Azith:study re: PANDAS? 5 on/7 off?

[thenmama]

Our ped has changed our kids to Azith--apparently she'd seen something just recently--an article or published study-- about using Azith for PANDAS. We are getting better results so far. BUT, they're currently prescribed a 5 days on/ 7 days off cycle and they are backsliding some during the 7 off cycle (for ds the backslide starts sooner and is to a greater degree than w/ dd). They did 2 courses like this in early May for an acute illness and backslid afterward. We're now only on the first "off" week of the first course of the cycle since we made the change to Azith for their primary abx.

 

My questions:

1) Could this be something that might work itself out over a few courses since it often takes more than one standard course of an abx to address the PANDAS symptoms?

 

2) Does anyone know of the article or study or whatever it was our ped saw--is it new? Wondering if I missed something published more recently?

 

3)Does anyone know if the PANDAS docs have a protocol for Azith that they like or find most effective for PANDAS kids? If so, would you mind sharing --either in this thread or PM? I'm not sure if our ped is using a prophylactic or treatment protocol and if that may be the issue--since ds definitely needs treatment dose, dd probably ought to be on treatment dose for a while since she's a little up from baseline still. Current dosage: ds (8 y.o., 50 lbs) 250 mg 1/day x 5 days (then 7 off) dd (13 y.o.,103 lbs) 250 mg BID day 1, 1/day on days 2-5 (then 7 off).

 

4) Anything else? Someone here always seems to think of something I haven't

 

TIA!

 

 

[Hayley]

I don't know about the protocol in the study, but my daughter was originally put on 5 days on 5 days off Azith. last August. We saw only very modest improvement in any event and definitely backsliding on the days off. We had reached out to folks on this forum and got a lot of feedback that this does NOT work for PANDAS kids. We talked our pediatrician into giving us daily dose until we could get into Dr. T & Dr. L and with that we saw less up and down, but still only modest improvement. In our case we didn't see real results until we got her on Augmentin so it's possible that the 5 day on, 5 off wasn't as much a factor as Azith just not being the right abx for us.

[peglem]

My daughter was on the 5on/7off dosing for awhile, several years ago. (5 or so) Definitely saw backslide on the offs. Switched it up to daily and did better. I don't know of any published paper, but our ped must have saw it too!

[Teri]

Hello friend,

 

I don't know of any study ... Just speaking from our own experiences here. When our Dd then 5 had her initial onset of PANDAS symptoms our awesome Pediatrician immediately suspected PANDAS. She ran bloodwork and despite negative swabs Dd's strep titers wer sky high. She initially prescribed Azithromycin for 30 days with a schedule of on 5 days/ off 5 days bc the Azithromycin stays in your system during the off days. Dd is allergic to penicillin. We saw improvement immediately - tics went away. However as soon as the 30 days was up we saw symptoms come rushing back. We begged for renewals on the Azithromycin which she reluctantly gave us. Dd began to show symptoms during the off days. We started to give Dd abx everyday to see if it mad a difference. It did! Within 2 months of starting the abx we knew we needed to seek out a specialist and needed more aggressive treatment.

 

Within 6 months of onset we traveled to see Dr. B. he put Dd on Azithromycin 200 mg daily which she stayed on for 14 months. He told us it was not good have her on and off as the infection rages back when they are off. She is now on a combo of Cefnidir / Cipro/Rifampin daily as we are also dealing with mycoplasma,Lyme, & Bartonella infections in addition to strep.

 

So I guess what I am saying is be aware that most Pediatricians are going to treat cautiously and may not have the expertise to address PANDAS.

 

Hope this information is helpful! Good luck!

 

Teri

[philamom]

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Edited June 16, 2013 by philamom

[tpotter]

Maybe Dr. Murphy's study? I don't know if it's out yet, but I do know she was doing an azith trial.

 

I've never heard of pulsing azith. I guess I understand the doctors' perspective...it's supposed to be given for only 5 days...BUT....PANS is a whole different ballgame, basically chronic infection that needs to be treated completely, AND it's also an anti-inflammatory. Doctors are quick to say not to stop abx treatment too early or the bacteria can become resistent, and if pulsing like that, you are giving the bacteria an opportunity to fight back. Standard practice is to give the abx for a long, long time (many PANS docs are treating like they would with rheum. fever...for years. Even my pulmonologist told me to stay on azith twice a day, because of it's anti-inflammatory effects (and he's not even slightly PANS savvy), because I have chronic mycoP, and he has no clue what to do for it (but when I stop or decreased my dose, I get worse.)

 

I don't know if your child has strep, but I would definitely look for other infections, too, particularly lyme, bartonella, babesia, erlichiosis, mycoplasma pneumonia and viruses. These are stealth bacteria and can hide out. They can cause severe damage over the years, and they are particularly difficult to eradicate when a person has immune deficiencies (which our kids tend to have). Also it's easier to get more than one infection when the immune system is bad.

 

Right now, we are waiting to see if my 20 yo son's heart problems, for which he just had open heart surgery, were caused by infection, including bartonella and strep. Keep in mind that lyme and co-infection blood tests are notoriously inaccurate, so if your child is having difficulty getting well with standard PANS treatment, and/or your gut is telling you that it really might be other infections, too...then follow your gut. You don't want to find out later that you were wrong, and did nothing at the time.

[peglem]

When my doctor did the pulsing, his rational was to give the gut a chance to recover flora in between abx.

[tpotter]

When my doctor did the pulsing, his rational was to give the gut a chance to recover flora in between abx.

Did pulsing work for you?

[peglem]

 

When my doctor did the pulsing, his rational was to give the gut a chance to recover flora in between abx.

Did pulsing work for you?

No.

[LNN]

A good friend of mine has been pusling zith with her Pandas DD for 2-3 yrs. For the first week of the month, they do M/T/W/Th/F/Sa then for the next three weeks they do M/W/F/Su. Repeat. Zith has a half life of 36 hrs, so this schedule keeps the zith in the system all the time. During mild flares, she'll do 5 days of zith daily, regardless of where they are in the month. Has worked very well for them. I think this sort of pulsing schedule makes more sense than 5 on 7 off.

[thenmama]

Thank you all so much for the helpful replies!

 

I think Azith working for the kids when they're taking it is probably a clue. They backslid significantly in the off week, and results in the 5 days on the abx were pretty dramatic. My ds also responded pretty well to Bactrim.

 

We had a complicated, ugly situation with our insurance that impacted our approach to the kids' care, so our ped has been handling their medications while we sorted that out. I'm calling this morning to get them appointments w/ the PANDAS doc asap, but it could be a while b/c they're so busy. In the meantime, the info you all shared should really help, because I can share it with our ped and we can make adjustments while we wait.

 

Thanks a million!

[tpotter]

I would suggest, then, that you have your pediatrician call Dr. Tanya Murphy's number to contact, since she has been doing a clinical trial using azith.

[thenmama]

Thanks for the suggestion-- I will do that!

[thenmama]

I haven't heard back from our ped about changing the dosing so we're no longer pulsing, but wanted to update that after the second day of taking it again, ds is like a different kid--so much better! It's so amazing to see him back to himself like this (and it's happened after only a couple of days each time he's been on it). We have to keep it going. And dd, who's more stable overall and had a less dramatic backslide, is also feeling better.