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Well I think I may have jumped the gun a bit. Today is not looking as rosey as last night. Still some overall improvement, but whiney as all get out and obsessively coloring and wanting ME to do the figures for him because his aren't right. Dang it!! I shouldn't have let myself get my hopes up so much so quickly. It was still SOOOO nice last night to see him as he used to be and gives me hope overall.

 

 

Tantrums --

 

Don't give up hope! Like you, we had that first big "bump" in Return To Our Real Son right after we first started the antibiotics, but the blush came off our rose, too, over time. So much so, in fact, that I began to question whether or not the antibiotics were actually doing anything at all, or if it was all psychosymatic because we all WANTED them to work so badly!!

 

But when we took him off of them after 4 weeks, it only took about 10 days for some of the old behaviors to return in force. In effect, even though his improvement while on the abx had stopped being "exponential" as it had at first appeared it could be, the improvement had nonetheless been there, sneaking in. But it's subtlety was such that we wound up disregarding it. But, true to the idea that sometimes you don't value what you have until you've lost it, when the behaviors began their return when we took him off the abx, we realized we needed to put him back on and keep him on.

 

I even went back to "Saving Sammy" and did some rereading; my dad had read it, too, when we were first deciding to try abx for our son, and I recalled him mentioning that Sammy's return to health was marked by jigs and jags in his recovery, fits and starts. Of course, I had been so encouraged by the overall information and outcome of the book, my initial memory had just sort of ignored the points at which Sammy fell back, lost a little ground, etc., only to come back again and move on.

 

So, long way of saying, don't get discouraged by the backward bumps! It happened to Sammy, the Poster Child for what positive abx intervention can do in these cases, it's happened to my son, and it probably happens to most. I've decided to try what Beth Maloney did; in the journal we're keeping of our son's progress, as well as specifics when I have time to enter them, I'm just noting the overall "good" days from the "bad." When you can see that the "good" days are increasing in frequency versus the "bad," it'll help shore up your resolve, I think! :blink:

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Well I think I may have jumped the gun a bit. Today is not looking as rosey as last night. Still some overall improvement, but whiney as all get out and obsessively coloring and wanting ME to do the figures for him because his aren't right. Dang it!! I shouldn't have let myself get my hopes up so much so quickly. It was still SOOOO nice last night to see him as he used to be and gives me hope overall.

 

 

Tantrums --

 

Don't give up hope! Like you, we had that first big "bump" in Return To Our Real Son right after we first started the antibiotics, but the blush came off our rose, too, over time. So much so, in fact, that I began to question whether or not the antibiotics were actually doing anything at all, or if it was all psychosymatic because we all WANTED them to work so badly!!

 

But when we took him off of them after 4 weeks, it only took about 10 days for some of the old behaviors to return in force. In effect, even though his improvement while on the abx had stopped being "exponential" as it had at first appeared it could be, the improvement had nonetheless been there, sneaking in. But it's subtlety was such that we wound up disregarding it. But, true to the idea that sometimes you don't value what you have until you've lost it, when the behaviors began their return when we took him off the abx, we realized we needed to put him back on and keep him on.

 

I even went back to "Saving Sammy" and did some rereading; my dad had read it, too, when we were first deciding to try abx for our son, and I recalled him mentioning that Sammy's return to health was marked by jigs and jags in his recovery, fits and starts. Of course, I had been so encouraged by the overall information and outcome of the book, my initial memory had just sort of ignored the points at which Sammy fell back, lost a little ground, etc., only to come back again and move on.

 

So, long way of saying, don't get discouraged by the backward bumps! It happened to Sammy, the Poster Child for what positive abx intervention can do in these cases, it's happened to my son, and it probably happens to most. I've decided to try what Beth Maloney did; in the journal we're keeping of our son's progress, as well as specifics when I have time to enter them, I'm just noting the overall "good" days from the "bad." When you can see that the "good" days are increasing in frequency versus the "bad," it'll help shore up your resolve, I think! :blink:

 

 

mom,

when you say the old behaviors returned, do you mean exactly as they were before, or it seemed worse?

 

I think I have this fear that even if the antibiotics don't do anything 'dramatic' and then you take them off - that it may act as a dam, keeping back some antibodies, which were kind of just hanging around and causing some trouble, so this build up of antibodies is held back by the dam (antibiotics) and then when the abx is taken away, the dam is now overtaken by all the antibodies that have been held back and now rush in double and triple what it was before and this is what makes things worse? is this a bad analogy? its just my own thought. Even tho I see no real improvment on these antibiotics after about six weeks, I have this fear that if I stop, that he will be worse then ever before. is that possible?..... :lol:

 

Faith

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mom,

when you say the old behaviors returned, do you mean exactly as they were before, or it seemed worse?

