here is my issue.

[bri276]

I don't want to do anymore vax. and I'm definitely NOT doing hep b, mmr, varicella. don't care, won't budge on those, feel comfortable defending that choice to any and every health professional.

but my daughter has a chromosome disorder. you have no idea how many different doctors (she is 12 months and has: a surgeon, cardiologist, neurologist, ear nose & throat, pediatrician, audiologist, geneticist, physical therapist, and endocrinologist.) they see her charts and ask about her vax history.

I honestly feel I would be in danger of losing custody of my child if I did not at least partially vaccinate her. not because I have ever done anything wrong or been in trouble or anything- but that some doctors are so adamant that they'd report me solely for refusing vax.

I also have many, many battles to fight for her. To get the least amount of interventions and treatments and medications possible- luckily, right now she is on NO medication and has only had antibiotics once during surgery. I grew up in a medical family, both parents are physicians. My dad's a surgeon and is not pro-vax, but my mother is a ped and is totally brainwashed- I mean if there was a vax for the common cold she'd be jabbing us left and right.

anyways. I know the best thing for my daughter is to have me as her advocate. I know the best thing for her health would be no more vaxes. BUT I'm not sure the risk of vaxing=the risk of her doctors completely tuning me out and viewing me as the crazy crunchy anti-vax mom and not listening to another word I had to say.

does this make sense? I don't have the option of just saying "I don't care what they think" - I have to care. If I don't, my daughter won't get the absolute best care possible in every other sense all the time. Where I am right now with the selective vaxing, no one cares, no one questions it, and I have good relationships with her most important doctors- they respect my input on her care even when I'm asking for alternative and less invasive treatments.

I'm not asking for permission to vax or endorsement, just sort of putting it out there that I don't see a way out, if someone else does, tell me.

[~member~]

Use google and type in "child welfare law" and then your state.
Like one MDC poster said, "If you don't know your rights, then you have no rights."
HTH

[Plummeting]

Why can't you be religiously opposed to vaccinations? If you really don't want to vaccinate, say that you've got new religious beliefs and you don't intend to vaccinate. In most states, they can't turn you over to CPS for that alone - they'd have to have some other reason. I'm a paranoid worrier about CPS, so I feel your pain, but they really cannot take your child for that reason.

[~member~]

http://www.mothering.com/discussions...d.php?t=487616 This is the current thread 'talking' about our rights when it comes to vaccines.

[ericswifey27]

Originally Posted by Plummeting

Why can't you be religiously opposed to vaccinations? If you really don't want to vaccinate, say that you've got new religious beliefs and you don't intend to vaccinate. In most states, they can't turn you over to CPS for that alone - they'd have to have some other reason. I'm a paranoid worrier about CPS, so I feel your pain, but they really cannot take your child for that reason.

That's what I told DH. He insists that since we vaxed our son in the past, we have to continue, which makes no sense. For the preschools here you are supposed to vax but I am sure I can get a religious exemption form, I am just not sure if the preschool will decide not to take him, since he would be attending as an out of district student, in a reverse mainstream program.

So my concern is more that DS will be discriminated against despite the exemption.

Good luck

[bri276]

that does make me feel better about the CPS thing, definitely. thanks for responding so quickly

really the other issue is unsolvable though- even if I can stand there and say to my dd's surgeon (or whatever other mainstream dr) "Well legally I can have a religious exemption blah blah" all he is thinking is "You are one of those crazy religious wackos and everything you say from this point on is tainted by that fact". and I lose valuable ground in working with them.

for example, like the last time she was in the hospital. I wanted her out of there ASAP because we all know hospitals are the best places to get an infection. So I was able to discuss calmly with her physicians the requirements they wanted accomplished before discharging her (ie, how much fluid taken by mouth, whether the tylenol should be oral or suppository, stupid hospital policies etc). This is my kid's life. If I'm looked at as "smart mom, knowledgable, we can trust her to make decisions" (which, not to pat myself on the back, but a lot of her dr's DO look at me that way right now), I get a lot further with them than "crazy mom, doesn't believe in mainstream medicine, don't trust her as far as I can throw her" It could mean a life or death decision for my kid. make sense? I don't want to kiss their butts, but I stand to lose SOOOO much ground if I completely don't vax..... I wish to God that wasn't true.

[onlyboys]

No, you don't have to vax always if they've had a vax.

Your faith can change, right?

[~member~]

[Plummeting]

Originally Posted by bri276

that does make me feel better about the CPS thing, definitely. thanks for responding so quickly

really the other issue is unsolvable though- even if I can stand there and say to my dd's surgeon (or whatever other mainstream dr) "Well legally I can have a religious exemption blah blah" all he is thinking is "You are one of those crazy religious wackos and everything you say from this point on is tainted by that fact". and I lose valuable ground in working with them.

I totally understand that - I just thought you were worried about the docs harrassing you, which they might be less likely to do if you claimed religious reasons for not vaccinating. You still have the option to refuse vaccinations based on the grounds that they were never tested in children with your daughter's chromosome disorder, therefore you have no reason to believe they are safe for your daughter. This is actually a very educated stance to take, and CPS still can't take your child for it.

[Momtezuma Tuatara]

Hi Bri,

Can I ask a question first, because I'd be much better placed to answer you properly if I know the answer.

What is the chromosome disorder, and why do the doctors feel that a chromosome disorder makes it more important to have the vaccines? If they feel that a chromosome disorder makes it much more likely for her to get sick, can't they see that that same issue makes it far more likely for her to have a serious reaction as well?

[bri276]

she has an unbalanced translocation resulting in a portion of chromosome 3 to be attached to the bottom of 18.

