Do antibiotics really work

[norcalmom]

Has anyone done Cunningham tests pre and post antibiotics? This question is for those who have kids in 100 percent remission on antibiotics. If there are any out there that did Cunningham tests.

 

Thet NIMH is doing an ivig study, not an antibiotics study....so I'm wondering if they know something we don't about effectivness of antibiotics. I'm sure they have significant number of pre antibiotics and post antibiotics test results.

 

Antibiotics didn't work for us, they sure helped alot, but even while on them and not in exacerbation ds had camK ii level of 176...hopefully the ivig will work.

[KaraM]

I've thought about doing the Cunningham test a second time, because I'm curious if/how much the results change, but the $400 price tag is just too much to justify right now. We've only done antibiotics (and ibuprofin) with my daughter and she is doing quite well with just that (fingers crossed).

[thereishope]

My son improved with antibiotics and time. However, we never did the Cunningham study. I wasn't on latitudes for his first two exacerbations and when he was in his last full blown exacerbation, the Cunningham study was just really starting to be talked about on here and I knew he was PANDAS. Granted, I'd be curious to know now, but I have no real reason to do it.

Edited August 22, 2010 by Vickie

[norcalmom]

Yes, that's probably why I won't get any response to this question unless dr Cunningham has written or talked about it. The antibiotics are cheaper than rhe test, and if kids improve enough that they appear 100 percent, why spend the money.

[sptcmom]

Yes, that's probably why I won't get any response to this question unless dr Cunningham has written or talked about it. The antibiotics are cheaper than rhe test, and if kids improve enough that they appear 100 percent, why spend the money.

Well, we didn't have time before IVIG to do the Camkinase test. So we did it for the 1st time at 12 weeks post IVIG with Dr K. Now,Dr B wanted us to do it since we're switching to him hopefully. DS is at 90%, had two strep exposres and two loose teeth during the summer. The CamKinase is 149 and the only antineuronal titer thats high 4000 is the D1 one. The rest are high normal but still normal range.

[Kayanne]

I'm going by memory here, I don't have the time to search for it...but I think that Beth Maloney's PANDAS Foundation is associated with an antibiotics study. Drs. Geller and Murphy are involved. Perhaps someone has more info on it.

[thereishope]

I know Murphy is doing a Omnicef study. I thought Geller was going to do an Augmentin study, but I thought that got postposed. I don't think PF had any direct affiliation with it.

[norcalmom]

Yes, that's probably why I won't get any response to this question unless dr Cunningham has written or talked about it. The antibiotics are cheaper than rhe test, and if kids improve enough that they appear 100 percent, why spend the money.

[EAMom]

It would be great if Murphy/Geller did Cunningham tests on these folks (pre and post antibiotics) as part of the study, but that might be too much to expect?

[norcalmom]

I would think that anyone that buys into the theory that anti neuronal antibodies are causing the pandas effect would be running the tests.

I think we acn forum folks know it helps, but what would be interesting to see is if correlation between behavioral scores(YBOCS?) and cunninhams test scores.

I think we need the c test to have relation to all these studies, so we reach a day when a kid goes int to pediatrician and the ped just checks a box on a lab form to see if kid has pandas (along w/strep,Lyme,and other known causes!)

They need to be running IQ test before and after too.

One can dream!

[sptcmom]

I would think that anyone that buys into the theory that anti neuronal antibodies are causing the pandas effect would be running the tests.

I think we acn forum folks know it helps, but what would be interesting to see is if correlation between behavioral scores(YBOCS?) and cunninhams test scores.

I think we need the c test to have relation to all these studies, so we reach a day when a kid goes int to pediatrician and the ped just checks a box on a lab form to see if kid has pandas (along w/strep,Lyme,and other known causes!)

They need to be running IQ test before and after too.

One can dream!

well I hear that Madeleine Cunningham is now saying that elevated titers and Cam Kinase can be Lyme related as well, HUH?? I'm going:wacko: . So how do we know whats what? So far her related article deals with Pandas,TC and SC. Are they going to add Lyme to that mix so we can compare? I mean Fig 3 they ask us to look at to see where our numbers fall- it doesn't include Lyme currently so Im guessing currently the numbers are as the article says and in the future they may come up with a Lyme profile in there.....??

[norcalmom]

I'm not sure it matters. Infection. Strep, Lyme, RF, causing this rouge antibody that wreaks havoc even after the infection has been cleared.

 

I'm assuming that Lyme is same as strep- the conditions exists after the infection is gone. Creating autoimmune condition after an infection.

 

It matters if you think you still have an infection, the c test may lead you to make sure there are no active infections, but that is separate from pandas(or whatever they decide to call it).

Infection triggered anti-neuronal response ITAR or disorder..ITAD. I wish they would call it something like that.