 

I think I have this fear that even if the antibiotics don't do anything 'dramatic' and then you take them off - that it may act as a dam, keeping back some antibodies, which were kind of just hanging around and causing some trouble, so this build up of antibodies is held back by the dam (antibiotics) and then when the abx is taken away, the dam is now overtaken by all the antibodies that have been held back and now rush in double and triple what it was before and this is what makes things worse? is this a bad analogy? its just my own thought. Even tho I see no real improvment on these antibiotics after about six weeks, I have this fear that if I stop, that he will be worse then ever before. is that possible?..... :lol:

 

Faith

 

 

Hi Faith --

 

I wish I knew! Behaviors worse than before? It's hard to say, really; everything is so MOVEABLE, if you know what I mean?! :blink: You know how OCD can be like a game of Whack-a-Mole, and he succeeds in whacking it down in one area of his life, only to have it pop up somewhere else? We're constantly dealing with that. So when a behavior recedes or "evaporates," we're elated for a short time, but then, inevitably, some other behavior that we thought was long gone, or one we've never seen before, pops up.

 

So, let's see. The first thing we saw reduced on the antibiotics were his contamination fears. But we didn't see much of an impact anywhere else. We kept him on them for a solid 8 weeks and then, because he appeared to have "plateaued," we took him off. It took about 7 to 10 days before his behavior began to change again for the worse. But it wasn't contamination that ramped up (he remained generally unconcerned in that arena); it was his general fears and meltdowns associated with trying to avoid everything that made him fearful (namely homework and school). So, after about a 7-day break, we put him on again. Again, we saw almost immediate results, and his meltdowns and avoidance behaviors melted away within about 48 hours.

 

But then he began to have some stomach issues, despite the probiotics we've been giving him, and, again, the improvement plateaued. So we started thinking maybe it was just all psychosymatic and he'd initially improved because he wanted to and we wanted him to, not because the abx was having any real impact. So, once again, after about a week of the abx, we took him off.

 

But after about 10 days, his contamination concerns started creeping back, and while I wouldn't say they are actually WORSE than they were before, they are very close to being as bad if maybe only very slightly lighter than they were before. Because of his stomach issues, we thought we'd try just putting him at a half dose -- 500 mg. of Augmentin XR twice daily instead of the full, 1,000 mg. -- but we went four 4 days with no noticable improvement in the contamination alongside a noticable degeneration of his condition overall: double the daily meltdowns as before!

 

So, beginning this morning, we're back up to the full 1,000 mg. dose, twice each day. We're doing the probiotics on a slightly different schedule, hoping they'll abate the digestive issues and/or, maybe, those digestive issues were unrelated to begin with. Who knows?! I'll let you know if we have another 48-hour Miraculous Re-Emergence of Our Boy Before OCD this time, or if it takes longer, or perhaps shorter!

 

Probably the only way to tell precisely what impact the abx and/or withdrawal of the abx is having on the antibodies would be to constantly monitor things through blood tests, etc. But that just doesn't seem realistic, does it? I guess that's why the behaviors are our guide. I realize it's possible we MAY have done him some harm by taking him off only to put him back on, but I know other families have gone through similar trials, namely because the protocol isn't entirely established, and different kids and docs are trying different abx and dosages.

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Probably the only way to tell precisely what impact the abx and/or withdrawal of the abx is having on the antibodies would be to constantly monitor things through blood tests, etc. But that just doesn't seem realistic, does it? I guess that's why the behaviors are our guide. I realize it's possible we MAY have done him some harm by taking him off only to put him back on, but I know other families have gone through similar trials, namely because the protocol isn't entirely established, and different kids and docs are trying different abx and dosages.

What blood tests could you use to monitor the effects of the abx? Behaviors are the best guide so far.

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Is it also possible it is just the wrong antibiotic (I know it's too soon now to probaby know that)?

 

 

 

 

Well I think I may have jumped the gun a bit. Today is not looking as rosey as last night. Still some overall improvement, but whiney as all get out and obsessively coloring and wanting ME to do the figures for him because his aren't right. Dang it!! I shouldn't have let myself get my hopes up so much so quickly. It was still SOOOO nice last night to see him as he used to be and gives me hope overall.
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What blood tests could you use to monitor the effects of the abx? Behaviors are the best guide so far.

