This is disappointing . . . .

[MomWithOCDSon]

I don't understand. I know our accounts along these lines are "anecdotal," but that's only because nobody's picked up the ball to study longer-term abx use in PANDAS yet. But why must they continue to bash it as an option?

 

PANDAS Treatment - NIMH

 

Some advocate antibiotic treatment for children who show neuropsychiatric sequelae of streptococcal infection, noting that PANDAS can have a relapsing-remitting course in which throat cultures at the beginning of a symptom relapse will be positive for Streptococcus.

 

The NIMH recommends antibiotics only for treatment of acute streptococcal infections as diagnosed by a positive throat culture or rapid streptococcal test, adding that prophylactic antibiotics in PANDAS subgroups have not been successful in treating neuropsychiatric symptoms.

Edited December 23, 2011 by MomWithOCDSon

[LaurenK]

Perhaps they have information on long term cases where antibiotic use did more harm than good?

[MomWithOCDSon]

Perhaps they have information on long term cases where antibiotic use did more harm than good?

 

Not where PANDAS is concerned, or rheumatic fever, for that matter. On the contrary with respect to the latter. And some doctors in practice consider PANDAS to constitute the "brain form" of rheumatic fever.

[LNN]

Perhaps I'm too jaded after all this time. Screams of politics and pharmaceutical lobbying to me. It is ironic and two faced that they'd print this yet fund research studies by Swedo and Murphy that suggest abx can be successful in treating neuropsych issues in the right sub-set of kids.

 

Guess you've just identified a goal for 2012 - wouldn't it be great for Vickie's '12 end of year video to flash "NIMH supports antibiotic treatment for PANDAS" ? Seems there's still work to be done.

[bigmighty]

Huh? We just finished the NIH IVIG clinical trial. They recommended remaining on antibiotics until age 18 - possibly 21. They also strongly cautioned against SSRI medications.

[MomWithOCDSon]

Perhaps I'm too jaded after all this time. Screams of politics and pharmaceutical lobbying to me.

 

Get out of my head, Laura!

 

My friends don't refer to me as "Ms. Oliver Stone" for no reason!

[PowPow]

Huh? We just finished the NIH IVIG clinical trial. They recommended remaining on antibiotics until age 18 - possibly 21. They also strongly cautioned against SSRI medications.

 

 

Awesome!! Thanks for chiming in -- now, if that could be public knowledge Long -term antibiotics really do not seem to help my kids a ton, but they are so helpful to so many people on this forum.

[LNN]

Perhaps I'm too jaded after all this time. Screams of politics and pharmaceutical lobbying to me.

 

Get out of my head, Laura!

 

My friends don't refer to me as "Ms. Oliver Stone" for no reason!

Oh, you'd have a blast in lyme land! More conspiracies and back room politics than Oliver could ever dream up!

 

You are probably like my DH, who watches news shows with the opposite views of his own, just to get riled up. Me, I prefer curling up with a book on heterozygous DNA polymorphisms Is Santa bringing you Yasko's book?

[MomWithOCDSon]

Is Santa bringing you Yasko's book?

 

I sure hope so! It was on my list. I've tried to be good this year, truly I have! It's just that sometimes my truer nature gets the better of me!

[MomWithOCDSon]

Huh? We just finished the NIH IVIG clinical trial. They recommended remaining on antibiotics until age 18 - possibly 21. They also strongly cautioned against SSRI medications.

 

Well then, maybe the right hand and the left hand need to get together and put out some consistent press on the topic! Or maybe they're separating the IVIG trial patients from the general PANDAS population on the basis that since IVIG is supposed to "reset" one's immune system, it needs atypical infection-fighting support for an extended period going forward?

 

I'm going to have a little more time on my hands over the holidays . . . I feel a letter-writing campaign coming on . . . Anyone care to join me?

[thereishope]

.

Edited September 30, 2019 by Vickie

[LaurenK]

Well, certain antibiotics provide neurprotection and the NIH itself has done studies to show this.

 

That sentence can/will confuse doctors. In our case, we do not use prophylactic antibiotics to treat the neuropsychiatric symptoms. We use them to try to ward off another strep infection as the strep infection is what will insight the neuropsychiatic symptoms.

 

 

Yes I agree. However, if antibiotics provide neuro protection, wouldn't it be better to find a drug that does the same thing and save the gut flora?

[MomWithOCDSon]

Yes I agree. However, if antibiotics provide neuro protection, wouldn't it be better to find a drug that does the same thing and save the gut flora?

 

IMHO, gut flora can be repopulated and supported, but ALL medications and/or supplements have potential side effects or interactions.

 

The danger in not fully recognizing the potential contribution made by abx when it comes to PANDAS is that the neurological issues tend to alternatively get met with psychiatric meds, treating the resulting symptomology of the illness but not the illness itself. And all too frequently, the psych meds don't work anyway when abx are needed; our family knows that from personal experience.

