Lowered our dose of abx

[airial95]

Had another follow up with our ped. for our 2 year old PANDAS son. He's been on azith for 15 days (after a previous 15 day course with only a few days off in between) He had some real ups and downs this week, with most of his anxieties focused around day care. But the last two days have been near symptom free - no meltdowns and able to curb usual triggers before they set him off.

 

We went into the Dr. armed with the charting I've been doing based on Buster's information (thank you!!) showing his ups and downs. The pediatrician seems to think that he's progressing well, discussed some psychotic drugs as an option, but we both agreed that he's showing so much promise on just the abx that it's not time to even talk about that yet (I'm not sure I EVER want to have that conversation!!) He also mentioned Behavior Modification Therapy again, especially considering as he's progressed, we've been able to identify some of his OCD triggers (and he's also been able to verbalize them to some extent too)

 

But he's dropped him to only 50mg of Azith per day for the next 15 day course. He said if he shows a dramatic uptic in symptoms we can go back and increase, but I'm not sure. It seems too soon to lower it.

 

On another note - the Dr. LOVED the charting we were doing (I even included color graphs with trendlines - what can I say, I'm an engineer), and asked that I email them to him weekly so we can track progress and modify his abx as necessary - that seems like a good thing.

 

Compared to the brick wall experiences many of you have been having, and the fact that my Dr. has no real issus so far keeping him on long term abx (especially if it can avoid more invasive drugs) I should have some faith and see what happens.

 

How long were some of your kids on the abx before they lowered doses?

[MomWithOCDSon]

We've been on Augmentin XR 1,000 mg. twice daily for almost 5 months now, and we're looking to step DS12 down any day now, as soon as I can get hold of the pediatrician to agree on a new dosage. It'll be a trial, though, and if his behaviors ramp back up, I'll be looking to go back up to the higher dosage for another stretch.

 

I just hope our pediatrician will stay on the ride with us!

[P_Mom]

Well, for my two boys, both were on regular 10 day doses of first PenVk, and then Keflex (because the Pen VK didn't eradicate the strep). After the 10 days of Keflex (for strep), the antibiotics stopped because we didn't yet know what the heck happened to our kids. The Keflex must have eradicated the strep (thank God), because, they both gradually improved even off the antibiotics.

 

5 months later, however, they both went on proph. antibiotics because by then we knew what had happened to them. Don't want to go there again!

 

I am really curious as to why some kids can go off antibiotics and be okay, you know, their symptoms resolve, and, some have to stay on a long time because when they try to go off, their symptoms come back. Is it because the strep just can't be eradicated with some kids? Is it determined by when the child gets treated? (mine were treated quickly) ??? Any thoughts?

My kids can go off antibiotics and be the same...the antibiotics are just to prevent strep at this point. Why the difference?

[justinekno]

How did you know the pen vk didn't eradicate the strep? Did you do a throat culture? We just finished a 30 day pen vk but my son never had a throat culture and aso titers were borderline so othere than symptoms, we have nothing to gauge.

 

Well, for my two boys, both were on regular 10 day doses of first PenVk, and then Keflex (because the Pen VK didn't eradicate the strep).

[P_Mom]

3 days after the course ended, my older son (symptomatic..younger son, no symptoms) complained his throat was sore again. His throat was all red with those little spots again...it was obvious. Called the doc and they said the Pen didn't eradicate it and put them on Keflex.

[MomWithOCDSon]

I am really curious as to why some kids can go off antibiotics and be okay, you know, their symptoms resolve, and, some have to stay on a long time because when they try to go off, their symptoms come back. Is it because the strep just can't be eradicated with some kids? Is it determined by when the child gets treated? (mine were treated quickly) ??? Any thoughts?

My kids can go off antibiotics and be the same...the antibiotics are just to prevent strep at this point. Why the difference?

 

That's the $10,000 question! We had our DS12 on abx for a full month, and then we pulled him off, thinking that it was all good; it was only about 8 or 9 days before his pre-abx behaviors started ramping back up again. So we put him back on, and again, the behaviors receded. Once again, we pulled him off after another 30 days, and once again, the behaviors started creeping back up after about 8 or 9 days. So, this last time, we put him on and kept him on for about 3 more months now, hoping this time, he'll be able to hold even once we step down or stop.

 

Beth Maloney told me that she and Sammy had similar experiences, so they let the behaviors be their guide as to when stepping down off abx was possible. I do think it may have to do with age and when/how quickly the strep or other infectiious component is caught and identified. We didn't even try PANDAS treatment until this past year because he'd always been asymptomatic for strep (though his titers, once we finally did test, were extremely elevated), but he was dxed with OCD at age 6 and showed signs of OCD behaviors well before that (around 3?). So, it appears that he may have gone some 6 to 9 years without having the underlying cause treated. So it will take longer intervention for his system to recover? Does that make sense?

[justinekno]

deleted

[justinekno]

I think that is where we are. We have had these same issues for the past 7 years and I have heard that tics are the hardest to eliminate. What antibiotic is your son taking? Did you stay with the same one all along?

 

 

 

 

That's the $10,000 question! We had our DS12 on abx for a full month, and then we pulled him off, thinking that it was all good; it was only about 8 or 9 days before his pre-abx behaviors started ramping back up again. So we put him back on, and again, the behaviors receded. Once again, we pulled him off after another 30 days, and once again, the behaviors started creeping back up after about 8 or 9 days. So, this last time, we put him on and kept him on for about 3 more months now, hoping this time, he'll be able to hold even once we step down or stop.

