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"It might not help, but it definitely won't hurt" so vaccinate!

post #1 of 13
Thread Starter 
My son has Velocardiofacial Syndrome or DiGeorge Syndrome, a genetic chromosomal deletion 22q11.2. Part of the way he's effected is a Primary Immune Deficiency (t-cell deficit). Because of his immune deficiency, most literature says not to do any live-virus vaccines, but that the rest should be safe.

To date my son has not had any vaccines, but did receive Synagis his first winter (RSV immunoglobulin...he still got RSV that winter and the next winter)

His Infectious Disease specialist, who manages his immune deficiency, is very pro-vaccine and is always trying to talk me into starting the series. I'm not going to unless something changes (not sure what that "something" would have to be, but I'm not going to say absolutely no to vaccines, because he is definitely at much higher risk of complications from both the vaccines and the illnesses).

Here's his reasoning...because of his low t-cell count, it's not likely that my son will mount an appropriate antibody response to the vaccine. It might take more doses than the normal schedule before he'll have testable antibodies (if he ever does, we won't know until we try). So the dr's point of view is "it might not help him [might not provide immunity] but it certainly won't hurt him, so we might as well try."

Ha! Obviously I disagree, and I truly can't understand the logic/reasoning! Even the most pro-vaxer has to agree that there ARE some side effects! And anyone with half a brain would see that my son is at risk of increased side effects, so why would they think it's okay to give him more and more doses?

I feel like we're in a "damned if we do/damned if we don't" situation with him, because children like him are the ones who truly need protection from all the diseases vaccines are designed for, yet children like him are the ones that can't/shouldn't get them. He's doing really well all things considered, has had lots of illnesses, but has come through them all very well.
post #2 of 13
I take it your sons Infectious Disease specialist isn't only treating him-have you asked how vacs have effected his other patients? Does he treat any one that has your DS exact condition? If so I would ask to speak to other patients, if he won't do that, do you have anyone else with this that you could ask how their child did? If the Infectious Disease specialist questions you and won't allow you information or the ability to talk to others I would find another Infectious Disease specialist to deal with who might be more open.
post #3 of 13
Thread Starter 
It's not a huge problem, it's almost become comical, I know he's going to bring it up, he knows I'm going to decline, he'll throw some more information at me, I'll bring up more research I've done, and that's that. It's not a fight or anything.

There's no published research about how 22q kids do with vaccines. And the reason? CHOP is the big treatment center nationwide for this syndrome, and guess who works there? Dr Offit. So the only published recommendations are to confer with an Immunologist or Infectious Disease dr before receiving any live-virus vaccines.

I have been able to find published studies on AIDS kids, and can compare their t-cell counts to my son's and use those recommendations. There are tables that say "if t-cell is more than this number, don't vaccine; more than this number, vaccinate with caution; more than this number, no restrictions." But there doesn't seem to be much that will show me his chances of retaining immunity.

I just found the overall attitude of "it won't hurt" to be surprising! So basically he'd be comfortable with giving my son the whole series of HiB, for example, then testing his immunity, and if he's not immune, doing the series over again (or at least one more booster). I don't understand that logic.
post #4 of 13
No advice, just wanted to send you hugs
post #5 of 13
Thread Starter 
Thanks Marnica.

He made it through RSV twice, NTHi (although that one required 4 weeks of a PICC line, it was pretty bad), chicken pox (shed for 9 weeks!), H1N1 (did get secondary pneumonia, but stayed out of the hospital!), Rotavirus (was in patient for a week, but mostly as a precaution and for close monitoring), and countless colds/coughs/cruds with no "name".

The one that does bother me is Pertussis, because he has airway malformations that would make it really really bad for him. But I hate that vaccine, and just can't bring myself to do it.

Otherwise, none of the vaccines protect against illnesses that bother me. Flu maybe, but I think I've come to terms with that one (getting through H1N1 helped build my confidence).
post #6 of 13


While I know many laypeople are led to assume there are absolutely NO side effects possible whatsoever (even though those same people are taught by Reader's Digest et al that "even aspirin" has side effects and can even be lethal) it always floors me to hear of a doctor making this pronouncement.

