New Member - ABX working

[beckspanspandas]

Hi All - My five year old was recently diagnosed with PANS/PANDAS after a horrifying few weeks of symptoms that appeared overnight in her. We are in PA and saw several doctors to determine treatment recommendations and she is currently on Augmentin which has almost brought her completely back to herself. She has been on it for three weeks and the plan is to continue the Augmentin for three more weeks and then gradually start to taper her off the script to see if any of her symptoms start again or increase. I keep reading that children are on their antibiotics for longer periods of time. Is that the norm? I am terrified to start tapering her off her meds for fear all the symptoms will return. Are there a lot of children out there that simply need one course of antibiotics and they never see PANDAS/PANS return? Or is the norm to push to have them on the meds longer? Help needed for this mom that is new to all of this and looking for guidance. Thank you in advance!

[NYCMom]

I can only share our situation, but I'm pretty sure we're not unusual. You can see our course of treatment in my signature.

Our ds13 has been on and off abx for years. He is currently off and only has minor flares now, mostly tics and some mild adhd behaviour. We're pretty sure his flares are due to the canary in a coal mine reaction to others around him having bacterial OR viral infections. When he's ticcy I usually find out that one of his classmates has strep. It's mild enough that we have been choosing not to treat, rather than mess with his stomach. We stick to trying to keep his diet clean (low sugar, refined foods, gluten, etc.) and trying to keep him a daily regime of probiotics (klaire, kefir). That being said, he's a teenager now so his habits are somewhat out of our hands. We just keep talking to him about making good choices and taking care of himself.

There are a lot of different scenarios on this board. Some kids can't handle even mild exposure and flare really strongly when off abx. You have to be a good observer and gage your kid.

[beckspanspandas]

Thank you for your response. I appreciate any insight and help since the path isn't clear for any of this as you know. I'm glad to hear stories like your son that is almost 100% and hope his health continues. Since this is all still so new, I still just keep hoping for someone to say "yes, she is going to be fine" but I realize with this that is impossible. Thank you again!

[LNN]

I've been at this for many years, with two kids who are affected - here's my take on it-

 

You contract an infection and your immune system produces antibodies against that infection. So far so good. Then those immune cells migrate into your olfactory bulb (which may happen in all people because the sinuses are a first line of defense for keeping intruders out). But in Pans kids, those immune cells (Th17 antibodies) find a weak spot through the cribiform plate (boney plate that separates your sinus cavity from your brain). Now those antibodies are on the wrong side of your blood-brain barrier, where they don't belong. The brain's immune system (glial cells) react to this invasion and create an abundance of inflammation. It's an attack against self, but an understandable one. Those Th17 cells shouldn't be in the brain. This is what makes Pandas kids different from other kids who get the same infection - that breach of the blood-brain barrier.

 

Once this breach happens, other infections in addition to strep can trigger the same response, and now you have Pans. Research has shown that these Th17 cells can stay active even 2 months after an active infection has been cleared. But in my personal experience, once you clear the infection, the body settles back down and you see symptoms start to resolve.

 

So from a practical standpoint, if the antibiotics have helped your daughter clear her infection, then stopping the antibiotics should be ok. But realize if her body now responds in a Pandas way, she will be vulnerable to additional Pandas flares when she gets future infections. At least until she passes thru puberty - and at that point some kids outgrow it and some don't but seem to get less sensitive, tho still reactive.

 

Some kids who have repeated flares are kept on antibiotics prophylactically. Some are lucky enough to enjoy long periods of being infection-free and can just go on antibiotics quickly at the first signs of behavioral changes and the horse is put back in the barn without long periods of disruption. But the key is to react quickly without relying on strep tests or "proof" on a new infection - because once you have Pandas, it can be many other infections that trigger the same immune response. And even then, one antibiotic doesn't work on every bacteria (e.g. mycoplasma or lyme need different antibiotics than strep) and it doesn't work if the trigger is a viral or fungal infection (yeast, mold, colds, flu). So for kids who have trouble staying healthy, this can be a more chronic situation.

