Azith

[Megs_Mom]

Our daughter, age 9, 62 lbs, is on an alternating dose of Azith - 250 mg daily each month for 3 days, then down to 100 mg every other day for 25 days. It's worked well for her (she had 2 weeks at 250 initially), but she had a few days of breakthrough every single month, towards day 22 - 28. Either she gets some kind of mild infection & it is worse, or it's just a mild blip that we can deal with using Motrin and ERP. If she gets an infection (ear usually) then we just move the full dose up & she is fine in 3 days. She communicates really well, so we are on top of infection unlike in the past when we were not hyper parents about bringing a doc into the mix for a cold, etc. Generally these last only a few days - and compared to the darkness of an exacerbation, are usually not worth worrying about. But no way could we pull her off the Azith.

 

History - she is severe sudden onset OCD at age 3.5 (azith for ear infection, remission in 2 weeks, 100% on OCD, 90% on sensory), 6.5 (untreated remission after 3 months - at 70-80%) and 7.5 (2 spikes in close proximity, 80% remission for one week of Pred burst, finally treated with Azith after 3 months, 99% remission after 2 weeks, held for one year). Sensory integration disorder, OCD (lot of kinds), Agoraphobia, Panic Disorder, Sep Anxiety and Eating Issues.

 

We are now at the one year mark without a severe exacerbation. She is a happy kid (except for needle phobia and baby talk that now seems to be a habit - she can talk regular, but forgets a lot. But these blips are just driving me nutty, as it seems clear that the Azith is helping her on a monthly basis, rather than being preventative. She is in remission, it just seems fragile. We have Prednisone in the fridge, but have never used it over the last year. Our immunologist wants us to use the Prednisone, and keep the abx at the lower level.

 

So we are going to see Dr. L in a few weeks, and I am thinking a lot about what might be going on. I wonder if your body can build up a tolerance to the Azith - I would not want to lose this as a tool - this thought argues in favor of staying at a low level, since it is such a miracle drug for us. But I'm not sure the resistance argument is true. Or should we be asking for an increase in her dose for a few months or longer? I know a lot of people here are at 250 daily, and wonder if you also need a regular increase - in other words will I see the same pattern of needing to increase periodically just with a higher base?

 

We will also get the Igenex test signed for at this appt, and suck it up for another blood draw (nightmare of our life!), and ask for Parvo and Myco testing, just in case, while the darn needle is in there.... Probably take another month to get it done. Ugh.

 

Thanks for your thoughts.

Edited October 13, 2010 by Meg's Mom

[Kayanne]

I'm wondering if you have done anything more aggressive to address the recurrent ear infections? Tubes or testing for allergies?

 

I know my daughter seems to have a lot of baby talk, and I do think the PANDAS caused it, and then it became a habit -- I was reminding her a lot to speak normal.

 

I don't know about your body building a resistance to azith...I suppose it is possible. Can you clarify: Is Meg getting breakthrough infections at the end of the monthly high dose AND at the end of the month of low doses or is it just at the end of the month of 100mg every other day?

[EAMom]

Could it be the dose is just too low? I think a 62 pounder should be on at least 250mg/day Azith. I would even go up to 500mg/day if there is a flare.

Edited August 13, 2010 by EAMom

[Megs_Mom]

Could it be the dose is just too low? I think a 62 pounder should be on at least 250mg/day Azith. I would even go up to 500mg/day if there is a flare.

 

I almost just PM'd you about this! That is the direction that I am leaning - asking for a higher daily dose and be done with it. My suspicion is that the initial 3 days of each month builds her up enough, and then as we near the end of the month, that the amount in her body is too low to keep up with inflamation, and we see a mild breakthrough. I am just curious as to whether kids that are 250 also see breakthrough OCD on a regular basis or not. My gut is that they do not, and that they need to raise the strenght on a more regular basis. Or maybe I just keep way too many charts . But this one is now pretty clear.

 

So I think I'll ask for the higher prescription - it sounds like that is becoming more common than when this first started for us.

 

Thanks for the response!

[Megs_Mom]

I'm wondering if you have done anything more aggressive to address the recurrent ear infections? Tubes or testing for allergies?

 

I know my daughter seems to have a lot of baby talk, and I do think the PANDAS caused it, and then it became a habit -- I was reminding her a lot to speak normal.

 

I don't know about your body building a resistance to azith...I suppose it is possible. Can you clarify: Is Meg getting breakthrough infections at the end of the monthly high dose AND at the end of the month of low doses or is it just at the end of the month of 100mg every other day?

 

Hey - yep, full allergy testing (nothing), immunological testing (nothing), testing for lupus (high ana, finally declining with abx therapy - odd - no other signs of lupus), pretty much all else you can imagine, except Lyme (on the schedule).

 

Took out her adnoids, put in tubes, use swimmers ear drops, attack ear infections early in the process.

 

Each month is same level of azith - each month is similar pattern of breakthrough - worse if an infection, but some breakthrough either way, just for a few days till abx is raised. Not a huge deal to her life, but clearly a pattern that I'd like to break. 100% sounds greedy, but it would be lovely.