 

That's what I would think, re. the behaviors.

 

I don't know much about them, but I guess I'm just going back to the tests we've all either had or seen referred to on this forum and elsewhere: things like the ASO titer and DNase testing? If the antibodies have diminished, then the strep is under control, no? Honestly, I'm just guessing here, as I'm new to this PANDAS stuff. And I know I just saw another post where a mom said her kid's titer counts were all back in the normal range but her behaviors continued.

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If the antibodies have diminished, then the strep is under control, no?

 

I don't think so. My daughter has never had elevated (okay, once they were slightly above normal range) titers, but has historically tested positive on the rapid strep tests at least once a month. Honestly there is not that much known about why these titers are high in some and low in others, or how fast they rise and fall....they really are not great indicators of anything, unless you get an elevated titer-and that just indicates that you know for sure there was a past strep infection. Low titers do not rule out past strep infections, current strep infections or anything else.

 

Here is some up to date info on what is known:

http://www.latitudes.org/forums/index.php?...st=0#entry29305

These titers are one of the very confusing elements in the whole PANDAS "contoversy." Doctors frequently act like they are a test for PANDAS....they are not.

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These titers are one of the very confusing elements in the whole PANDAS "contoversy." Doctors frequently act like they are a test for PANDAS....they are not.

 

Well, our doctors, despite living in a major metropolitan area, did not know ANYTHING about PANDAS, so I've been driving all the response via web research, "Saving Sammy" and now forums like this. In other words, I'm ignorant, and our doctors are even MORE so!

 

So, if the ASO titer and DNase are NOT definitive PANDAs testing, what is? This "CAM" I've seen mentioned on this board several times? I'm unfamiliar. :huh:

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Hi Fixit,

 

We started the antibiotic route 5.5 years ago - I took any research I could find about antibiotics. They worked well with my son - he would do a 10 day course, symptoms would decrease then we would stop the antibiotics and symptoms would all come back. Paed was not comfortable with long term use unless I got the ok from ID clinic. They gave the ok based on how well he was doing when on them and how he would decline when off them. Neurologist agreed that antibiotics were the route to go based on how well he was doing. She saw no need for other kinds of meds. They are recommending he stay on them until he is 18. We used to go every few months for follow up (at the beginning - then every 6 months then once a year) Last year when we went they suggested that instead of coming in the following year they would just call and check in and see if we needed to have an appointment. We are very lucky - our paed is the one who prescribes them now based on the ID clinics recommendations. I also have a prescription that says every 5 days or as directed which allows me to do full doses when I see fit. I get a new prescription about once a year. I worked hard early on to convince them of the need for long term antibiotics.

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These titers are one of the very confusing elements in the whole PANDAS "contoversy." Doctors frequently act like they are a test for PANDAS....they are not.

 

Well, our doctors, despite living in a major metropolitan area, did not know ANYTHING about PANDAS, so I've been driving all the response via web research, "Saving Sammy" and now forums like this. In other words, I'm ignorant, and our doctors are even MORE so!

 

So, if the ASO titer and DNase are NOT definitive PANDAs testing, what is? This "CAM" I've seen mentioned on this board several times? I'm unfamiliar. :huh:

There isn't a definitive test at this point, its a clinical diagnosis. The CamK testing is in the study stages right now- the results are encouraging so far, but Dr. Cunningham is in the process of analyzing the data collected so far.

I understand how overwhelming all this information can be, we've all been there, and how frustrating it is to always feel like the answers are close, but just out of reach. Be patient with yourself and just try to absorb things a little at a time. Ask a lot of questions- even if its just to make sure you're understanding things right. Reading the info on the pinned thread at the top of the page is very useful....but its a lot of info. you'll have our help and support whenever you need it- even if you just need understanding ears to vent into!

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Oh don't worry! I'm not giving up hope yet. It's only been a few days. Overall today, I have to say I still do see some improvement. But he's wacky! Like alternating between the OCD, hyperactive whiny stuff and then moments of just pure happiness and peaceful. I'm thinking the abx is working, just will be a little more time.

 

I was actually afraid to say it out loud (or type it) last night and I guess I shouldn't have :huh:

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T.Mom,

I don't recall if I've asked this before, but when you had to do the full strengh for more than a month, was this during active strep infection, or just doing antibiotics randomly. I mean, does an 'exacerbation' mean that there was an illness at that time, or you were just going by the symptoms?

