Is it possible to see a difference w 2 days of antibiotics

[peglem]

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?).

 

My low-titered child improves w/ abx and declines w/o it.

[Diana]

The antibiotic results will be the same whether the ASO/D-nase titers raise or not. I have now tracked pretty clearly 60 cases. There is no difference. Sometimes there are comorbid problems - underlying chronic intracellular influenze bacteria, ebstein's barr, pneumonia bacteria - etc etc - that if parents do not get decent bloodwork go undetected. Not only the strep but a comorbid issue will keep the illness running. That is when 5 to 6 weeks of daily antibiotics will prove effective. There is not one child, if treated and looked at carefully -- who does not seem to get better. But this is the trick isn't it?? finding a smart, curious doctor.

[faith]

Diana,

thank you so much for that info. are you saying that abx also work on these other comorbid illnesses? that there is some bacterial infection going on somewhere, and that abx should eventually help clear that? I think we're about 45 days on two different abx, but my son's symptoms are still blatantly there,, mostly tics, with vocal being the prominent one.

 

thanks

Faith

[T_Mom]

Faith--We never had evidence of high titers either.

Hi Smartyjones--

Forgive the length of this, but you have such good questions. I have bolded my replies below--All the best, TMom

so you believe that the abx quell the brain inflammation?

Yes, I do think that one result of Amoxicillan treatment is an anti-inflammatory effect. As I have noted before, an original Ps doctor who saw our d told us Amox. had anti-inflammatory effects (as well as other effects of course!)

 

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?

Good questions--I don't know:) There may also be anti-inflammatory effects from some SSRIs, I was told that by a Hopkins Dr.

 

would this be the same effect from ibuprofen? is there anything else that would have this same effect?

Again, good questions, I do not know--

 

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?

 

Good questions, let me try to explain--Our d was hit by what OCD expert Dr. Judy Rapoport called an OCD "storm". She had sudden-onset severe, regressive, OCD -- and had it show up more than once. Accompanying this she has had mild tics (face-stretching, etc.)

 

Our d was entirely incapacitated by OCD within the span of 4 weeks in the summer of 08. She told us along the way that, "OCD told me to..." time and again. We have seen more than 16 doctors within the ensuing year, including OCD experts, CBT therapists, etc.

At the worst she was step-stepping, touching things, holding spit in her mouth until it over flowed, holding her eyes closed, holding "painful" positions, or arching her back in the car until she cried from pain, she became frighteningly unpredictable, she had bathroom accidents, and stopped speaking (literally no words) for almost 4 weeks. She presented as a naughty 4 year old (she was 10)--I thought our d (talented and gifted) was gone. She would throw food and spit at us, etc. Nightmare. MRI, bloodwork, etc. showed nothing--

Around this time, I contacted Diana who reminded me on the phone that encephalitis (ie, brain inflammation) was of course treated with anti-inflammatory agents--(thank you D.!) The ONLY thing that showed up medically at this time was sinusitis on the MRI...as a result my h suggested we put her on antibiotics (given his reading on Ps) and at the same time we consulted with Dr K (by phone) and he suggested a steroid burst--which we did.

 

8pm one evening in late August she came downstairs walking and talking--not 100%, but talking, eyes open, etc. Almost 100% --healing took time. However, I can attest that the results were remarkable, one doctor used the word miraculous.

 

Do I think it was the steroids and/or antibiotics that cleared her that time, YES. Though we did not fully "get it" yet...

 

After the REALLY bad episode, and her subsequent good reaction to abx and steroids, we only did the regular 10 days of abx. She went on to do "OK" until she caught a cold within about a month, and then another one, and another. 3 times she had obvious cold-like issues that fall-winter and the OCD/ticcing came back, and we gave her a 10 day abx treatment each time, and she got better--OCD/ticcing subsided. Until last December.

 

She had another cold, high fever, congestion, etc. After 10 days of abx she was "better" but then we went to half-strength abx as a prophylactic measure, and her OCD exploded. I suspect the illness had not been eradicated by the abx. She quickly became incapacitated again--did not speak for 10 days over Christmas, etc. We increased her abx to full-strength , and she was better within 4 days and able to go to school.

 

She has been on full-strength abx ever since, almost a year now. She had another steroid burst around March as after 3 months of abx she was still only about 85% herself, and the steroids brought her back to 125% herself--

 

So that is where we are--I would start abx full-strength again in a hearbeat for at least a month, to see if they worked. For us it certainly was a relatively benign treatment and with the additional steroid treatment our d is back.

 

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

 

Amoxicillan 1000 mg a day, 20 mg of Prozac (afraid to change a thing), vit D, multi-vitamin, and various probiotics.

[faith]

T.Mom,

thanks so much for that detailed info, it really helps to get an overview of someone's history.

 

but owww , now I have to ask about the prozac? when was this introduced? in the beginning of it all? were the episodes of regression while she was on that? I mean, how do you know it isn't the prozac that is the frontrunner? would you mind if I asked what the experience of that has been? any side effects? I ask because the new pediatrician that I have recently consulted (who is knowledgeable of PANDAS/tourettes, and was willing to kind of take over and participate in figuring out where my son stands) has mentioned prozac as a possibility. we're not there yet, but he sees kids with tics, ocd, etc. have much anxiety about all this and I guess it kind of helps with the mood swings? I know my son does get quite indignant when his tics or issues are mentioned by me. He is 10 1/2 and is beginning to know he has some problems, so the can get quite agitated by all of this. as others have said, we sometimes 'walk on eggshells' so as not to antagonize the issue. thus far I have not given any meds all these years, and I'm pretty skiddish about them. only remotely considering or researching it now because he is getting older, schoolwork is more demanding, I really don't want to go there, but, well, things are not exactly looking up around here....

 

thanks so much,

Faith

[T_Mom]

T.Mom,

thanks so much for that detailed info, it really helps to get an overview of someone's history.

 

but owww , now I have to ask about the prozac? when was this introduced? in the beginning of it all? were the episodes of regression while she was on that? I mean, how do you know it isn't the prozac that is the frontrunner? would you mind if I asked what the experience of that has been? any side effects? I ask because the new pediatrician that I have recently consulted (who is knowledgeable of PANDAS/tourettes, and was willing to kind of take over and participate in figuring out where my son stands) has mentioned prozac as a possibility. we're not there yet, but he sees kids with tics, ocd, etc. have much anxiety about all this and I guess it kind of helps with the mood swings? I know my son does get quite indignant when his tics or issues are mentioned by me. He is 10 1/2 and is beginning to know he has some problems, so the can get quite agitated by all of this. as others have said, we sometimes 'walk on eggshells' so as not to antagonize the issue. thus far I have not given any meds all these years, and I'm pretty skiddish about them. only remotely considering or researching it now because he is getting older, schoolwork is more demanding, I really don't want to go there, but, well, things are not exactly looking up around here....

 

thanks so much,

Faith

 

Hi Faith,

Yes, at the very beginning she was put on a very low level zoloft and then switched to a very low Prozac, and yes, right through the exacerbations it has been held steady. It has been a constant. We only wanted to change "one thing" at a time, and chose to add antibiotics and then steroids.

 

Her "illness-triggered" Pandas symptoms (OCD and mild tics) subsided with the antibiotic treatment! Coupled with 2 steroid treatments, all is well. It is worth a try.

 

(The 'regression' issues during the really bad exacerbation were connected to severe OCD--she was not on the SSRI at the time.)