[dcmom]

Hi Meg's mom

 

My daughter Caroline (about the same size as Meg) is on 300mg of zith per day. So far (5 mos) she has only had two flare ups. One lasted about 2 days and was linked to strep exposure, and one now that I am linking to the loss of two teeth. I haven't noticed that increasing her (or her sister's) dosage of zith has helped the flare ups. I do go for the pred if needed. Due to Coco's post, and our recent experience- I plan to ask Dr L about the possibility of trying shorter doses of pred for these flare ups.

 

My younger daughter Julia is on 200mg/day. She is smaller. She has been in "remission" for over 10 months with some flare ups along the way. These have always been linked to strep exposure, and one time to the flu. There is no other pattern. I have increased her to 400mg for about 4 days with no clear improvement. The flares due to exposure go away quickly once the exposure is over. We did prednisone for the flare up (which was looking more ominous) after the flu.

 

It is all so confusing, esp since even the docs don't REALLY know what is going on. It certainly couldn't hurt to experiment for a few months at the higher dose and see if that stops these breakthroughs. I also like the idea of a few days of pred- would that be every other month? And if that would bring her to staying at close to 100% consistently- I think it is worth it.

 

Good luck- let us know what you decide...

[dcmom]

Hi Meg's mom

 

My daughter Caroline (about the same size as Meg) is on 300mg of zith per day. So far (5 mos) she has only had two flare ups. One lasted about 2 days and was linked to strep exposure, and one now that I am linking to the loss of two teeth. I haven't noticed that increasing her (or her sister's) dosage of zith has helped the flare ups. I do go for the pred if needed. Due to Coco's post, and our recent experience- I plan to ask Dr L about the possibility of trying shorter doses of pred for these flare ups.

 

My younger daughter Julia is on 200mg/day. She is smaller. She has been in "remission" for over 10 months with some flare ups along the way. These have always been linked to strep exposure, and one time to the flu. There is no other pattern. I have increased her to 400mg for about 4 days with no clear improvement. The flares due to exposure go away quickly once the exposure is over. We did prednisone for the flare up (which was looking more ominous) after the flu.

 

It is all so confusing, esp since even the docs don't REALLY know what is going on. It certainly couldn't hurt to experiment for a few months at the higher dose and see if that stops these breakthroughs. I also like the idea of a few days of pred- would that be every other month? And if that would bring her to staying at close to 100% consistently- I think it is worth it.

 

Good luck- let us know what you decide...

[coco]

I would experiment with the higher dose to see if it makes a difference and add in some short pred bursts, just to see how many days it takes for her to settle and hold. We have had good luck with this...it's not perfect, but it makes a big difference for my dd. In fact, Dr B said my dd was one of his really tough cases and that we would not let her get too far away from baseline without intervening. Whatever it takes to help is my mantra. Good luck!

[Megs_Mom]

Quick update - we did get the increase to 250 per day. We have been doing this for about 3 weeks now, and so far - she is as consistently close to 100% as I have seen. She even told me tonight that "sometimes I forget I have OCD, mom". That is a pretty amazing thing. I'll keep you all posted, but we are not seeing the breakthrough OCD that normally would start right around this time of month. I'm keeping my fingers crossed - she is not sick either, so I'm sure that helps.

 

She is a very happy kid right now.

 

We'll keep this up for a few months and then see if we can dial it down slowly - but so far, I am feeling very affectionate towards Azithromyacin.

[peglem]

Quick update - we did get the increase to 250 per day. We have been doing this for about 3 weeks now, and so far - she is as consistently close to 100% as I have seen. She even told me tonight that "sometimes I forget I have OCD, mom". That is a pretty amazing thing. I'll keep you all posted, but we are not seeing the breakthrough OCD that normally would start right around this time of month. I'm keeping my fingers crossed - she is not sick either, so I'm sure that helps.

 

She is a very happy kid right now.

 

We'll keep this up for a few months and then see if we can dial it down slowly - but so far, I am feeling very affectionate towards Azithromyacin.

That's about the coolest thing I've heard all month!!! So happy to hear!

[EAMom]

I am feeling very affectionate towards Azithromyacin.

 

I've never heard it put that way!

 

[MomWithOCDSon]

Meg's Mom --

 

Regarding recurrent ear infections . . . our DS had the same problem for many years, though the tubes helped dramatically.

 

Just wondering if you've ever considered chiropractic adjustments in response to heading off the infections? Beginning at about age 2, when we could see our DS beginning to get congested, or a cold was going around or whatever, I'd take him to a kid-friendly chiropractor. I would lay down on the table, and lay him on top of me, and the doctor would gently adjust his neck and shoulders. Inevitably, that adjustment would help his drainage be more effective; before, he was almost ensured of getting an ear infection on the heels of any cold or allergy attack because his ears' ability to drain naturally was so poor.

 

I'm also a big fan of guafenesin, found in many over-the-counter congestion rememdies. It really thins out the mucus and makes it easier to drain. Though, now that I know about NAC, I think it has the same properties, without all the bitter taste of the liquid guafenesin.