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Hello,

Just sent Dr. Latimer an email telling her Anthony is due for his shots--he will be 11 next week. She said to get the shots and space them one month apart any thoughts.

 

Deanna

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meningitis,chicken pox, and diptheria, tetanus and pertussis.

 

Deanna

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My son is 10. Our dr has recommended checking titers before any shots are given so that's the direction we will be going. We know his DPT levels are within normal range and he's had two varicella vaccines which is what is required by our state. We will also be opting out due to neurological issues as this is listed as reasons against getting the DTaP or Tdap vaccine. I wish I had read these guidelines years ago :angry:

 

meningitis,chicken pox, and diptheria, tetanus and pertussis.

 

Deanna

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Can you get his titers checked? Chances are, if he had the first varicella vax, he will have enough immunity, but the titer will tell you for sure. If he has enough immunity to varicella, he does not need a booster. That is the vaccine I would be the most concerned about giving b/c it is a live vaccine ( I also had a bad experience with one of my children with it).

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Is the vaccine for menigitis a live vaccine?

 

Deanna

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Our dd12 had her DT (we do not do Pertussis as her sister reacted as an infant) lasy August at this time. Weeks later she had PANDAS symptoms. She will never be vaccinated again as there is no way to verify or confirm whether or not there is a correlation.

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I have posted our vaccine story before in past threads, but I want to share this again for those who have not read it. I think the decision about whether and how to vaccinate a child with PANDAS can be very difficult and as a parent you should have the opportunity to make an informed choice.

 

When my son was 11 he had two vaccines (Chicken Pox and Hep A) at a time when his allergies were acting up and his ped said this was no problem. Within a couple of weeks, we saw zoning out periods that would last for up to five minutes, tics, facial grimacing, pacing, hyperactivity, major insomnia, focusing problems and deblitating OCD. In his case the exacerbation after the vaccines got so severe that he could not function in a normal way and there were multiple hospitalizations within the year following the shots. Now after three years (2 rounds of plasmapheresis and 3 IVIGS later), he is about 85-90 percent back to normal, but I do feel vaccines played a huge role in turning his mild case into a severe one, and I feel a responsibility to warn parents who are considering vaccinating a child with PANDAS. Based on our own awful experience, I now believe that children with PANDAS should not be vaccinated unless absolutely necessary. In our own case, the only way I would ever agree to a vaccine again for my son would be in the event that he had a type of injury that would require a tetanus shot. I hope this is helpful.

 

Ellen

 

 

Hello,

Just sent Dr. Latimer an email telling her Anthony is due for his shots--he will be 11 next week. She said to get the shots and space them one month apart any thoughts.

 

Deanna

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I have also posted somewhere on the board here about our experience with a live vaccine. If it were not for the Hep A shot my daughter had in anticipation of her twin adopted brothers coming home from Ethiopia in April, we would not be here now. Dr K also said it was a trigger for something dormant (wish it stayed dormant :-() and he said no more vaccines for her, now that she has active PANDAS.

 

PANDAS McNuggets w/fry/coke

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Hi Melinda, I remember meeting you. I hope your daughter is doing well. After my son's 3rd IVIG did not seem to resolve his remaining OCD issues, we saw an LLMD who feels that he does have lyme and Bartonella in addition to PANDAS. He is now on Minocycline (daily) and Tindamex (2 days a week) in addition to Zithromax. I will post an update on him soon (we only started this last week, so it's too early to tell if it's helping), and I will PM you with more specifics.

 

Ellen

 

Hi Ellen-

My daughter had IVIG with your son mid April. I'm so glad to hear he is 85-90% back to normal...Fantastic!! I'm wondering if you're considering the Igenex lyme testing?

Melinda

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I have posted our vaccine story before in past threads, but I want to share this again for those who have not read it. I think the decision about whether and how to vaccinate a child with PANDAS can be very difficult and as a parent you should have the opportunity to make an informed choice.

 

When my son was 11 he had two vaccines (Chicken Pox and Hep A) at a time when his allergies were acting up and his ped said this was no problem. Within a couple of weeks, we saw zoning out periods that would last for up to five minutes, tics, facial grimacing, pacing, hyperactivity, major insomnia, focusing problems and deblitating OCD. In his case the exacerbation after the vaccines got so severe that he could not function in a normal way and there were multiple hospitalizations within the year following the shots. Now after three years (2 rounds of plasmapheresis and 3 IVIGS later), he is about 85-90 percent back to normal, but I do feel vaccines played a huge role in turning his mild case into a severe one, and I feel a responsibility to warn parents who are considering vaccinating a child with PANDAS. Based on our own awful experience, I now believe that children with PANDAS should not be vaccinated unless absolutely necessary. In our own case, the only way I would ever agree to a vaccine again for my son would be in the event that he had a type of injury that would require a tetanus shot. I hope this is helpful.

 

Ellen

 

 

Hello,

Just sent Dr. Latimer an email telling her Anthony is due for his shots--he will be 11 next week. She said to get the shots and space them one month apart any thoughts.

 

Deanna

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Hi Melinda, I remember meeting you. I hope your daughter is doing well. After my son's 3rd IVIG did not seem to resolve his remaining OCD issues, we saw an LLMD who feels that he does have lyme and Bartonella in addition to PANDAS. He is now on Minocycline (daily) and Tindamex (2 days a week) in addition to Zithromax. I will post an update on him soon (we only started this last week, so it's too early to tell if it's helping), and I will PM you with more specifics.

 

Ellen

 

Hi Ellen-

My daughter had IVIG with your son mid April. I'm so glad to hear he is 85-90% back to normal...Fantastic!! I'm wondering if you're considering the Igenex lyme testing?

Melinda

Ellen- Oh...he is such a sweet & courageous boy! I hope your family's long journey brings him back to 100%! I look forward to hearing the specifics...Thank you. Melinda

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