Azithromycin- trouble lowering the dose

[fsilverpsych]

Hello,

 

My son Jack (now 6) was diagnosed with PANDAS at 4.5 years old. He has done wonderfully on azithromycin 200 mg twice/day (bid). This was following an initial trial of a different antibiotic and a 5-day steroid burst (worked great). We didn't keep him on long-term abx (at first!). After multiple episodes of strep with subsequent abx 10-20 day courses (he also has mycoplasma), we also did a month long steroid taper one summer. This kept him symptom free for several months (until the next strep episode, of course!). Finally, after so many brief trials of abx and back-sliding with each discontinuation- we finally realized he benefitted from staying on the abx and he's been on azith. in the above dose since Nov. 2010.

 

We prepared him for an April 2011 tonsillectomy by giving a course of clindamycin before the surgery and maybe one week after... followed by immediately going back on the full-strength twice daily dosage of azith. The tonsillectomy went great and we haven't had any strep since.

 

However- every time we even try to reduce the azith. to even a once/daily dose- he starts to have symptoms (his symptoms have always been relatively minor- a few tics at a time, some obsessive rumination- mostly at night, which makes him scared to sleep, some compulsions, emotional lability and sensitivity- along with separation anxiety- however, all still relatively minor and manageable, and finally some day and nighttime wetting- oh also, handwriting and drawing deterioration... basically, all of the classic PANDAS symptoms- just currently mild and manageable).

 

Even though his symptoms are manageable- we hate to see him suffer (e.g. the nights are so sad as he is writhing in his bed, afraid to sleep b/c he can't get images and thoughts out of his head).

 

Dr. T did some recent blood work (which all looked pretty good)... however, given the past mycoplasma issue, he wondered if maybe there was still a chronic, underlying issue... preventing us from slowly titrating down on the azith. He recommended a 10 day trial of clindamycin- which worked great at reducing Jack's sxs even further before his tonsillectomy.

 

We stopped the azith. and started the clindamycin... by day 8, all we have noticed is a return of his PANDAS sxs- albeit, still mild... but very noticeable to us and even to him (even though he still doesn't know what "PANDAS" is, he knows his body feels "weird" and that he is having the nightmares again (it's actually more rumination before sleeping than actual nightmares).

 

Are any other kids SO sensitive to azithromycin only?!! Are we destined to keep him on such a high dose? I was hoping to have him on a maintenance dose (which Dr. T said would be once/daily only twice/week... we can't even seem to get to once/daily!!!

 

Any thoughts?!

 

Thanks in advance,

Frannie

[bws]

Hello,

 

My son Jack (now 6) was diagnosed with PANDAS at 4.5 years old. He has done wonderfully on azithromycin 200 mg twice/day (bid). This was following an initial trial of a different antibiotic and a 5-day steroid burst (worked great). We didn't keep him on long-term abx (at first!). After multiple episodes of strep with subsequent abx 10-20 day courses (he also has mycoplasma), we also did a month long steroid taper one summer. This kept him symptom free for several months (until the next strep episode, of course!). Finally, after so many brief trials of abx and back-sliding with each discontinuation- we finally realized he benefitted from staying on the abx and he's been on azith. in the above dose since Nov. 2010.

 

We prepared him for an April 2011 tonsillectomy by giving a course of clindamycin before the surgery and maybe one week after... followed by immediately going back on the full-strength twice daily dosage of azith. The tonsillectomy went great and we haven't had any strep since.

 

However- every time we even try to reduce the azith. to even a once/daily dose- he starts to have symptoms (his symptoms have always been relatively minor- a few tics at a time, some obsessive rumination- mostly at night, which makes him scared to sleep, some compulsions, emotional lability and sensitivity- along with separation anxiety- however, all still relatively minor and manageable, and finally some day and nighttime wetting- oh also, handwriting and drawing deterioration... basically, all of the classic PANDAS symptoms- just currently mild and manageable).

 

Even though his symptoms are manageable- we hate to see him suffer (e.g. the nights are so sad as he is writhing in his bed, afraid to sleep b/c he can't get images and thoughts out of his head).

 

Dr. T did some recent blood work (which all looked pretty good)... however, given the past mycoplasma issue, he wondered if maybe there was still a chronic, underlying issue... preventing us from slowly titrating down on the azith. He recommended a 10 day trial of clindamycin- which worked great at reducing Jack's sxs even further before his tonsillectomy.

 

We stopped the azith. and started the clindamycin... by day 8, all we have noticed is a return of his PANDAS sxs- albeit, still mild... but very noticeable to us and even to him (even though he still doesn't know what "PANDAS" is, he knows his body feels "weird" and that he is having the nightmares again (it's actually more rumination before sleeping than actual nightmares).

 

Are any other kids SO sensitive to azithromycin only?!! Are we destined to keep him on such a high dose? I was hoping to have him on a maintenance dose (which Dr. T said would be once/daily only twice/week... we can't even seem to get to once/daily!!!

 

Any thoughts?!

 

Thanks in advance,

Frannie

 

 

How long is he on abx. Schulman recommends keeping kids on abx for 3-6 INITIALLY and then tapering slowly.