 

It's a delicate balance and you won't know until you stop the antibiotics and see what happens. If you see a return of symptoms right away it may mean that the infection isn't gone. If she seems back to baseline, then you'll need to be vigilant and hopefully have doctors on board who will allow you to put her back on antibiotics at the first sign of Pandas symptoms. But you should probably view this as a long term risk whenever she gets an infection. Pandas isn't a one time event. Once you have the condition, you stay vulnerable any time you have an infection, at least through childhood.

 

But to leave you with a bit of hope...,my son developed Pandas when he was 6. Over 5 years, we had to treat him for strep and Lyme and mold exposure that turned out to be in his elementary school. He spent 5 years on antibiotics. Then 2 additional years going on antibiotics at the first sign of symptoms. He's now 13 and has survived his first winter without any issues, even though he was sick several times. (we've switched to herbal antibiotics that I can have on hand and use quickly without needing to get in to see the doctor and he's old enough that he can recognize early feelings, so our ability to respond is much better now). But he also seems to be outgrowing his vulnerabilities.

[gtimothy]

I've been at this for many years, with two kids who are affected - here's my take on it-

 

You contract an infection and your immune system produces antibodies against that infection. So far so good. Then those immune cells migrate into your olfactory bulb (which may happen in all people because the sinuses are a first line of defense for keeping intruders out). But in Pans kids, those immune cells (Th17 antibodies) find a weak spot through the cribiform plate (boney plate that separates your sinus cavity from your brain). Now those antibodies are on the wrong side of your blood-brain barrier, where they don't belong. The brain's immune system (glial cells) react to this invasion and create an abundance of inflammation. It's an attack against self, but an understandable one. Those Th17 cells shouldn't be in the brain. This is what makes Pandas kids different from other kids who get the same infection - that breach of the blood-brain barrier.

 

Once this breach happens, other infections in addition to strep can trigger the same response, and now you have Pans. Research has shown that these Th17 cells can stay active even 2 months after an active infection has been cleared. But in my personal experience, once you clear the infection, the body settles back down and you see symptoms start to resolve.

 

So from a practical standpoint, if the antibiotics have helped your daughter clear her infection, then stopping the antibiotics should be ok. But realize if her body now responds in a Pandas way, she will be vulnerable to additional Pandas flares when she gets future infections. At least until she passes thru puberty - and at that point some kids outgrow it and some don't but seem to get less sensitive, tho still reactive.

 

Some kids who have repeated flares are kept on antibiotics prophylactically. Some are lucky enough to enjoy long periods of being infection-free and can just go on antibiotics quickly at the first signs of behavioral changes and the horse is put back in the barn without long periods of disruption. But the key is to react quickly without relying on strep tests or "proof" on a new infection - because once you have Pandas, it can be many other infections that trigger the same immune response. And even then, one antibiotic doesn't work on every bacteria (e.g. mycoplasma or lyme need different antibiotics than strep) and it doesn't work if the trigger is a viral or fungal infection (yeast, mold, colds, flu). So for kids who have trouble staying healthy, this can be a more chronic situation.

 

It's a delicate balance and you won't know until you stop the antibiotics and see what happens. If you see a return of symptoms right away it may mean that the infection isn't gone. If she seems back to baseline, then you'll need to be vigilant and hopefully have doctors on board who will allow you to put her back on antibiotics at the first sign of Pandas symptoms. But you should probably view this as a long term risk whenever she gets an infection. Pandas isn't a one time event. Once you have the condition, you stay vulnerable any time you have an infection, at least through childhood.

 

But to leave you with a bit of hope...,my son developed Pandas when he was 6. Over 5 years, we had to treat him for strep and Lyme and mold exposure that turned out to be in his elementary school. He spent 5 years on antibiotics. Then 2 additional years going on antibiotics at the first sign of symptoms. He's now 13 and has survived his first winter without any issues, even though he was sick several times. (we've switched to herbal antibiotics that I can have on hand and use quickly without needing to get in to see the doctor and he's old enough that he can recognize early feelings, so our ability to respond is much better now). But he also seems to be outgrowing his vulnerabilities.

This is probably the best summarised explanation of PANS/PANDAS that I have read in years!!!

[beckspanspandas]

Wow this was beyond helpful and I agree...the best explanation of what is happening to our kids. Thank you for taking the time to share this info and I'm glad your son is doing better.