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jeremyssmith

Why not start antibiotics anyway

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I have a 14yo (prepubescent) son who overnight developed severe tics and Coprolalia along with other symptoms aligned with PANDAS/PANS. He has been on ADHD meds for over 10 years for Sensory Processing disorder (SPD)- so the it's hard to say exactly when the symptoms truly started. He had a history of severe ear infections, when much younger and Rheumatic fever at age 6. 

His initial diagnosis following the rapid onset of tics was maybe Tourettes, so I started reading everything I could about Tourettes and kept coming back to PANDAS because my wife had strep-like symptoms the day prior to the most sever tics starting. After all the reading I did on this forum I took him to the Dr on friday (2 weeks after the onset of symptoms) for a strep culture and blood test. I'm assuming the strep culture came back negative (because I never got a phone call)- and I don't expect to get the Strip titer results back for another few days. [All this complicated by being military stationed in Japan.. and many labs have to get sent back to the US for analysis]

I'm fairly sure the Dr has little knowledge of PANDAS/PANS because she provided me with the printout from NIMH (which is the third from the top if you goggle PANDAS disease)... which unfortunately clearly state "without a positive strep culture giving antibiotics is not recommended." If you read all the testimonials on this page, and watch the videos with Dr Swedo - you get quite a different story.. 

So, I'm wondering- why not just prescribe Augmentin right away.. what could it hurt? I know there are side effects to antibiotics, and if we encounter those we can switch to something else.. but I feel like we're waiting days for blood tests to come back- that still are going to be inconclusive- because she's not going to use antibiotics unless there is a positive culture because that's what the NIMH paperwork suggests. Does anyone know of any clear medical guidance that would direct the use of antibiotics?

Edited by jeremyssmith

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I'm going to start this post with IMHO.

PANDAS is pretty much related to strep. But not all kids with strep get PANDAS. Antibiotics can help in the short term, but damage has already been done. The germ has jumped the blood/brain barrier. Once that has happened, antibiotics can't get rid of it. Of course, getting it out of the rest of body will help, but the problem is there to stay.

The best thing to do, IMHO, is to rebuild and reorganize the immune system. Help the body detox with limiting foods and taking salt baths. But probiotics, or prebiotics, or psychobiotics can help rebuild the stomach and provide enzymes to communicate with the brain. A healthy gut will protect the brain much better, and your efforts will be more rewarding in that direction. Killing the germ can be helpful, but it comes back.

Building a healthy blood/brain barrier is the best defense. (yeah, I'm pro-wall.) Anyway antibiotics can give you a break, but they don't solve the problem.  And, if some on this site are to be believed, antibiotics can make the problem worse.

My daughter, (11) takes Pro-Kids, Culturelle Packets for kids, and CBD oil. She wants to go back to school, goes outside to play on her own for short periods of time, goes to more public places.  I adopted her at birth and she was a drug baby, she has SPD as well. Still has some panic attacks in math, but things are really looking up.

Edited by lordchallen

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@lordchallen- Thank you for the reply.

Here's an update. We did get Augmentin prescribed and 36hrs later I felt like I was exorcising a demon. The tics, the coprolalia was so severe he couldn't even sit still. I gave him melatonin and let him sleep it off. The next day was much better, but not back to pre-symptomatic "normal". We're now 96hrs since starting the abx, and he's been about the same since the morning after the huge reaction.

I've researched herxheimer reaction- and that's about the only thing I think explains the drastic worsening of symptoms- and there are many articles that talk about the symptoms getting much worse before they get better- so we're hanging on.. I'll update again after a few more days- and at the end of the 14day abx.

My question to you @lordchallen and others in the know- specifically about the BBB. If you read about how METH effects the brain it is clear that METH crosses the BBB and that's what enables the high that the addict seeks.- So, if it's able to jump the BBB in an adult, what is it doing to the fetus BBB? I believe there is science to support that you can actually bridge the BBB in the fetus, making the child more susceptible to future infections.

So- with my son.. IF the BBB was compromised en utero, AND he has an bacteria has made it to the brain, then wouldn't the abx ALSO cross the BBB and attack the bacteria. Could that be the extreme reaction we saw immediately after starting the abx? Was the abx attacking the bacteria IN the brain- causing mass confusion?

You also mention that once the bacteria is in the brain you can't do anything about it- but what about long-term abx, and/or IVIg.. don't both of these ultimately attack the bacteria in the brain? 

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Jumping in with a different perspective.

Was your son vaccinated?