Every time, I wonder: do they really believe that or is this some agenda?
post #7 of 13
Quote:
Originally Posted by 2boyzmama View Post
He made it through RSV twice, NTHi (although that one required 4 weeks of a PICC line, it was pretty bad), chicken pox (shed for 9 weeks!), H1N1 (did get secondary pneumonia, but stayed out of the hospital!), Rotavirus (was in patient for a week, but mostly as a precaution and for close monitoring), and countless colds/coughs/cruds with no "name".
Good grief!!! What a trooper.

Quote:
Originally Posted by 2boyzmama View Post
The one that does bother me is Pertussis, because he has airway malformations that would make it really really bad for him. But I hate that vaccine, and just can't bring myself to do it.
That's the one that would bother me too. I'm not in your shoes but I think I'd still lean against it though. I don't know if my reasoning is really good but I feel it would be harder for me to deal with actively causing harm than not taking an action, you know... but that's probably totally misguided.
post #8 of 13
Thread Starter 
Quote:
Originally Posted by laohaire View Post
Good grief!!! What a trooper.



That's the one that would bother me too. I'm not in your shoes but I think I'd still lean against it though. I don't know if my reasoning is really good but I feel it would be harder for me to deal with actively causing harm than not taking an action, you know... but that's probably totally misguided.
I have a similar thought...by giving him the vaccine, I am *choosing* to take a calculated risk. By leaving it to chance that he might get sick, I am, well...leaving it to chance! Sort of indemnifying me. BUT, I can turn that argument around and say that deliberate inaction is an action in itself...which makes my brain hurt because then I start talking myself into circles!

The deciding factor against DTaP was a family history of reactions to the old version of the vaccine. Although DTaP is reformulated, I am still contra-indicated from receiving it because of my severe reaction as a child. I asked this same dr whether it would be prudent for me to get a booster of TDaP (the adult version) and when he reviewed my reaction, he said NO! When I pointed out that my brother and my mother had similar reactions, thus suggesting a family tendency, he said "if it makes you more comfortable, you can stay here at the hospital for observation after your son's vaccine" which made me LESS comfortable, you know! Almost like he thinks there is an off chance that something might happen...I don't know...

He's healthy--for him--so we're going to continue on this path for now.
post #9 of 13
Yes, inaction is a choice too. Sigh.

I guess it's more like this, maybe...

1) If you give the vaccine and he has a reaction, you feel responsible because it was a direct result of your choice.

2) If you do not give the vaccine and he gets pertussis, you unfortunately feel responsible as well... but you also don't know for sure that the other choice would have been right either. I mean, you won't ever be able to decisively say "I should have done it."

3) If you give the vaccine and he has no discernable or provable reaction, all is mostly well, though you may doubt the decision anyway (which is even worse since he already has health issues; if he has any complications or conditions down the road that could possibly be linked to the vaccine, no matter how unproven or distant the possibility, you might wonder).

4) If you don't give the vaccine and he never gets pertussis, this is the only situation you can really feel totally good about.

As Ben Franklin pointed out... we parents will feel horrible if our kid suffers as a result of a VPD... and we will feel horrible if our kid suffers as a result of the vaccine. So you have to decide which one is the safest by the logic. Unfortunately the logic is purposefully clouded in all directions. None of us can produce any numbers that show the VPD to be safer than the vaccine or vice versa. There may be such numbers out there but we can't trust them.

Argh, I am so not helping you at all. But I'll post anyway since maybe at least it will help you sound out your own thought process.
post #10 of 13
Actually, you know what... with your family history I think your choice is pretty clear. (Whew).
post #11 of 13
There is at least one thread in the archives with information on treating pertussis with Vitamin C and other natural resources. I'd do some research to improve the odds. Even if you did the vaccine, he could still get the illness (especially with a weak immune response), so preparing yourself and figuring out what you can do seems like the best way forward.

Good luck, you are BOTH troopers.
post #12 of 13
Vaccines are magical and harmless like candy, I guess.
post #13 of 13
Quote:
Originally Posted by Deborah View Post
There is at least one thread in the archives with information on treating pertussis with Vitamin C and other natural resources. I'd do some research to improve the odds. Even if you did the vaccine, he could still get the illness (especially with a weak immune response), so preparing yourself and figuring out what you can do seems like the best way forward.

Good luck, you are BOTH troopers.
I second this. The children and I all came down with pertussis and followed the recommendations I read about here. DH got sick and did not choose to do anything special for himself. The kids and I had a mild case, no severe coughing. It cleared up in 3 weeks or so. DH was really sick for 6 or 7 weeks with a nasty, painful cough.
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