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Posted

Thank you for giving me some hope. I'm glad you have your dd back "almost 100%"

 

It was the S. pneumoiae IgG Ab, 23 Serotypes. He did not specifically say GABS. He just said she is "unable to fight off 17 serotype species of strep." He also said she would be vulnerable during the "strep" season.

 

karam-

 

A couple things. I would say that you can hope for 100%. BUT, it will take time. My dd is doing really well now- I think almost 100%. But it has taken about 9 mos of healing, along with aggressive treatment to get her there. Whatever treatment methods work (abx, steroids, ivig or pex), I really believe TIME is a huge factor that cannot be eliminated. We were able to get my dd to 90%, but time has helped her improve more. The other thing is keeping them away from exposure and any immune challenges (easier said than done).

 

I also want to know- Dr B said they failed strep titers and they do not have the ability to fight strep. I am thinking you are talking about the strep pneumo titers that your child failed. Does Dr B say that this means your child cannot fight GABS? From what I know, these are different bacteria. Many parents seem to have found their kids fail these titers, I am looking for any info that would tie them into Group A strep- the type that the NIH has linked to pandas.

 

thanks- glad you have seen such great improvement!

Posted

Hi Kim,

 

She receive 4 doses of the "Pneumo Conjugated Vaccine - 7 between June 2002 and April 2003.

 

Does this make more sense? (I have no idea - such a steep learning curve...)

 

Thanks,

Kara

 

Kara,

 

Did your daughter receive Pneumovax or Prevnar? Was there a challenge by revaccination prior to titer testing?

 

I'm having such a hard time with this statement.

 

The most significant of the test results we did get back indicates that she is not creating antibodies for 17 of the 23 strep seratypes, which, in his words means "she is unable to fight 17 of the 23 seratype species of strep."

 

While I'm by no means any expert in this area, I'm just not understanding how an 8 year old is supposed to show protective antibodies to 23 serotypes.

 

 

 

 

 

Posted

Ok - as I read through everyone's posts, the questions you are asking/responses you are helping me understand more. Thank you.

 

I'm looking at her immunization history. If the number at the end indicates the number of Serotypes in the vaccine, then I thnk she would only have been immunized against 7.

 

There are 4 dates next to the vaccing "Pneumo Conjugated Vaccine - 7"

Underneath that is "PCV 13 (prevnar 13)" - no dates filled in, so it looks like she did not get this.

 

Dr. B. did not have a copy of her immunization history when I saw him. I had it faxed down yesterday. So I will ask him about this then.

 

Thanks again,

Kara

 

 

 

Yes, Kim, I have a hard time with the same statement. An 8 year old would most likely only have received the Prevnar vaccine...which only provides protection against 7 of the serotypes. Passing 6 of the 7, for an 8 year old......in my mind...is a GOOD sign. What is up with that????

 

Unless she has had the Pneumovax vaccine...that statement from Dr. B is just plain wrong! Scary!!!

Posted

I'm actually the one who used the word "significant." I chose that because it was really the biggest area of discussion of us.

He did not recommend IVIG at this point. He said if she relapsed of if the other tests indicated something, then we might consider pursuing.

 

Fixit,

 

I think Buster came up with the best data on how long it might be reasonable to see elevated titers from vaccination with Prevnar. I don't know if it was all that conclusive and I'm not really the one to try to interpret. My general feeling on this subject is, without vaccination and then a challenge with revax, I personally wouldn't base a decision about something like pursuing IVIG based on the type of info in Kara's original post (and I wouldn't be comfortable with a vax challenge). I'm not saying that I know all of the info. and that her Dr. doesn't have a good explanation of why he thinks her daughter's results are significant, just that I think it's a good idea to have a good understanding on topic before basing decisions on it.

 

Are you saying that your son showed protective levels to 2 of the strains contained in Prevnar, and one other ? Did your Dr. find that significant in your son's case?

Posted
but the fact he's had all 4 and many streps means something

 

Fixit, does that mean that he had 4 doses of Prevnar? Can you remind me of how old your son is again?

 

 

yes..prev.....and he is 10

Posted

Kara....since your daughter only had the Prevnar vaccine, and, yes, you are right....it only gives protection for 7 of the 23 serotypes they tested for........it is no surprise she only passed 6 of the 23....she was not vaccinated for 23. That DOES NOT MEAN, that, if exposed naturally to one of the other 23 strains not vaccinated for, that she would NOT mount a response. 6 of 7 is pretty darn good....and, she could very well mount a normal response to the other strains of s.pneominia. ( which is diffrent from strep!)

 

Do you have the serotypes there with you...which ones did she pass? I am still surprised Dr. B said "she would not be able to fight off 17 serotype species of strep." What is he basing that claim on???

Posted

I don't think she had Prevnar - she had Pneumo Conjugated Vaccine - 7 (is that the same thing as Prevnar??)

 

I do have the serotypes she passed and did not pass:

 

She passed:

19F, 22F,23F, 6B, 11A, 7F

 

She failed:

1,2,3,4,5,8,9N,12F,14,17F,20,10A,15B,18C,19A,9V,33F

 

Do you have any more thoughts?

 

Again, Dr. B. did not have her vaccination/immunization history at the time of the appointment. I had our pediatrician send it after.

 

Thanks again,

kara

 

 

Kara....since your daughter only had the Prevnar vaccine, and, yes, you are right....it only gives protection for 7 of the 23 serotypes they tested for........it is no surprise she only passed 6 of the 23....she was not vaccinated for 23. That DOES NOT MEAN, that, if exposed naturally to one of the other 23 strains not vaccinated for, that she would NOT mount a response. 6 of 7 is pretty darn good....and, she could very well mount a normal response to the other strains of s.pneominia. ( which is diffrent from strep!)

 

Do you have the serotypes there with you...which ones did she pass? I am still surprised Dr. B said "she would not be able to fight off 17 serotype species of strep." What is he basing that claim on???

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