Ped. willing to try abx---need help please

[eljomom]

Just heard back from ped. that the antidnase titers were "negative" and therefore she has a tic disorder. I told him what I'd been researching about pitands, etc. and he said there would be no harm in doing 3 weeks of antibiotics. I told him we should get bloodwork done first, and that i'd consulted with a specialist, and he said to just fax him what tests to run and he'd do it.

 

So, I've been e-mailing w/Dr. T, and he wants to do a phone consult. I thought he'd order the bloodwork first, so we knew what we were dealing with, but i just told him ped. is willing to order,etc. and he said we need to have consult prior to ordering tests. Also said to go ahead and start antibiotics, that they wouldn't affect tests. I have apt. with Dr. Latimer on dec. 23, but want to get the ball rolling.....

 

What the heck do I have the ped. put her on? Strep titers were normal. She had walking pneumonia in march (myco p??), and high fever in june (not likely strep) --that's what sent her over the top with tics.

 

Also, if this is autoimmune at this point, still not understanding why in the world antibiotics will help? If the strep a year or so ago started the autoimmune process, and myco p, viruses are now causing the blood brain barrier to be breached, and she's not infected, then why antibiotics? I hit this same replay button in my head a million times a day......yet i still want to try antibiotics!!!

Thanks!

[peglem]

My 2 cents: The 1/2 life of an antibody is roughly 3 weeks. If your child is having an autoimmune reaction-something is provoking the generation of more auto-antibodies, and that could very well be a slow growing infection (mycoP?).

[Fixit]

Just heard back from ped. that the antidnase titers were "negative" and therefore she has a tic disorder. I told him what I'd been researching about pitands, etc. and he said there would be no harm in doing 3 weeks of antibiotics. I told him we should get bloodwork done first, and that i'd consulted with a specialist, and he said to just fax him what tests to run and he'd do it.

 

So, I've been e-mailing w/Dr. T, and he wants to do a phone consult. I thought he'd order the bloodwork first, so we knew what we were dealing with, but i just told him ped. is willing to order,etc. and he said we need to have consult prior to ordering tests. Also said to go ahead and start antibiotics, that they wouldn't affect tests. I have apt. with Dr. Latimer on dec. 23, but want to get the ball rolling.....

 

What the heck do I have the ped. put her on? Strep titers were normal. She had walking pneumonia in march (myco p??), and high fever in june (not likely strep) --that's what sent her over the top with tics.

 

Also, if this is autoimmune at this point, still not understanding why in the world antibiotics will help? If the strep a year or so ago started the autoimmune process, and myco p, viruses are now causing the blood brain barrier to be breached, and she's not infected, then why antibiotics? I hit this same replay button in my head a million times a day......yet i still want to try antibiotics!!!

Thanks!

 

from what i understand myco p can hide..ie spinal column..i think specific organs.

strep can go intracellular..so it too is hiding..

it's also found in anus, sinus and alot of peopple dont' produce titers

 

from my current understanding..if it might be myco p...biaxin is best

if strep the penicillina..preferably aug xr hd..

but zith covers both..maybe not best choice for myco...and there are some zith resistant streps

also each child repsonds different and you may have to swithc abx

Edited October 28, 2010 by Fixit

[airial95]

I can't explain to you the science, or why things work - but our pediatrician did the same thing - a trial of 30 days abx (7 months after the last active strep infection!!). The difference was amazing - within 10 days the violence was gone, and within 14 the rages were manageable again. Was he cured in the course of 30days? No - but he did show such a significant improvement that it confirmed to our doctor that we were likely dealing with PANDAS. We've been on abx for 10 months now - and are about 85% back to normal (we did get strep 2x during that 10 months)

 

And for the record - my son's bloodwork has all come back completely normal...even when it was taken immediately after a POSITIVE culture.

[tired mom]

For myco have IgG and IgM levels tested. If it is myco then I would go with Biaxin. I will tell you it is a very hard bugger to treat. My dd levels still are on the high end but after a year they are slowly coming down and the symptoms are at a minimal right now. (Hope I did not just jinx myself)

[eljomom]

what abx did your ped. try...just curious?

 

I can't explain to you the science, or why things work - but our pediatrician did the same thing - a trial of 30 days abx (7 months after the last active strep infection!!). The difference was amazing - within 10 days the violence was gone, and within 14 the rages were manageable again. Was he cured in the course of 30days? No - but he did show such a significant improvement that it confirmed to our doctor that we were likely dealing with PANDAS. We've been on abx for 10 months now - and are about 85% back to normal (we did get strep 2x during that 10 months)

 

And for the record - my son's bloodwork has all come back completely normal...even when it was taken immediately after a POSITIVE culture.

[airial95]

He did a 30 day course of azith straight away and that got him back to about 40-50%. We tried to go off after 30 days and the behaviors were back full force within 72 hours (further confirming to our pediatrician that we were dealing with PANDAS). We stayed on full stength for another 30 days, and then dropped dosage to half. He was at about 70% at this point, and holding well. He was on this dose for about 8 months or so and making slow but steady improvement, but we noticed he was very sensitive to exposure (would have a very systematic 3 day flare of symptoms, followed by about a week or so of trouble before we got back to our baseline). He got strep 2x on the azith, which was treated with 10 days of cefdinir with a shot of rifampin. With the actual infections, the behaviors flared for only a day or two (but were MUCH worse than just and exposure) - they would subside quickly with the abx switch, but we would still take a couple of weeks to get back to baseline.

 

After the second strep infection - Dr. Murphy changed him to full dose cefdinir - we're on our second month there, she's going to do one more and then try to take him off. We're at about 85% right now, and doing well. The pattern of behaviors we're seeing with the cefdinir is different than the azith.

 

With the azith - at our best we would go days at a time without issue (12 days was our best streak), then he would have an small OCD flare up or something would happen to trigger anxiety and we would have a bad day or two. With the cefdinir, we're seeing the axiety a bith more often (a couple of times a week) - but it subsides much quicker - an hour or two vs. days. So I'd say we're doing better on the cefdinir. Our only tick seems to have been about 98% eliminated as well.

 

I know from others on here that it may take a bit of trial and error to see what works for you. Some get no results from azith, but dramatic results from augmentin or others. I wish you the best of luck!!