Edited July 17, 2011 by bws

[MaxParkersMom]

I sometimes skip and do every other day, or two days if my son seems stable. When around a lot of children I don't. He has been on them for 3 months and I am experimenting now. I will never take them off of them until past 25 if the doctors play ball with me. Do what you think your son needs? Does anyone do lemon water here to support liver functions while on the azith??

Edited July 29, 2011 by MaxParkersMom

[smartyjones]

My son Jack (now 6) was diagnosed with PANDAS at 4.5 years old. - we finally realized he benefitted from staying on the abx and he's been on azith. in the above dose since Nov. 2010.

 

However- every time we even try to reduce the azith. to even a once/daily dose- he starts to have symptoms (his symptoms have always been relatively minor- a few tics at a time, some obsessive rumination- mostly at night, which makes him scared to sleep, some compulsions, emotional lability and sensitivity- along with separation anxiety- however, all still relatively minor and manageable, and finally some day and nighttime wetting- oh also, handwriting and drawing deterioration... basically, all of the classic PANDAS symptoms- just currently mild and manageable).

 

We stopped the azith. and started the clindamycin... by day 8, all we have noticed is a return of his PANDAS sxs- albeit, still mild... but very noticeable to us and even to him (even though he still doesn't know what "PANDAS" is, he knows his body feels "weird" and that he is having the nightmares again (it's actually more rumination before sleeping than actual nightmares).

 

Are any other kids SO sensitive to azithromycin only?!! Are we destined to keep him on such a high dose? I was hoping to have him on a maintenance dose (which Dr. T said would be once/daily only twice/week... we can't even seem to get to once/daily!!!

 

 

 

hi frannie. glad to hear you are seeing such good success and i know it is so frustrating when there are backslides. we follow a bit of a different path - integrative MD and homeopathic remedies so i don't know the abx so well but wanted to share our story.

 

my ds also had onset at age 4.5 also. he first tried a 5-day course of azith which was horrible for him. then did 30 days of kelfex and saw 100% remission in about 3 days. unfortunately, he relapsed after about 30 days off abx. he went back on and saw improvement but not so dramatic as before. our search led us to homeopathy and he was on some form of homeopathic treatment for strep. he was on pleosanum for about 9 mths - various ups and downs. whenever we tried to reduce, he backslide. when we switched to our current dr, we switched meds. after about 8 weeks, things were looking good and we tried to taper. no go. dr said we'd just keep him on that for a long time. we were also working to clear other infections as well. we kept him on that for another 6 mths - til Dec 2010. then we tried to taper again and he did well. 2 years and 2 months after onset; 23 mnths after first abx; 22 mths after first success with abx.

 

it is a conundrum b/c you want to only use abx when necessary -- just figuring out that 'necessary' proves difficult. i remember too clearly kicking myself when he started to backslide. ds did have high titers that were falling but were still quite high. he only cultured positive the very first time, each after was neg -- even when we were sure he'd be positive.

 

just my opinion, but i think that symptoms slide indicates infection. i'd say do what you can to counteract the neg effects of the abx but use them.

[tpotter]

We also have had a lot of trouble decreasing the azith, especially in me. I had mycoP, and for 3 years before being diagnosed with it (thanks to Dr. B. who tested the whole family for strep and MycoP...my IgM was 1750), my asthma would get so bad I would finally take azith...no other abx ever worked. I finally managed to get extra doses around the house (I don't remember how...maybe through my kids, because I was fed up having to keep running back to the doc, who didn't know what was wrong with me.)

 

I was diagnosed with MycoP August 2010! I have been unable to lower my dose of azith (250 mg twice a day), even though I am now being treated for Lyme and co-infections (my entire family turned out to have Lyme and co-infections, such as babesia, bartonella, erlichiosis, even though I never would have thought they had it. and I do believe it was all underlying the PANDAS.) In fact, my DS15 was such classic PANDAS onset at 8 years old, and he only had 1 band positive on WB, but once tx started, the symptoms started coming out en masse, and I can't ignore the clear clinical signs (plus erlichiosis ended up coming back positive on blood test finally)

 

I have been seeing an LLMD, and am on different abx...have done doxy + azith (started having problems with the doxy after awhile). I've also done flaggyl + azith, tindamax + azith, and now mepron + azith. When I try to lower the azith, I get symptoms. But, the good thing is that my chronic, uncontrolled asthma (the uncontrolled part started when I believe I first got the mycoP...3 years ago) is much more under control. I have also started seeing a lung specialist (when they heard I had mycoP, they put me in with the "Senior" Lung Specialist, thank goodness. He has, unfortunately, found some possible scarring on my lungs...possibly from the long term mycoP.

 

So, long story short. The fact that your DS has (or has had) MycoP, is probably why he only seems to respond to azith. My guess is that you haven't gotten rid of all the mycoP and/or the antibodies (which is what the IgG is measuring...means you've had it in the past.) If his IgG is still elevated, that may answer your question. This is my opinion that it may be this, but it makes so much sense, particularly since we know from the Columbia mouse study that it's the strep antibodies that cause the symptoms, not necessarily strep itself, and given my history with mycoP, and azith, I suspect it's the antibodies still around that's causing me to not be able to wean down from the azith.

 

It is also possible there are other infections present...keep in mind that PANDAS is an auotimmune disorder, and the whole immune system is whacked out.