Antibiotics

[michiganpandas]

this is once again where my ignorance shows up.....if strep is hiding in the body then wouldn't long term antibiotics kill it?....why do the pandas symptoms show up once the abx. are stopped? this is what i don't get.....do the antibiotics help with something else besides the strep itself?

[dcmom]

michigan pandas-

 

Well- I don't know.

 

I don't know if we have an increase in symptoms off of antibiotics, I haven't tried yet. I would think there would be no difference.

If they go downhill off of antibiotics, I might consider the possibility of a long term infection OR the fact that some antibiotics are known to have immune modulating properties.

Antibiotics also no longer prevents my kids from having flare-ups- but does it make them less severe? I do not know.

 

I am just thinking- how long can I continue daily antibiotics on two kids, without knowing they are needed, and doing the job they are needed for.

 

I guess this is a philosophical/ conscience crisis, in a way. Am I trading in a problem now, for an unknown future problem?

[MomWithOCDSon]

this is once again where my ignorance shows up.....if strep is hiding in the body then wouldn't long term antibiotics kill it?....why do the pandas symptoms show up once the abx. are stopped? this is what i don't get.....do the antibiotics help with something else besides the strep itself?

 

I don't think that's ignorance . . . it's the same question many of us have been asking ourselves, our doctors, and the researchers for years now. There are lots of theories, but no one seems to know the final "answers," and it may very well be that there is no one answer appropriate to each situation. The meds, the patient, etc., all those variables could result in a different answer for each person.

 

You ask, if the strep is hiding, wouldn't long-term antibiotics kill it? Perhaps, ordinarily. But there might be a few instances in which that doesn't happen effectively: 1) it is a strain of strep that is resistent to the particular antibiotic that's being taken, and/or 2) the strep has gone "intracellular" (there've been a few discussions here on the forum along these lines -- you can search the term) and is therefore much harder to eradicate, and/or 3) the strep or other pathogen is being protected by a "biofilm" which renders it more impervious to the antibiotics (another topic of discussion here on the forum, with a very recent posting by LLM with a long, detailed paper on the topic).

 

You also ask if the antibiotic is perhaps helping with something else besides the strep itself. In our opinion and experience, the answer is "yes," though it isn't necessarily the case for everyone, perhaps. Different classes of antibiotics are thought to have some additional properties that may help our kids. For example, macrolides (azith is one of this class) are thought to have anti-inflammatory properties. Meanwhile, beta-lactam antibiotics (Augmentin is in this class) are thought to have glutamate-modulating properties. Both anecdotally and through some studies (of kids with OCD), inhibiting inflammation and glutamatergic activity seems to assist kids behaviorally.

 

My DS14 has been taking Augmentin XR for nearly two years now. We've tried taking him off and even decreasing the dosage at least a half-dozen times over the last two years. His response, however, has been like clockwork; we begin to see some increased anxiety and hints of returning OCD behaviors within 4 or 5 days, and by Day 8 off the abx, the decompensation is fully palpable. It's happened over and over again, and it seems unlikely that it's due to re-exposure or some other singular strep-related event (he's asymptomatic, so throat cultures always come back negative -- it's only titer tests that reveal an atypical reaction to strep. Is he contending with a lot of intracellular strep or tough biofilms because he went for so many years without treatment, so he needs the abx longer and more continually to meet that strep head-on? Or is he benefitting from the glutamatergic qualities of the abx? Or is it a combination of both?

 

We don't know. And we will probably try reducing the abx again ourselves this summer, once he's settled into his summer routine and we're fairly certain we can tell the difference between his "standard anxiety" over starting something new (like summer school) and any increase in his behaviors not attributable to challenging external circumstances.

 

So, in short, I wish I knew. Or I wish SOMEBODY knew for sure. Meanwhile, we feel compelled to follow our guts, our experience, and our opportunity for feedback and help!

[beeskneesmommy]

It's interesting that so many docs insist on stating (at least on paper and websites) that abx do not effect PANDAS symptoms directly, although I truly have my suspicions! Sometimes I think that this is a blanket statement in order to make sure that people do not utilize abx for just that - to try to manage the symptoms directly. Rather, the general verbage seems to be that it manages the Strep or other bacteria, or "blocks" Strep from penetrating, thus giving the patient the ability to recover from the previous Strep exacerbation. SO, how is it explained that Cefdinir is utilized because it crosses the blood brain barrier more easily. If it isn't effecting the brain directly, then why is it chosen due to these specific properties? All I DO know is that certain abx litereally attack the PANDAS symptoms in my child and that I can see the wave of symptomology recede quickly and effectively with we use them.