 

Furthermore, the long-term impacts of psych meds on our kids remain to be fully understood, while long-term abx have been utilized to combat illnesses such as rheumatic fever, tuberculosis and malaria for decades.

 

The frequent and/or prolonged use of abx have been vilified for helping create resistant strains of bacteria, but this is not unlike the argument over vaccinations and herd immunity; should our kids suffer so that the herd has less chance for being struck by resistant microbes?

[LaurenK]

Yes I agree. However, if antibiotics provide neuro protection, wouldn't it be better to find a drug that does the same thing and save the gut flora?

 

IMHO, gut flora can be repopulated and supported, but ALL medications and/or supplements have potential side effects or interactions.

 

The danger in not fully recognizing the potential contribution made by abx when it comes to PANDAS is that the neurological issues tend to alternatively get met with psychiatric meds, treating the resulting symptomology of the illness but not the illness itself. And all too frequently, the psych meds don't work anyway when abx are needed; our family knows that from personal experience.

 

Furthermore, the long-term impacts of psych meds on our kids remain to be fully understood, while long-term abx have been utilized to combat illnesses such as rheumatic fever, tuberculosis and malaria for decades.

 

The frequent and/or prolonged use of abx have been vilified for helping create resistant strains of bacteria, but this is not unlike the argument over vaccinations and herd immunity; should our kids suffer so that the herd has less chance for being struck by resistant microbes?

 

 

Maybe gut flora can be repopulated, but not the mutated genes that don't develop correctly due to the lack of beneficial flora.

Have you read this article at all? http://www.foodconsumer.org/newsite/Nutrition/Supplements/probiotics_1205110845.html

Antibiotics scare me to death for my son!

 

Gene Expression: As noted above, researchers also discovered that the absence or presence of gut microorganisms during infancy permanently alters gene expression.

 

Through gene profiling, they were able to discern that absence of gut bacteria altered genes and signaling pathways involved in learning, memory, and motor control. This suggests that gut bacteria are closely tied to early brain development and subsequent behavior. These behavioral changes could be reversed as long as the mice were exposed to normal microorganisms early in life. But once the germ-free mice had reached adulthood, colonizing them with bacteria did not influence their behavior.

[MomWithOCDSon]

Maybe gut flora can be repopulated, but not the mutated genes that don't develop correctly due to the lack of beneficial flora.

Have you read this article at all? http://www.foodconsumer.org/newsite/Nutrition/Supplements/probiotics_1205110845.html

Antibiotics scare me to death for my son!

 

Gene Expression: As noted above, researchers also discovered that the absence or presence of gut microorganisms during infancy permanently alters gene expression.

 

Through gene profiling, they were able to discern that absence of gut bacteria altered genes and signaling pathways involved in learning, memory, and motor control. This suggests that gut bacteria are closely tied to early brain development and subsequent behavior. These behavioral changes could be reversed as long as the mice were exposed to normal microorganisms early in life. But once the germ-free mice had reached adulthood, colonizing them with bacteria did not influence their behavior.

 

I'll read that article, for sure. I agree that gut flora are important, and I've seen some studies (not sure if they're the same ones) pertaining to mice, gut flora and mental function. I know the gut and the brain, along with various neurotransmitters (histamine, serotonin, etc.) are connected, and I'm not advocating sacrificing one in favor of the other.

 

But the issue remains, which do you fear less? Abx or psych meds? And which have the better chance of getting at the ROOT of the problem and not just masking or quelling the resulting behaviors?

 

Don't get me wrong, here. I'm in favor of pretty much anything and everything that improves the quality of my son's life, both now and for the long term, so we've thrown everything at this PANDAS thing that's demonstrated efficacy for him, including abx, low-dose SSRI's, glutamate modulating drugs and supplements, probiotics and anti-inflammatories. But when things got REALLY bad for DS, the only thing that touched it were antibiotics. And while taking them steadily for 2 years, he improved more and more; earlier on, when we removed them or even reduced them, he would regress again behaviorally. And my DS is not the only instance of that phenomenon; there are a number of families here, as well as the now well-known Sammy Maloney, who've experienced the same thing. Furthermore, studies at Yale, Johns Hopkins, SFU, etc. continue to point to the glutamate-modulating and anti-inflammatory benefits of certain antibiotics and thus their positive impacts on conditions such as ALS, Alzheimer's, MS, OCD and autism. So it scares and frustrates me to see this sort of stuff in the press; it's antiquated and not reflective of the reality on the ground.

 

Now my DS is off the abx, and has been off for only about a week. We'll see. But if he should regress dramatically again, I won't go running to the doctor for a higher dose of Zoloft, or fresh scrips for risperadol or seroquel. I'll be after another abx prescription, faster than you can say "Jack Rabbit!"