Vaccine adjuvants are designed to cross the BBB, specifically aluminium.  There was much discussion on this site that Pandas is a version of aluminum toxicity.  With vaccines, the aluminum is designed to hold onto the antigen and keep it in the body long term; thereby introducing antigens into the brain as well.  It is believed that detoxing from aluminum and mercury helps quiet the immune system.

We have tried selenium for mercury, malic acid for aluminum and other stuff as well.  She is probably not all clean, but definitely is aluminum sensitive- she cannot tolerate aluminum based deodorant.  She is currently using Diatomaceous earth for a slow detox for everything.   I think it is helping well.

I have learnt about vaccine reactions about seven years ago, and have not vaccinated my kids since.  I have 2 totally unvaccinated kids, and several partially vaccinated.  It is a CRIME what pharma is doing to our kids without knowing the long term effects.  I can honestly say, VACCINES ARE NOT WORTH IT!  Which parent would not nurse a child through a bad case of pertussins or measles, and even sweat the time through the a hospitalization for physical problems versus dealing with what we are dealing with here?!!!  Just venting my pain.  I wish I would have known about this issue many many years ago.

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@bws1565You bring an interesting perspective... not one I currently share- and don't really want to open up the passionate discussion of vacc/anti vacc on this forum, but I do think the points you present are worth evaluating. I *used* to be hard over on trusting the doctors to know what they are talking about, to now palcing more importance on educating yourself and being proactive in every decision- and vaccination is an important part of that discussion. Thank you for sharing.

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I have some insight on the abx, but also something to add about Vaccines (I promise I won’t go on too long). My advice is to never make any anti-vaccine comments to any conventional medical professionals. Once you do, they will stop listening to you.  My DS is currently receiving monthly IVIG, so for the time being we have an excuse not to vaccinate. It appears most PANDAS docs are anti-vaccine, but you may need to read between the lines. Even they don’t want the hassle of being labeled anti-vaccine.  

As for the abx...My DS is a severe PANDAS / PANS case.  He was prescribed a high dose of Augmentin in 2016 for 30 days.  We saw no results for the first 10 days...then on day 11 he began to rapidly improve.  By the end of the 30 days, he was 90% improved. He began to regress about 5 days after abx stopped.  MD would not prescribe that high dose again. Since, we have seen some improvements from abx, but never the same as that first time. I believe it was Dr. Frankovich from Stanford that said if abx are working, and they are stopped, it is very difficult to recapture the success.  

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@maryangelaThank you for your insight.. I totally understand your interpretation of the anti-vax position with doctors. My (uneduated) view of it is that the potential *good* part of not vaxinating was tainted by the high profile case that was proven to be false. With everything there has to be some middle ground.

Specifically, for my son- if the prenatal drug exposure opened the BBB.. then maybe that would be a case for CAREFUL vaccinations- because the "normal" biological response may not be strong enough in his case- which then brings into light many more questions... i.e. We are living in Japan- and so he also had to have Japan encephaltis vaccination prior to coming here.. The very little I have learned about PANS/PANDAS does talk about some relationships to encephalitis.. so then I wonder, could the vaccination have actually triggered something. My initial though was no, since he received the vax 4 years ago.. but from what I'm learning about triggering dormant bacteria.. it gives me pause.

To your point about the regression.. did you ever find a solution? Did you see a Herxheimer-like exponential worsening of symptoms 1 day in as well? I'm concerned that since the Dr was very reluctant to give abx.. it will be very hard to get her to continue anything without a compelling reason. I have been video-taping and documenting all his symptoms as anecdotal evidence.. but I don't like playing dr. - I rather they play dr, and let me be objective. 

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55 minutes ago, maryangela said:

I have some insight on the abx, but also something to add about Vaccines (I promise I won’t go on too long). My advice is to never make any anti-vaccine comments to any conventional medical professionals. Once you do, they will stop listening to you.  

You are correct with this observation.  I never mention my vaccine position to anyone.  Once, I have had a local medical center confront me about my not vaccinating, but they were very respectful of my decision to my surprise.

The only place where I adamantly refused to get a vaccine with my mouth wide open, was prenatally.  Otherwise I always say, "not at this time, thanks."

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@jeremyssmith  When DS received the 30 day Augmentin, he did not get worse before better.  Later that year a different MD gave him 14 days Penicillin for an ear infection.  His OCD and tics began improving after 3 days, but he regressed after abx stopped.  Again, he did not get worse first.  Was your son tested for Mycoplasma Pneumonia (blood test)?  In 2017 my DS responded well to Clarithomycin after Mycoplasma showed up on his bloodwork.  Apparently, Augmentin does not help Mycoplasma. 