[momcap]

I have despaired over this question many nights. I HATE that my kid is on long term antibiotics. I'm the kind of person who doesn't even take a tylenol. I rarely go to the doctor. (I even had my babies at home.) I hate the way new doctors raise their eyebrows, or make little faces when they hear he's on prophylactic abx. And I hate that the abx are not a cure, but we can't stop them because they are helping.

 

Every time we try to stop DS7's antibiotic he slides further away from us, almost overnight. Literally within 24 hours he turns into a raging monster. His school principal describes our latest attempt to stop antibiotics in April, saying "he appeared agitated for no apparent reason", he was an "extremely different boy than the one who had been at school just two days previously", and the difference is "unbelievable". The worst part is that months after starting the antibiotics back up again we are no where near back to the level of progress we had made.

 

I think this is because DS6 is a strep carrier. We have nearly constant strep infections going around between our kids and the kids I babysit. Last week DS4 had a strep throat infection. The week before a girl I babysit had scarlet fever. Two weeks before that my strep carrier flared and got a full-blown strep infection. It has been non-stop strep since 3 years ago when my youngest 2 boys got scarlet fever. We can't get away from this strep!! I've tried abx, naturals, disinfecting everything in sight, changing toothbrushes and toothpaste weekly, etc. What else can I do?!

 

Another strange thing - prophylactic abx help to some degree, but high dose abx make him 100x worse. When he was on augmentin we almost had to hospitalize him, and biaxin was barely any better.

[AmySLP]

michigan pandas-

 

Well- I don't know.

 

I don't know if we have an increase in symptoms off of antibiotics, I haven't tried yet. I would think there would be no difference.

If they go downhill off of antibiotics, I might consider the possibility of a long term infection OR the fact that some antibiotics are known to have immune modulating properties.

Antibiotics also no longer prevents my kids from having flare-ups- but does it make them less severe? I do not know.

 

I am just thinking- how long can I continue daily antibiotics on two kids, without knowing they are needed, and doing the job they are needed for.

 

I guess this is a philosophical/ conscience crisis, in a way. Am I trading in a problem now, for an unknown future problem?

 

This is exactly my problem! ALways worried if the benefit outweighs the risk of the ABX in the long term! HOwever, we have tried several times to take her off-

Diagnosed PANDAS officially in April 2009 after 6-7 months of strep where we went back and forth on ammox/augmentin every other month until finally a covering pediatrician said that that had clearly been a failure and put her on Clindamycin-her symptoms began to resolve and were essentially gone for nearly 10 months, with mild flares with viruses

May 2010- acquired strep-choreiform movements appear suddenly and she goes on Zithromaz-no real improvement until she goes back on clindamycin. We left her on ABX from last summer to a point this Feb. where I was traveling frequently and honestly my husband was not real good about giving the ABX. I thought it might be a chance to take a break, but the symptoms returned as always, and as always with new behaviors (in her case movements)

We just had strep in our house (myself, my husband, my 4 yr old) and my daughter seems almost as bad as she was in 2008/2009 when this all started. I'm going to cal lthe doctor today b/c I think she needs to try CLindamycin again and see is we can wipe this out. I wonder if strep in hiding somewhere in her body that we are just not irradicating it with the Augmentin ES.

[AmySLP]

I have despaired over this question many nights. I HATE that my kid is on long term antibiotics. I'm the kind of person who doesn't even take a tylenol. I rarely go to the doctor. (I even had my babies at home.) I hate the way new doctors raise their eyebrows, or make little faces when they hear he's on prophylactic abx. And I hate that the abx are not a cure, but we can't stop them because they are helping.

 

Every time we try to stop DS7's antibiotic he slides further away from us, almost overnight. Literally within 24 hours he turns into a raging monster. His school principal describes our latest attempt to stop antibiotics in April, saying "he appeared agitated for no apparent reason", he was an "extremely different boy than the one who had been at school just two days previously", and the difference is "unbelievable". The worst part is that months after starting the antibiotics back up again we are no where near back to the level of progress we had made.

