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FTT/eczema=reaction--sources?  

post #1 of 5
Thread Starter 
As I've mentioned in another thread, we're going rounds with a major university/hospital children's center. On paper, ds2 (age 3.5) has a severe immune defiency. IRL, he has very seldom been sick: one very mild ear infection at 10 months, and a very severe experience with fifths disease over the summer. He does have multiple food allergies and we've got a good handle on those.

The immunologist, whom we met with on Friday, wants to give him Prevnar. When he realized that we had no intention of vaxing, he gave us the third degree, minus only the searing lights and dripping water and truth serum, and then abruptly dismissed us. I have little doubt that he will be contacting our other doctors and we'll be hearing from them next week. In the meantime, I've been gathering more info about Prevnar (of particular interest have been the warnings about latex allergy, since ds2 has a severe allergy to it, and, that point was blatantly ignored when I brought it up the other day).

What I've not been able to find is an official description that matches our son's reaction to his 2-month vaxes. Within 10 days of his vaxes, he started breaking out in patches of eczema that ultimately spread from his scalp to his feet. He scratched out all of his hair, and every dr. we saw was visibly shaken. He also stopped growing for five months. When he was seven months old, he weighed within an ounce of his weight at 2 months old; his length was the same. Over the next five months, with his allergens eliminated and his protein increased way beyond the norm for his age, he gained a little less than two pounds, but he did grow an inch. It's been a very long path, but he's healthy now and I'm not willing to compromise his life again by giving him a vaccine just to see if he can create antibodies.

I know there are other kids who have had similiar reactions, but I haven't been able to find appropriate sources that describe this response. If anyone has any links, I would greatly appreciate the help. A friend of mine has lent me a thousand back issues of Mothering with all the articles relating to vaxes marked and it's been really amazing to read some of the old issues.

Thanks!!
Missy
post #2 of 5
I think I replied to your thread elsewhere...

I would write back to the immunologist, and ask him to give you his reasoning for using the vaccine in writing, including, given your son's history, his assessment of what might be likely to happen to your son, given that he has had one reactions already.

Point out that you mentioned his allergy to latex, and that the needle has to go through a rubber stopper, and that was an issue he didn't address, and could he please explain why?

And also ask him to explain why, in writing, he got so angry with requests conveyed in an even reasonable manner.

Keep the letter on file. Most likely he won't reply.

But its very important to keep a paper trail in case CPS gets involved, and keep looking for information.

Go to this URL:

http://cdc.confex.com/cdc/nic2004/te...paper_5008.htm

Look at the names of the people involved. Their e-mails are also there as well. They are involved in VAERS. You never know. They might be of use to you on a one-to-one basis. But then again, they might not.
post #3 of 5
Thread Starter 
Quote:
Originally Posted by Momtezuma Tuatara
I think I replied to your thread elsewhere...
Yes, thanks! You responded to the thread I had started before the appt. I added an update yesterday and a note of thanks to everyone who had helped, but the thread has dropped waaaay back now. This has been a very active forum today Very interesting reading, BTW.

Quote:
I would write back to the immunologist, and ask him to give you his reasoning for using the vaccine in writing, including, given your son's history, his assessment of what might be likely to happen to your son, given that he has had one reactions already.
I like the idea of getting something in writing and of pointing out that he completely ignored my concern about latex. But, from the expression on his face when we discussed the reaction, I'm pretty sure that he doesn't even believe it was related. I know I've heard of other children whose reactions mirrored my son's; but, I haven't been able to find anything specific that identifies it as a reaction. We live in Virginia, not far from NVIC and I'm thinking that it might be a good idea to contact them. Several of the moms in my homeschool group have the same ped. and, since most of their children are unvaxed, they're really anxious to see how she's going to respond.


Thanks for the link. I've been poking around the VAERS site, hoping to find some info that I might have missed. A personal contact might be a good thing.

I'm definitely not giving up. I'm trying to compile as much as possible. Even if I never have to actively use a lot of the info, the knowledge gives me greater confidence when I'm faced an aggressive doc.

Missy
post #4 of 5
Quote:
Originally Posted by Missy
Yes, thanks! You responded to the thread I had started before the appt. I added an update yesterday and a note of thanks to everyone who had helped, but the thread has dropped waaaay back now.
If you give me a URL I'll look.


Quote:
I like the idea of getting something in writing and of pointing out that he completely ignored my concern about latex. But, from the expression on his face when we discussed the reaction, I'm pretty sure that he doesn't even believe it was related. I know I've heard of other children whose reactions mirrored my son's; but, I haven't been able to find anything specific that identifies it as a reaction.
I'd contact those people at VAERS... or troll their data base.
Quote:
We live in Virginia, not far from NVIC and I'm thinking that it might be a good idea to contact them.
Might be...
Quote:
Several of the moms in my homeschool group have the same ped. and, since most of their children are unvaxed, they're really anxious to see how she's going to respond.
Well, that's not relevant, unless their kids have similar immune systems. Besides which you've said you're not going to...


Quote:
Thanks for the link. I've been poking around the VAERS site, hoping to find some info that I might have missed. A personal contact might be a good thing.
WEll.... have a listen first, because the voices sound nice, but I think you'd have to be careful. Might be better to give them a ring first, but on the other hand, an e-mail is a paper trail.

Quote:
I'm definitely not giving up.
You can't coz it they call SPC you're dog-meat without a paper trail.
Quote:
I'm trying to compile as much as possible. Even if I never have to actively use a lot of the info, the knowledge gives me greater confidence when I'm faced an aggressive doc.

Missy
That's the best thing about it, is that it puts a rod up your backbone. Key though, is to always stay polite and respectful.
post #5 of 5
Thread Starter 
I just saw this response; for some reason, I didn't get the email notification.

I read through the link you sent yesterday. Personally, I found the presentation to be very enlightening. And scary.

Quote:
Well, that's not relevant, unless their kids have similar immune systems. Besides which you've said you're not going to...
See, that's the interesting thing about our group...we all kind of stumbled onto each other because several of our children have severe allergies and we've made very similar lifestyle choices. One of the moms comes from a family with a history of immune defiency and it's been passed on to at least one of her children. Another mom has a child a little younger than my son with an equally long list of allergies and we share all the same doctors: ped., local allergist, ped. gastro, and consulting allergist (the last at this same hospital/university research center as that immunologist). None of these doctors are within 30 minutes of each other, because we each sought doctors who would work with us and respect our parenting choices. Our ped. is about as ap-minded as you can find in this area, but everyone's kind of wondering how she's going to respond to pressure from a larger, influential institution of medicine. She knows we have no intention of vaxing, but it will be interesting to see it play out. The homeschool group is based close to a hour from my home, but it's been worth the time and the effort to build this community despite the distance. So, actually, this experience may end up being very relevant to the other families.

Here's the link to the update: http://www.mothering.com/discussions...=373710&page=2
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