The unfortunate reality is that until you find a PANS / PANDAS specialist, you will need to do your own research.  

My DS is also 14.  He was diagnosed with SPD as a baby.  Current PANDAS MD says the SPD and PANDAS are from the same cause.  

Our current solution is monthly IVIG.  He’s been having this for 15 months.  He fluctuates from 70-90% recovered.  MD is treating him for encephalitis.  It sounds like your DS may have encephalitis also, possibly triggered by the vaccine.  Not to get back into the vaccine issue, but even though the potential vaccine side effects are listed on a government website, most MDs are not trained to recognize or treat a vaccine side effect.  They are hyper-focused on the agenda of getting all kids vaccinated.  

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17 hours ago, jeremyssmith said:

@lordchallen- Thank you for the reply.

Here's an update. We did get Augmentin prescribed and 36hrs later I felt like I was exorcising a demon. The tics, the coprolalia was so severe he couldn't even sit still. I gave him melatonin and let him sleep it off. The next day was much better, but not back to pre-symptomatic "normal". We're now 96hrs since starting the abx, and he's been about the same since the morning after the huge reaction.

I've researched herxheimer reaction- and that's about the only thing I think explains the drastic worsening of symptoms- and there are many articles that talk about the symptoms getting much worse before they get better- so we're hanging on.. I'll update again after a few more days- and at the end of the 14day abx.

My question to you @lordchallen and others in the know- specifically about the BBB. If you read about how METH effects the brain it is clear that METH crosses the BBB and that's what enables the high that the addict seeks.- So, if it's able to jump the BBB in an adult, what is it doing to the fetus BBB? I believe there is science to support that you can actually bridge the BBB in the fetus, making the child more susceptible to future infections.

So- with my son.. IF the BBB was compromised en utero, AND he has an bacteria has made it to the brain, then wouldn't the abx ALSO cross the BBB and attack the bacteria. Could that be the extreme reaction we saw immediately after starting the abx? Was the abx attacking the bacteria IN the brain- causing mass confusion?

You also mention that once the bacteria is in the brain you can't do anything about it- but what about long-term abx, and/or IVIg.. don't both of these ultimately attack the bacteria in the brain? 

I read through some of the comments, Jeremy. Those of us "in the know" will pretty much say what you don't currently share an opinion about. Things like vaccines can be major triggers. It's about the immune system and the ability to detox. Pretty much comes down to that. Things like molds, metals, and germs can trigger reactions.

The antibiotics can make it worse because the immune system is a complex system of biological agents can be affected from the killing off a wide band of microbes. The whole thing comes down to the relationship between the stomach and the brain. Heal that relationship.

I'm not really strong with BBB science, but as I understand it, once the germ has jumped the fence, the immune system reacts to it, whether dead or alive. However, it cannot get rid of it, whether dead or alive, and that is the problem. The area becomes inflamed and that causes the problem. I have a sensitive fever monitor (thermometer) and while my daughter's forehead might be normal, the temples were always in fever or near fever temps (almost a year that way.) That has gone away and now it's usually the same as the forehead.

Everyone is different, so the set of remedies is usually unique. Supporting communication from the stomach to the brain can reduce anxiety. Assisting detox, by salt baths, avoiding milk products,  watching for triggers such as mold and metals.

The reason many people on here will claim vaccines are bad is they have the experience. Some bodies simply lack the ability to get of some toxins. It's not the germ, or denial that humans can normally detox this stuff, but if someone has a compromised immune system, they don't stand a chance. Like I said, even if, (maybe especially if) the germ is killed by the abx, the way the immune system reacts can be a disaster. That is one reason abx can make it worse. 

Some dude once said, "The germ is nothing, the terrain is everything." That is the case with this. The germ is just the trigger. The rest is body response, and just killing the germ doesn't mean that the body got rid of it. That can take much longer. Protecting against future triggers the key to happiness.

 

 

Edited by lordchallen

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@lordchallen  thank you- please don’t read anything into the fact that I don’t currently share the anti-vax opinion. It’s my own ignorance on the topic that drives my opinion. I am always open to new thoughts, and especially in uncharted areas like this. I appreciate your candid response - as I actively consider all possibilities. My stance on vaccinations at this point is not important because that’s in the past- my focus now is on the future and how to deal with that- and your advice has been very helpful. 

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And normally this is an uncomfortable subject.

For my part, understanding the nature of the immune system is how I beat this for my daughter. Understanding that something as innocent as a germ or vaccine can trigger this is part of the cure.

Thinking this is a germ you can fight will only magnify the problem. 

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