 

I think this is because DS6 is a strep carrier. We have nearly constant strep infections going around between our kids and the kids I babysit. Last week DS4 had a strep throat infection. The week before a girl I babysit had scarlet fever. Two weeks before that my strep carrier flared and got a full-blown strep infection. It has been non-stop strep since 3 years ago when my youngest 2 boys got scarlet fever. We can't get away from this strep!! I've tried abx, naturals, disinfecting everything in sight, changing toothbrushes and toothpaste weekly, etc. What else can I do?!

 

Another strange thing - prophylactic abx help to some degree, but high dose abx make him 100x worse. When he was on augmentin we almost had to hospitalize him, and biaxin was barely any better.

 

Just wanted to add that I feel the same way when I tell docs that we see about the prophylaxis-they usually just glare and do not offer an opinion, but there face shows what they really want to say. Our pediatrician is wonderful, always assuring me that there are kids with other disorders (Cystic Fibrosis etc.) who take them for years and no one questions it. HE streses that this is the brain we are trying to protect here. My new thing with doctors (in fact we are seeing an endocrinologist with our daughter in Tues) is that PANDAS is similiar, if not on a spectrum with SYdenham's Chorea, which it is widely recognized that a prophylaxis ABX is needed. It seems to make them more understanding everytime.

[beeskneesmommy]

Yes, I get the same thing with Peds, especially. They purse their arrogant lips and I feel irritated, but I never address it because they don't understand PANDAS and it will just end up making me upset. I had one tell me that it was impossible for my son to have PANDAS anymore because his tonsils were removed. I tried to explain the autoimmune response being in place and she looked at me with disdain. Don't they teach more complex mechanisms like autoimmune d/o in med school?

 

**RE: HIGH DOSES OF ABX MAKING IT WORSE: I cannot remember which thread, but I read from another parent on the Site that a kiddo was allergic to Amox. (Augmentin is Amox. with an acid booster in it). I am by no means knowledgeable about this, but I thought it was worth mentioning

[PhillyPA]

DS 9 has been off antibiotics for about three weeks. I am taking DS7 off of antibiotics in mid July. DS 7 is getting a T&A next week. I am going to keep him on the antibiotics for a couple of weeks after the procedure. He is also getting iv antibiotics during the surgery.

 

I have been warned by my kids pandas specialist not to do this...but I am going to do it anyway. DS9 has been great since being off of the antibiotic. No flares. No problems. No lingering infections, I am sure of that.

 

Freedom from these antibiotics will soon be mine!

[beeskneesmommy]

Philly, your kiddo will likely be prescribed Cefdinir for 10 days post surgery. Just sharing - my son fell apart d/t lack of abx prior to and post surgery. If I were to do it again, I would insist upon hefty abx for at least 6 weeks post surgery. The Strep that was hiding on the tonsils colonized and hit my son's blood stream. Our major episode happened post surgery.

[airial95]

this is once again where my ignorance shows up.....if strep is hiding in the body then wouldn't long term antibiotics kill it?....why do the pandas symptoms show up once the abx. are stopped? this is what i don't get.....do the antibiotics help with something else besides the strep itself?

 

This has been our experience: impetigo may not clear on an oral antibiotic alone, it may also require a topical to completely clear. We've gotten impetigo several times while on full strengh abx (eventhough his immune workups say that he has FANTASTIC immunity to skin strep - REALLY???) Kids can flare with impetigo, and that's actually what started us down the PANDAS spiral road. You have to keep applying the topical for a few days even after the infection looks cleared. I think one of the reasons we had a recurring bout with it recently is because we weren't dilligent about continuing after the rash was gone. All of our impetigo infections were also very localized - one pimple - two at most. Initially, they all looked like a mosquito bite (then after a couple of hours the crust, etc...forms) so I think that in some cases it may be missed if you aren't looking out for it. (Which we ALWAYS are now!)

 

The other area we had strep found is in the nostrils. Again, he caught it here while on full strength oral abx. The pediatrician said that the oral wouldn't completely clear an infection in the nasal cavity, and again, we had to use a topical abx up the nose. When we were first dx, our pediatrician also had us do this step on the whole family for 10 days just to erradicate anything that wouldn't come up on a throat culture. We've now been advised to immediately start that process when we see a significant flare of symptoms if he's currently on abx (which he's not).

[JJMom39]

this is once again where my ignorance shows up.....if strep is hiding in the body then wouldn't long term antibiotics kill it?....why do the pandas symptoms show up once the abx. are stopped? this is what i don't get.....do the antibiotics help with something else besides the strep itself?