I don't think they view it as more important for her to have the vaxes- they think it's important for all children, DD included.

I have thought many times that her disorder puts her at higher risk for adverse reactions but have no evidence to back it up and I know, KNOW, 99.99% of her physicians are going to categorically disagree with me, back me into a corner asking for proof (of which I have none).

For one thing, she lacks growth hormone due to a pituitary malformation (we're getting the script for the GH soon), and though she's a year old she's only 24" and 17 lbs. So I think I'm going to at the very least tell her ped we're delaying until she catches up to at least being somewhere on the chart for her age- she's so tiny, it would be like giving a 6 month old the 12 month schedule.

[~member~]

Not sure if you already have seen this link, but here is the one for contraindictions...
http://www.cdc.gov/nip/recs/contraindications_guide.pdf

[suschi]

Originally Posted by bri276

I have thought many times that her disorder puts her at higher risk for adverse reactions but have no evidence to back it up and I know, KNOW, 99.99% of her physicians are going to categorically disagree with me, back me into a corner asking for proof (of which I have none).

And what evidence or proof have they supplied you with showing it was safe to vaccinate a child with this disorder?

I would ask to see the studies done in children like yours showing the safety and effectiveness of the vaccinations. Would be a miracle if they could provide it, since vaccines are only tested in HEALTHY children.

[alegna]

Just don't discuss it. Say it's not up for discussion and go on with whatever the business at hand is. Vaxing is not related to your child's medical issues.



-Angela

[Plummeting]

Originally Posted by suschi

And what evidence or proof have they supplied you with showing it was safe to vaccinate a child with this disorder?

I would ask to see the studies done in children like yours showing the safety and effectiveness of the vaccinations. Would be a miracle if they could provide it, since vaccines are only tested in HEALTHY children.

Yes! It is not up to you to prove to them that the vaccines aren't safe for your daughter. It's up to them to prove to you that the vaccines are safe for your daughter. See the difference? Whatever studies they have to prove safety for "normal" (sorry, that's not a good choice of words, but hopefully ykwim ) children, do not apply in your daughter's case. It is never your job to prove anything to them. If they have a vaccine or treatment or drug they want to give your daughter, they need to prove it to you! They may not like your decisions, but if you're firm and confident, they aren't going to give you crappy care because of it.

[wonderwahine]

I agree with plummetings advice earlier...........when someone asks, just say you are religously opposed, they cant take your child away for that, if they could, jehovahs witnesses would have their kids taken off them every day because they are opposed to blood transfusions etc.

I think her chromosome disorder would make the risk of adverse reactions higher, regardless of what the drs say, shes your daughter, not theirs.

[Emmeline II]

Below are some "fight CPS" links; the first one offers lawyer referals.

http://www.falseallegation.org/index.shtml

http://familyrightsassociation.com/c...parents_guide/

http://www.fightcps.com/

[Deborah]

The problem doesn't seem to me to be the threat of CPS. The problem seems to me to be how to get the doctors treating her daughter to take her seriously if she is rejecting a central tenet of modern medicine: the wonders of vaccines.

Best suggestion so far is to ask, innocently, if any of the recommended vaxes have been tested on children with similar problems. Do they know of any case studies that might be relevant? Doctors will most likely look totally blank and say something like: But I'm sure it is safe. Again, innocently: Would you recommend other drugs and treatments with no safety record at all for a child with this condition? And vaccines are NOT emergency medicine.

So, raising concerns without being directly challenging to their authority might work.

Deborah

[bobandjess99]

i I just wanted to say i understand what you are saying about not being taken as seriously if they think you are a whacko.

It's clear you know can refuse the vaxxes, but you are afraid of them thinking you are crazy, or, possibly even retaliating covertly, right?

Like, instead of being able to get your child out on early release, suddenly there are "complications" and your kid isn't released.........instead of being able to have a "calm, rational" conversation and have the docs take you seriously and be able to negotiate and get the treatment you want, you are treated like a crackhead.....you might suddenyl find yourself at odds with them...at best, you might get treated coldly, crappily, suddenly your wishes are no longer respected....or at worst, some doc might try to "punish" you, and suddenly your kid is being threatened with treatments you don't want, you are being threatened with CPS.....Not for "not vaxxing" of course, but for some other reason (at least that's what they'll say) and you could really be putting yourself in a much weaker position in terms of being able to advocate for your child.

I think it does suck. And yes, even though your faith can change, i think that by vaxxing at first, you have put yourself in a weaker position, because the sudden change is likely to have them worried as well.....
Like you said..you have LOTS of battles to face, and it might be easier to pick them wisely......if there are a few vaxxes that you feel you want to give in order to smooth your relationship with the docs, and you feel okay doing that, i do understand what you are saying. I can't say i agree, but im not in your shoes. If i were, i don't know how i would feel.
It sucks you even have to consider poisoning your child in order for doctors to take you seriously.
What the heck type of world do we live in?

[bri276]

Jess- exactly.

I think for now my plan of action is refusing the most dangerous ones based on the fact they can't prove them to be safe for her condition, yet complying with the lesser of the evils (like prevnar, hib, polio). Some of her docs may still believe me to be an uninformed paranoid weirdo, but hopefully they won't have the energy to argue with me about the few vaxes I don't do and instead I'll turn the focus on the ones that I do accept. as it is, when they ask me "are her vaxes up to date?" I always say "Yep!" and then silently in my mind "as far as I"m concerned"

it is a sad world. I just want to do what's best for her-- the good thing is, once she's past her cleft palate surgeries, we HOPE there will be no further reason for hospitalizations and in that case, questions about her vax history will be less relevant (speech therapists don't have much cause to ask about things like that, yk?) thanks again for the help.