2 1/2 and just weaned herself. And I still pump 4-10 ounces a day to give her in her feeding tube. I also think she has done so well because I gave her immune system the chance to develop properly.

But faced with the very real possibility that I may lose her if she gets pertussis or measles. Combined with the fact that we live in hawaii, which sees a lot of international visitors. And she starts preschool this fall. Well, I'm really not sure what the right thing to do is. The risk-benefit analysis has changed drastically. My inclination is still to not vaccinate, because a vaccine reaction (and her doctors confirmed this), could have just as serious results as getting the disease. The fact that the doctors said this before I even mentioned anything tells me how high the risk is.

But children with PDCD whon do contract one of these illnesses do NOT do well, and that I know. So I can't dismiss the risk.

So I just wanted to hear some input and advice from some like minded people. I know it's hard to say "I would do x" without really knowing. Because I always thought I would know what I would do in this position...until I was in it. But I'm interested in hearing input from people whose knee jerk reaction isn't "vaccinate, you dummy!"

So please tell me what you think you would do, and why. And whether or not you delay, selectively, or don't vaccinate at all. Thank you!
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by on Apr. 23, 2011 at 6:38 PM
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Replies (1-9):
Pishyah
by Bronze Member on Apr. 23, 2011 at 7:57 PM

How awful.  I'm so sorry! :' (

I believe I would still stick to not vaccinating.  Like you said, it is hard to know but I do believe that I would flip flop and then settle with not vaccinating.  I'd probably reconsider it a lot but ou don't know what would happen either way.  Nothing is guaranteed and there's a high risk of either option being the one that causes her to get sick.  She's going to get sick, though.  There's no way around it.  You know many in the group believe that vaccines don't work as well as they're bad for us.  I do believe that they don't work and if I'd be able to REMEMBER that while upset and making this decision, I'd stick to my guns.  Breastmilk, tons of vitamin D for her and me, vitamin A, vitamin C, zinc, and try to eat a mostly raw diet.  I'm so sorry you're faced with this! 

Caroline2010
by Bronze Member on Apr. 23, 2011 at 10:05 PM

wow thats really hard! im so sorry! i would like to think i would stick to non vaxing! its one of those damned if u do damned if u dont things! if u do vax she could still get sick and could die from a reaction, but if not she could get sick and still die! idk! im so sorry u r faced with this! i believe the vaxs dont work and r usless, and fear of a reaction, and the things in the vax i dont agree with keep me from not vaxing! i will keep ur family in my toughts! *hugs*

Lukes-Mom
by Member on Apr. 24, 2011 at 7:56 AM

My heart goes out to you.  I am so sorry you have to go through this.

The first thing I am hearing is that your gut is telling you NOT to vaccinate.  You should listen to that.  As I was reading my gut was saying no as well.

Here's the thing, not only do we all seem to agree that vaccines don't work, but I have read numerous reports that vaccinated children that get the diseases anyway get a much worse version than a child that has not been vaccinated.  In addition the vaccine could actually give her the disease itself.

Also, the new studies show that it is a mitochondrial disorder that predisposes to autism.  I believe that is set off by vaccines.  If she has a mitochondrial disorder then how is she going to process vaccines?  That sounds like a recipe for disaster.

I would be more inclined to never vaccinate and possibly consider homeschooling to prevent exposing her to sickly children at preschool and schoool. 

I definitely agree that she needs very high supplementation with vitamin D.  And of course other nutrients.  Dr. Mercola recommends that people fighting immune disorders have a blood level of vitamin D as high as 90 or even 100.  Conventional doctors might not agree with that but the information is out there.  Check the vitamin D council.  I would definitely get her level tested and supplement with a vit d3 (cholecalciferol).  YOu can get it in liquid form and put it in her milk.  I get mine from NaturalStore.com.

Have you considered finding a Naturopathic Doctor or the like to help you?

God bless you and your little girl.  I hope you come to peace with your decision and enjoy every day with her.

Char07
by Member on Apr. 24, 2011 at 11:25 AM

Do you plan to homeschool?  Do you use daycare at all?  I think the pp had some really good points about staying away from schools being a great idea.  I think if I were you I would continue to not vaccinate.  In my mind if she gets worse or has a bad reaction from one of vaccines I would feel I caused it because you know going into it that theres a good chance she will have a serious reaction.  I would rather take the chance of her getting sick (her getting sick is probably less likely than a serious reaction from the vaccine right?) and take all precautions to keep her away from sick people.  I would keep pumping for her and trying to get her bm for as long as humanly possible.  You mention pertussis- and we all know that most cases popping up are in the vaccinated population anyways, so then you are running the risk of a serious vaccine reaction and then later on contracting pertussis anyways.  I started out vaccinating completely, but due to my intuition, research and some possible vaccine reactions in my dd's we now do not vaccinate at all.  I am so sorry that you are in the position you are, I can only imagine how you must feel trying to make decisions like these and I hope you find peace in whatever decision you do make.  I agree you always feel like you know ahead of time what you "would" do but when faced with feeling like your damned if you do and damned if you don't it so much harder.  Your dd and your family are always in our prayers :)

MamaCass
by Bronze Member on Apr. 24, 2011 at 11:28 AM

it is my understanding of this disease that even a "minor" cold can be lethal to these children.  SO that means even if you do vaccinate, you cannot vaccinate against everything.  Does she have to start pre school?  Can you stay home with her or homeschool?  I only as because I know she is at such a high risk and I know what kinds of germs children bring to school.