 

Beth Maloney told me that she and Sammy had similar experiences, so they let the behaviors be their guide as to when stepping down off abx was possible. I do think it may have to do with age and when/how quickly the strep or other infectiious component is caught and identified. We didn't even try PANDAS treatment until this past year because he'd always been asymptomatic for strep (though his titers, once we finally did test, were extremely elevated), but he was dxed with OCD at age 6 and showed signs of OCD behaviors well before that (around 3?). So, it appears that he may have gone some 6 to 9 years without having the underlying cause treated. So it will take longer intervention for his system to recover? Does that make sense?

[MomWithOCDSon]

I think that is where we are. We have had these same issues for the past 7 years and I have heard that tics are the hardest to eliminate. What antibiotic is your son taking? Did you stay with the same one all along?

 

We tried regular Augmentin (875 mg., 2x daily) first, and then switched to the Augmentin XR after the first couple of rounds of regular Augmentin. We've never actually tried, or felt like we needed to try, anything else.

 

We were led to the Augmentin via "Saving Sammy," which I'd found before I found this forum or knew any other families or their experiences. It appears that we were lucky in terms of finding an effective abx for him, even if we'd been somewhat unlucky up to that point, having the PANDAS identified so late in its progression. I've read that different strains of strep in different parts of the country are resistant to various abx, so sometimes what works for one family won't work for another.

 

But for us, the XR has been a dramatic piece of the healing puzzle, along with ERP, probiotics, vitamins and lots and lots of patience!

[thereishope]

Mom...did you try to take him off antibiotics all together or lower his dosage?

[smartyjones]

5 months later, however, they both went on proph. antibiotics because by then we knew what had happened to them.

 

 

just trying to get it straight in my mind --

 

p.mom - were both your boys not pandas symptomatic for those 5 months and you put them on proph abx to keep the strep away rather than treat any existing symptoms? were the symptoms primarily behaviors or tics?

 

momwithocd -- is your son rid of all pandas symptoms that you are now thinking of stepping down the abx? also, primary behaviors or tics? did you just get on abx after saving sammy came out?

 

sorry - it's hard to keep everyone straight and i'm so very interested in how people are managing and what criteria eveyone uses to gauge success! thanks.

[MomWithOCDSon]

Mom...did you try to take him off antibiotics all together or lower his dosage?

 

We tried stopping altogether. His improvement was dramatic in the first 48 hours of the abx, and then it plateaued after that, right through the 3-week course. So we thought maybe they'd done all they could. Turns out we were wrong, but until I made it a point to track the more subtle improvements/changes (like attitude, ability to recover from meltdowns more quickly, etc.), his progress on abx on a daily basis was tricky to ascertain.

 

It was only in daily tracking and a broader time scope that we were made definitively aware that the abx were continuing to help him. I guess it's sort of like the way you don't realize how tall your kid is growing because you look at him every day. But if you track him (on a door frame), or a friend or relative who hasn't seen him in a while mentions how much he's grown, then your own eyes open up a bit. The journal and some outside feedback (like his teachers and IEP caseworker at school) have helped us in that respect.

 

This time, we won't stop altogether; we'll step it down.

[MomWithOCDSon]

momwithocd -- is your son rid of all pandas symptoms that you are now thinking of stepping down the abx? also, primary behaviors or tics? did you just get on abx after saving sammy came out?

 

Is he rid of all PANDAS symptoms? I really don't know. I've seen a lot of people on the forum talk about "residual OCD" post-PANDAS, and I guess I'm thinking that's what we're seeing now. Because he's been living with some OCD behaviors . . . however mild they've been at points in time . . . since he was six, I guess I don't expect those behaviors to evaporate entirely. Even with therapy, I expect he will always have a little perfectionism, a little germaphobia, etc. My measure is, is it interfering with his ability to live his life? Does it prevent him from doing something he wants to do? From being who he wants to be? He's doing very well now and, for all practical purposes, back to living his pre-PANDAS life, so that's why I'm thinking we might try stepping him down now, to a lower abx dose.

 

DS13's behaviors are primarily OCD; he has had some minor vocal tics from time to time (throat clearing, repeating words, etc.), but they have never been especially primary or volatile.

 

And finally, yes, we got on abx after "Saving Sammy." Many years ago, when I first heard of PANDAS, I insisted on having DS tested, but when the throat culture came back negative, at that point in time, I didn't know there were any other options or avenues. It wasn't until "Saving Sammy" cemented the concept of a kid being entirely asymptomatic for strep, but still contending with it, that I discovered there was still a possibility and a route to go and push for more answers. An ASO titer test revealed significantly elevated titers which, though i now know is far from a definitive answer, was enough to convince his pediatrician to help us with abx.

[thereishope]

Once a child is high dose antibiotics for a long time, it's like they need to get weaned off. If I remember correctly, someone said that when meds like augmentin is at high dose, it does actually start to kill the bacteria. When it is at a lower dose, it just slows the reproduction of the bacteria down and the immune system kills it off. So, a stepping down does make sense. It's almost feels like you're retraining the immune system in what to do.

 

Even when I considered my son 100% recovered, he'd still amaze me with new things. I think a lot of the smaller "oddities' or quirks become such second nature to us, we forget that they are not what other children exhibit and it's not till they change their ways do we realize they made even more strides. I used to also find it funny how I'd reread journal entries and be reminded of something he used to do and it wasn't till that point did I realize he overcame something else.

[P_Mom]

Well, within the 5 months after onset, and after two 10 day courses of antibiotics, my sons gradually improved until they were 99% for my younger son, and my older son improved to 100%. (at time of diagnosis and proph. antibiotics given) So, no they were not 100% in that time frame, however, steadily improving. Then, we got a diagnosis and they went on proph. antibiotics to ward off strep.

 

Myn older son primarily had tics...my younger some had the whole nine yards...ocd, tics, anxiety, aggression, etc.

 

They are holding steady on the Proph. antibiotics, with minor flairs with illness....