Neg/Pos cultures

[porkchop]

Hi,

 

My son was recently diagnosed with pandas after 2 yrs. Our neurologist recently ordered a strep culture and when it came back we were shocked..it was POSITIVE. My son had no symptoms at all. They started him on antibiotics and we did round 1 of ivig and solomedral(4/23/12). He was fine, then this past Sunday out of nowhere he starts to show symptoms of an episode.. extreme tiredness, irritable, just sorta out of it. We were scheduled to go in for round 2 of ivig on Monday(5/21?12) and when we arrived it was clear to me that he was def. in an episode. The nuero ordered a strep culture and it came back today neg. How can he have no symptoms and be postive, and now he has symptoms and he is neg? We did aso titers a few months back last time when he was sick in Feb. and his titers were 1700, nuerologist said he has never seen anyone with titers that high before. He has been on amox. prophalacticy, and now the neuro wants him on keflex, but the ID said there has never been a strep bacteria that the amox. has not been able to kill. The neuro. said he will look for articles to send to the ID about prophylactic meds other than amox. The ID said my son is basically being treated as if he has rhumatic fever, but even with rhumatic fever..that does not cause all of these ocd, anxiety, panicky behaviours does it?

[MomWithOCDSon]

Well, firstly, keeping in mind I'm not a medical professional, I would be highly skeptical of the statement that there's "never been a strep that amoxicillin failed to kill." Frankly, that sounds ridiculous to me; and there're certainly many, many anecdotal reports here and elsewhere of cases of strep that "broke through" amoxicillin! In fact, amoxicillin is NOT an antibiotic that has a particularly strong history in the PANDAS world, maybe for that reason.

 

Secondly, there's been at least one doctor of a child on this forum who succinctly identified PANDAS as "rheumatic fever of the brain," so the ID isn't entirely off-base. If the auto-immune reaction to strep is such that it threatens the health of a vital organ (the heart in rheumatic fever, the brain in PANDAS), then it needs to be treated aggressively. The mistake the ID is making, and that is unfortuneately made in our world all the time, is in thinking that a threat to the heart warrants this aggressive medical care, but the threat to the brain is somehow only a "perceived" threat rather than a valid one that requires equally aggressive treatment.

 

Thirdly, many of us have seen our kids begin a fresh "episode" or exacerbation, even in the absence of a positive culture. This latest culture your DS had may not have been done correctly and therefore rendered a false negative. Or the strep may be somewhere else in his body rather than his throat/tonsils (gut, for instance, or sinuses). Or he may have been "exposed" to strep by someone else that, while the prophylactic abx prevented him from actively "catching" it, his immune system still mounted a response to the perceived threat. Or it may not have been strep that set his immune system off at a run again this time; unfortunately, once triggered, some kids react to other microbes and interlopers, like cold viruses or environmental allergens. It wouldn't have to be strep this time around, necessarily.

 

Finally, I'm not sure prophylactic doses are what your DS needs. If his titers were that high to begin with, and he's in an exacerbation now, he may need a treatment dose. The role of abx in PANDAS when there isn't proof of an active infection remains, unfortunately, somewhat controversial; some doctors have no issue with ordering treatment doses based on behavioral symptoms alone, but others do.

[porkchop]

Hi,

 

I dont think the ID is on board with the whole "pandas" diagnosis. He has been somewhat skeptical of this since day one. However, he had always seen us when my son was

"normal" but he did get to see him on Wednesday and his response was.. he never really understood what I was talking about, but now that he actually sees it that its "remarkable" to see the difference. What is a "treatment dose" compared to prophylatic? It doesnt seem any diff to me. He was on 1 teaspoon 2x a day when he tested postive, and its now the same dose.

[beeskneesmommy]

I feel disturbed by your post. Indeed, it is actually well known in the medical community that Amox, although the 1st line of attack, often fails or loses its effectiveness toward Strep. The statement made is simply absurd! Here are just 2 random articles to this effect that came up from a simple google. I remember having to swich away from Amox when my son 1st showed symptoms, 3 years ago, and even then the Ped agreed that moving on to a different abx would be more effective.

 

http://www.urmc.rochester.edu/news/story/index.cfm?id=981

 

http://www.sciencedaily.com/videos/2006/1007-sick_of_strep_throat.htm

 

In addition, although a swab may return neg, this does not mean, especially with the titers that your kiddo had, that the Strep is out of the system. My son exhibits a PANDAS flare and no longer has Strep + on a swab since he had a T&A. However, It is clearly evident in labwork that his titers rise with his flares and decrease or even return to norm levels during decreased or asymptomatic periods. There is so much more to say, but it would take all night. I encourage you to add a PANDAS specialist to your team. Perhaps the Neuro and a PANDAS-literate doc could collaborate??

 

Best to you, Kath

[MomWithOCDSon]

Hi,

 

I dont think the ID is on board with the whole "pandas" diagnosis. He has been somewhat skeptical of this since day one. However, he had always seen us when my son was

"normal" but he did get to see him on Wednesday and his response was.. he never really understood what I was talking about, but now that he actually sees it that its "remarkable" to see the difference. What is a "treatment dose" compared to prophylatic? It doesnt seem any diff to me. He was on 1 teaspoon 2x a day when he tested postive, and its now the same dose.

 

I don't know your DS's age and weight, and even if I did, I'm not qualified to speak to abx dosage. But I was going off your terminology, saying that your DS was on amoxicillin "prophylactically."

 

Many of us have done treatment doses (meaning full doses for a given age and weight) for 30+ days, followed by lower, prophylactic doses for an extended period to help protect them as they return to school, activities, etc. Amox's half-life is so short, though, that it doesn't make for a very good prophylactic. Zith, on the other hand, has an almost 3-day half-life, so many families use it as a prophylactic successfully, even just dosing every 2 or 3 days, sometimes even less.

 

 

*Edited for typos due to poor IPad skills!

Edited May 27, 2012 by MomWithOCDSon

[cobbiemommy]

Amoxicillin is not the end-all be-all some docs make it out to be! There is a reason that stronger drugs have been developed and sometimes those are used on strep patients. My son always swabbed negative for strep, but strep left untreated or undertreated goes intracellular and can travel through the blood stream to a new location. My son's ended up inside the tissues of his nose and he has been treated with antibiotics ever since. His OCD is finally starting to lose it's grip and we are waiting our turn for IVIg.

 

Our ID doc was horrible and a non-believer. Run, I am telling you. Run!

 

Have your child's streptococcal antibodies checked. If he has no immunity, that is why you keep getting strep. My son contracted strep while on three strong antibiotics and one was very broad spectrum.

 

Cobbie