I also wonder about this daily. Recently my ds8 finished a steroid burst and we saw no improvement in his lingering symptom. (His stubborn symptom is ADD-like issues.) Two or so weeks after finishing the burst he started to show increased anxiety, always our first signal that something is going wrong, and increased anger/meltdowns. I had an Rx for Augmentin ES that I had never filled so thought I would stop the azith for 10 days and add the Augmentin just in case a burst of a new abx might make an impact. That was a mistake. Anxiety and anger/defiance really ramped up within a few days. I kept him on it for a few more days and then switched back to the azith b/c it was too scary to see him falling apart again. We did 5 days of azith and he was fine. He is now back to a good place and back on his prophylactic dose. It seems for now azith is the thing he needs. Is it b/c it is doing a better job managing the bacteria, or is it the anti-inflammatory properties? I don't know.

What is it going to take to eradicate strep from our kids for good???????

[sptcmom]

We need t keep in mind as we all already know that PANDAS is first and foremost an immune system disorder/autoimmune. some points to consider

Strep bacteria are just ONE of the triggers. I've seen symptoms triggered by flu mist, viruses, exposure to strep in the kid sitting next to the PANDAS child in school etc.

 

Its very rare to find only strep as the culprit. Most children I see and treat have multiple underlying infections like intestinal parasites, yeast, heavy metal toxicity, ASD, mycoplasma, HHV6, Lyme etc. Multiple neurotoxity in a nutshell.

 

When organisms/strep go intracellular, especially during steroid bursts, they can stay there or migrate out when they feel safer. These ones usually are eventually killed with meds circulatiing and killer T cells. Unfortunately that tiny track/footprint left in the cell is enough for a disregulated immune system to trigger autoantibodies and the symptoms keep going until all remnants of the organisms are cleared which can take one heck of a long time.

 

In my experience, its very important to incorporate antibiotics that cross the BBB and to include nutritional support that keep cells hydrated, energized and osmotically sound to allow ABX to enter the cells.

 

Adequate detox and drainage is crucial to prevent intracellular channels being choked up.

 

Many children are internally so choked up with multiple PANDAs Rx regimens- steroids, abx, PEX, IVIG, Psych meds etc- that higher and higher doses are given with minimal progress.

 

I find ART to be THE best way to determine out of the several supplements available for each organ system which one is suitable and needed for a particular child's individual biochemistry. Once thats figured out then magical things can happen- personal and professional experience.

 

Parents have posted about alternative modalities like TFT for emotional rebalancing and those also help immensely.

 

Along with ABX, its crucially imp to start addressing cofactors like KPU/HPU (common in ASD), metal detox etc and determine the order in which to do so. I've seen disasterous results when well meaning DAN docs atart with killing yeast first and thus releasing all the bound metals into the blood stream and one can see a huge regression in the child as part of the inevitable herx.

 

If all of the above steps have been followed and the child is stable, it is fine to stop the ABX and give the liver and kidneys a break.

Concurrently, therapy to turn off the autoimmune switch is highly recommended. This is done homeopathically with German biological remedies in my experience.Reeducating the immune system with blueprints of what healthy organs look like is immensely helpful in reducing flare up severity.

 

This reduces the flare ups seen as a sliding scale until they are minimal/none after which you continue nutritional support for additional 6 months and treat illnesses as they come.

 

For those who are new to me- DS diagnosed with ASD at 22 mos, Aspergers at 33 months, PANDAS at 8 yrs,IVIGwith Dr K and ABX with Dr T, Bartonella at 8.5 is now free of all Asperger symtoms, all OCD, all sleep issues, all seperation anxiety, all GI issues, normal organic diet now ( no more GFCF needed), off ABX since March. We've had PANDAS flareups decline steadily with two exposures since february- lasted 2 days or less and we treated those symptomatically.

 

We have also started immune system reeducation and turn off the autoimmune switch protocols since March. We saw a 50% reduction in seasonal allergy symptoms for the first time and as I said the autoimmune flareup has been less and less.

 

we will continue herbal, homeopathic and nutritonal support for additional 1 year I think.

We also found that addressing the EMF issue helped IMMENSELY with motor tics.

 

I have address some more heavy metal detox and further emotional restablizing therapy (MFT or TFT works so well).

Sorry about typos if any.

 

Jodie

Edited June 18, 2011 by sptcmom