 

Thanks

Faith

Hi Faith--

The "3 exacerbations" that I was referring to were OCD and tics that came on with either cold illnesses or sinustis. She got sick 3 times (high temperatures, congestion) and the OCD/ticcing came back each time that fall season--It was a nightmare.

 

Each time antibiotics (full strength Amoxicillan) had an obvious very positive affect on the OCD/ticcing. This, IMO, is the Ps "construct." That after an initial strep infection it is possible that other illnesses may trigger the same brain inflammation (Swedo made reference to this) -- and it is the inflammation that must be quelled.

 

The time we finally decided to TRY antibiotics for a month, our d had a very bad cold (102 temp) and had been on 10 days of abx...once she came off of those 10 days, the doctor suggested going to prophylactic dose. * However, when we dropped to half-strength, at that point her OCD/ticcing came back full-force and much worst! We upped the abx to full strength again and within 4 days she was able to go back to school (she had been entirely incapacitated by OCD.)

 

I obviously really believe the antibiotics are key in successful treatment of Pandas. For us it was certainly a relatively benign risk to take and well worth it--No bad reactions thankfully.

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Well I think I may have jumped the gun a bit. Today is not looking as rosey as last night. Still some overall improvement, but whiney as all get out and obsessively coloring and wanting ME to do the figures for him because his aren't right. Dang it!! I shouldn't have let myself get my hopes up so much so quickly. It was still SOOOO nice last night to see him as he used to be and gives me hope overall.

 

I hope it's just a small setback. My dd had a few days after her drastic improvement where she bad times were creeping back. But they did not take hold. She is still fighting them back but she is still doing so much better.

 

Susan

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That after an initial strep infection it is possible that other illnesses may trigger the same brain inflammation (Swedo made reference to this) -- and it is the inflammation that must be quelled.

 

 

so you believe that the abx quell the brain inflammation? are there only certain abx that have anti-inflammatory properties or all? is it that the abx reduce the inflammation, or that they calm other factors that are causing the inflammation? would this be the same effect from ibuprofen? is there anything else that would have this same effect?

 

are you saying that you'd increase abx due to behavior regardless of evidence of bacterial infection? i think i'm having trouble understanding what the abx would do if not going after a bacterial problem. or is it that we can't be sure there is not a bacterial problem?

 

does no one really know and you're stating what you've observed as cause and effect with your treatments?

 

t-mom, can you remind me what your daughter is on now?

 

thanks!

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T.Mom,

I don't recall if I've asked this before, but when you had to do the full strengh for more than a month, was this during active strep infection, or just doing antibiotics randomly. I mean, does an 'exacerbation' mean that there was an illness at that time, or you were just going by the symptoms?

 

Thanks

Faith

Hi Faith--

The "3 exacerbations" that I was referring to were OCD and tics that came on with either cold illnesses or sinustis. She got sick 3 times (high temperatures, congestion) and the OCD/ticcing came back each time that fall season--It was a nightmare.

 

Each time antibiotics (full strength Amoxicillan) had an obvious very positive affect on the OCD/ticcing. This, IMO, is the Ps "construct." That after an initial strep infection it is possible that other illnesses may trigger the same brain inflammation (Swedo made reference to this) -- and it is the inflammation that must be quelled.

 

The time we finally decided to TRY antibiotics for a month, our d had a very bad cold (102 temp) and had been on 10 days of abx...once she came off of those 10 days, the doctor suggested going to prophylactic dose. * However, when we dropped to half-strength, at that point her OCD/ticcing came back full-force and much worst! We upped the abx to full strength again and within 4 days she was able to go back to school (she had been entirely incapacitated by OCD.)

 

I obviously really believe the antibiotics are key in successful treatment of Pandas. For us it was certainly a relatively benign risk to take and well worth it--No bad reactions thankfully.

 

Thanks T.Mom,

Did your daughter ever show high titers, just curious? did you (or the doctor) ever come to any conclusion as to why this abx seems to help with symtoms as long as she's on it? did that doc ever have any explanation, or you just go with it? I mean once the infection is gone, I really wish we knew what these antibiotics were doing to keep these symtoms away. there has to be something else other than keeping infection away. I know we've discussed this alot here, but its all speculation.

 

Now thus far I am not having any success on a month of augmentin and almost a month on azith. I also know there is no proof of current strep infection in my son. I am currently reading over the book 'saving sammy' and see that for him it was the titers that told the story. we have low titers. I wonder if the success on abx is for those that show high titers. (not saying others won't benefit, but maybe the ones who have the obvious benefit from abx and decline when going off, are the ones with high titers?). :blink:

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