With regard to vaccinating her I cannot give you a recommendation for that.  It is a very personal decision and one you need to make on your own to be comfortable with.

I would say that if you do decide to vaccinate her, only do so selectively, only do one every 6 months, and dose her with high doses of vitamin C (as long as that is not contraindicated with her condition) and glutethione.  Vit C is an extracellular antioxidant and glutethione is an intracellular antioxidant.  Studies have shown that when the body is exposed to a toxin of any kind that the cells "eat up" both of these vital nutrients for repair.

My heart tells me that you are doing something right with not vaccinating so far.  I don't think it is coinscidence that she is the healthiest child with this disorder that the doctors have seen.  Follow that mommy instinct...it has always served me well.

lifetimelove
by Member on Apr. 25, 2011 at 10:36 PM
Thank you all for your input. My gut really is telling not to vaccinate. I need to really get the info from Dr. Tennpenny and really look into the efficacy of the vaccinations. Because obviously it makes the arguement a nil if they don't work anyways. My dh trusts me to make the right decision, but I want him to feeel as confident as I do about it being the right choice. He thinks that it's good to delay them, and believes there are risks to them, but he also believes there are benefits as well, just not for babies. He's as concerned about reactions as well, so that's something. He's definately not wanting her vaccinated, but I think he's still on the fence about our "healthy" kids once they hit school.

As for school, I'm a little on the fence. With her involvement, there are so many more resources availabke for her with school. It'll be easier for her to get therapy, to get the augmentative communication stuff she needs. My mom did special education for 30 years, including running the program for the county.

I don't want her to live in a bubble. She loves being around other children, and she makes the most progress when she is around other kids. I am confident about my ability to homeschool my other children and meet their needs, but I don't know if I could with her. I have a friend who is a mother of 10, the 5th has a mito disorder and goes to school. She homeschools the other nine.

It's hard. A lot of my concern is about balancing her quality of life with her health concerns. Balancing her needs and the needs of the entire family. It's never cut and dry, for ANY decision we make. I suppose that's life though, right?

Thanks for your input, it did help. And feel free to keep it coming. I'm not a person who offends or gets upset by tough love. =)
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rabbit4
by Member on Apr. 26, 2011 at 9:50 AM

i generally think that a child that can't handle an illness can't handle a vaccine either. 

clasater
by Member on Apr. 26, 2011 at 9:59 AM
I agree with this mama and I would just like to say that I am so sorry that you have to go through this I can't even imagine how hard it must be to be faced with these decisions which seem so unimportant to a lot of
parents but have the potential to change your life forever. I'll keep you in my prayers as you make these difficult decisions for your lo!


Quoting Lukes-Mom:

My heart goes out to you.  I am so sorry you have to go through this.

The first thing I am hearing is that your gut is telling you NOT to vaccinate.  You should listen to that.  As I was reading my gut was saying no as well.

Here's the thing, not only do we all seem to agree that vaccines don't work, but I have read numerous reports that vaccinated children that get the diseases anyway get a much worse version than a child that has not been vaccinated.  In addition the vaccine could actually give her the disease itself.

Also, the new studies show that it is a mitochondrial disorder that predisposes to autism.  I believe that is set off by vaccines.  If she has a mitochondrial disorder then how is she going to process vaccines?  That sounds like a recipe for disaster.

I would be more inclined to never vaccinate and possibly consider homeschooling to prevent exposing her to sickly children at preschool and schoool. 

I definitely agree that she needs very high supplementation with vitamin D.  And of course other nutrients.  Dr. Mercola recommends that people fighting immune disorders have a blood level of vitamin D as high as 90 or even 100.  Conventional doctors might not agree with that but the information is out there.  Check the vitamin D council.  I would definitely get her level tested and supplement with a vit d3 (cholecalciferol).  YOu can get it in liquid form and put it in her milk.  I get mine from NaturalStore.com.

Have you considered finding a Naturopathic Doctor or the like to help you?

God bless you and your little girl.  I hope you come to peace with your decision and enjoy every day with her.

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zdmj31908
by Bronze Member on Apr. 27, 2011 at 8:48 PM

wouldnt vaxing her and making her body fight off an infection make her sicker? the vaccine itself is going to cause a small infection that her body has to fight off. isnt that why babies run fevers so frequently after vaxing? that would worry me bc actually catching one of the diseases from another person isnt as common but putting the disease right into her already weakened body would just seem silly to me.

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