2nd Dr. B visit

[KaraM]

Hi,

 

My dd8's first visit to Dr. B was last month. He confirmed the PANDAS diagnosis, doubled her abx dose and ordered 19 other tests.

 

I went back alone yesterday to review the tests results with him. Unfortunately, the lab screwed up on three of the tests, so we have to do those again. 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."

 

He reduced her abx dose a bit, but said she would have to stay on them at least until next spring in order to make it through the strep season. He thinks she will react to anyone in her circle that has strep. The abx should help her fight it off.

 

He asked how she was doing symptom wise. Compared to her worst, she is about 90% better (thank goodness). We don't have any other plan besides continuing on the lower dose abx. We will talk again if the new results on the three tests we have to do over indicate any problems.

 

I can't believe I didn't ask this of him, but is 90%the best we can hope for? Or should she continue to improve slowly? Should we be doing anything else to get her the rest of the way? We still try to do some ERP, but are not as diligent as we used to be. We do give her Ibuprofin and some Inositol as well.

 

I'll ask this of him once we get test results back, but figured I'd ask people here in the mean time...Does anyone have any thoughts?

 

On a different note - I am toast. Long drive down yesterday and back today. But at least my dd did not have to make the trip, too.

 

Thanks,

Kara

[justinekno]

Glad the appt went well. We had a similiar problem with our labs in that they neglected to do the pneumococcal tests. We'll go back to the lab and try to get them in time for our appt next week. Is that the same test your daughter had trouble making antibodies for? Did Dr. B. mention IVIG to you at all?

 

 

Hi,

 

I went back alone yesterday to review the tests results with him. Unfortunately, the lab screwed up on three of the tests, so we have to do those again. 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."

Edited July 7, 2010 by justinekno

[dcmom]

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!

[kim]

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.

[justinekno]

I was looking through past posts about pneumo titers today and I think it was Peglem that said something about it being significant because even though they are two separate bacteria, they are both encapsulated types of bacteria. The pneumo tests show the immune systems response to encapsulated bacteria. We are running my son's again but his first ones were on the low side.

 

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!

[P_Mom]

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!!!

Edited July 7, 2010 by P.Mom

[kim]

Kelly,

 

I don't think the test is even the same. I think that vaccination with Prevnar excludes those strains when testing for capsular polysaccharides. In other words, you would exclude the stains in Prevnar and chose strains that are likely to be circulating in your region aside from those found in Prevnar. I think the reason was that the antibodies that respond to Prevnar would have been induced by a different antidody since they are not responding to the cap. polysaccharide? I have something around here saved on this subject. I'll have to see if I can find it. I remember it seemed complicated!

[kim]

ok this was where I got that from

 

Under Discussion

 

http://www.clinchem.org/cgi/content/full/53/3/505

 

To overcome the problem of nonresponsiveness in children younger than 2 years, a conjugated vaccine (Prevnar®) was developed. This contains 2 µg of serotype 4, 9V, 14, 18C, 19F, and 23F and 4 µg of serotype 6B. Use of the conjugated vaccine will have an influence on the choice of serotypes to diagnose specific anti–caps-PS antibody deficiency. Once a patient has been vaccinated with Prevnar, the serotypes 4, 6B, 9V, 14, 18C, 19F, and 23F can no longer be used for antibody measurement, because the evaluation would assess the response to protein antigens rather than to polysaccharide antigens. For patients who have previously been vaccinated with the conjugated vaccine, other serotypes must be chosen.

[Fixit]

ok this was where I got that from

 

Under Discussion

 

http://www.clinchem.org/cgi/content/full/53/3/505

 

To overcome the problem of nonresponsiveness in children younger than 2 years, a conjugated vaccine (Prevnar®) was developed. This contains 2 µg of serotype 4, 9V, 14, 18C, 19F, and 23F and 4 µg of serotype 6B. Use of the conjugated vaccine will have an influence on the choice of serotypes to diagnose specific anti–caps-PS antibody deficiency. Once a patient has been vaccinated with Prevnar, the serotypes 4, 6B, 9V, 14, 18C, 19F, and 23F can no longer be used for antibody measurement, because the evaluation would assess the response to protein antigens rather than to polysaccharide antigens. For patients who have previously been vaccinated with the conjugated vaccine, other serotypes must be chosen.

 

So......

measuring any of these don't count???? wether they pass or fail???

not thtat it matters is guess in that case but ds only passed 2 of those mentioned

but the test we did had 23....and he only passed 1 other one.....

so the test has to be other eronious serotypes.....that doesn't make sense??..or i don't make sense more likely....

 

Kim can you explain this one to me too!!!

[T_Mom]

Kara--I really agree with DCMom that the passing of time with ongoing treatment (as necessary) is effective--but for our daughter it took a good 6 to 9 months with full strength antibiotics and two steroid bursts along the way to see her back to 100%.

 

I will never forget one doctor who had the audacity to tell us that "no one is 100%" when I tried to explain to him that I just wanted her back to herself--She did come back to herself, but no thanks to that professional--

 

Don't stop until you get your child back. As long as you can see ongoing progress, over time, that is a good sign--but it does take time.

[justinekno]

I thought "failing" the test was just a way to get the insurance company to pay for IVIG?

 

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!!!

[kim]

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?

[Fixit]

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?

 

i am seeings scott smith, the pa out of the dan office in fl...with 2panda boys also

yes, but not much we can do with it..but the fact he's had all 4 and many streps means something...i would think

going to see boubialouse..soon...i guess we'll see what he thinks...

i am not comfortable with revax...i don't think that kid will ever get another shot....

i guess we'll be fighting with the middle school, high school , college...

not trying to think that far...

currently trying to get ahold of the principle..to talk about the coming year..as school starts 8/9/10....thought i would have done something before school started and had time to recover...

going to talk acout current conditon...and the probalbitly keeping him out of school for however long if i get the go ahead with pex......

escpecially if i have to pay....

the pricnapla has been awesome so far...and the last day of school 5/25ish...i said i may have to keep him home next year for an extended period and he said they can work with that.......or have programs..so....we shall see...

now i have to get rid of the 3 and 7 year olds...mosttly the 3 year old.....

[kim]

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?

[KaraM]

To be honest with you, I can't tell exactly which test it was. He ordered the pneumococcal IgG (14 Serotypes) again, which would make me think they forgot that one and that the results I was talking about were from a different test - but I can't tell by the names. This stuff is really confusing for me...The results say the test name was "S. pneumoniae IgG Ab, 23 Serotypes." I don't see a name on my copy of the order that specifically states that. Maybe it was part of the IgG Subclasses or some other test...

 

Glad the appt went well. We had a similiar problem with our labs in that they neglected to do the pneumococcal tests. We'll go back to the lab and try to get them in time for our appt next week. Is that the same test your daughter had trouble making antibodies for? Did Dr. B. mention IVIG to you at all?

 

 

Hi,

 

I went back alone yesterday to review the tests results with him. Unfortunately, the lab screwed up on three of the tests, so we have to do those again. 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."