Don't know what to think

[Hayley]

As some may recall, we had a doctor put my daughter on five day off, five on Azithromycin. We got her back on (only with a five day dose though we are working to get our pediatrician to extend it) Thursday night (so she was off for about 60 hours). She was pretty good friday and yesterday morning, but then went to a party where she had some anxiety and it set her off for the rest of the afternoon/evening. We felt very discouraged because we really thought she was making progress (we hadn't had emotional lability/rage since the prior Sunday and even that was mild. She had an awful evening and woke up at about 5:30 this morning very agitated. She snapped out of it by 7AM or so after having a little something to eat and seems pretty good for the moment. So...a couple of questions,

 

When making progress on an antibiotic, do you still have bad days? SHe had some stressors yesterday afternoon that seemed to exacerbate the symptoms and this morning (obviously since she was up at 5:30!) she was tired. We generally do notice the emotinoal lability is greater when she is tired or hungry, but in the back of my mind I wonder if maybe the antibiotic isn't working afterall.... Any feedback would be appreciated. Thanks!

[LaurenK]

Yes, very saw tooth. At about 3 months is where I get to a consistent 90%.. one month consistent 80%.. before that very up and down. That's with IV steroids. With abx, i'm immediately better within two or 3 days. Doxy and zith are the best combo. no up and down with that.

Edited August 26, 2012 by LaurenK

[beeskneesmommy]

Our specialist told me that the "on/off" administration for abx can cause further problems. He feels that this can cause the immune system and the antibodies to "disconnect", furthering the autoimmune process. Consistent, steady levels of abx is necessary for treatment. When my son went on Azith for 5 days, I would see an improvement, then after he finished, he would go down hill again. Although it took about 2 weeks, Azith administered on an ongoing basis brought him back for months until another Strep infection managed to get thru. It is not always a permanent fix unless you start very early, and even then it may not be. However, it has helped immensely and our son is further along than he has ever been at this point. We are still going for IVig, however, because PANDAS started very early and went untreated for some time during his early years. If I have one strong piece of advice for you it is to get in ASAP with one of the known specialists in the country. There is a 2+ wait list, so make that appointment if you haven't already. A pediatrician, although he/she may have great intentions, is often not educated in the area to the extent that your kiddo needs.

[MomWithOCDSon]

Our DS was on antibiotics straight . . . not pulsing or on and off . . . for nearly 2 years. And for at least the first 9 months, we saw a lot of "saw-toothed" behavioral trends: improve, then regress, then improve, then plateau, then improve, then fall back, then plateau, etc. Despite our attempts to tie the regression periods to exposure to strep, a cold, allergies, etc., we couldn't always do that.

 

In fact, during the first 3 or 4 plateau periods, we thought maybe the abx had done all they could do, and we decided to take DS off. BIG mistake! He would then start a regression within 8 days of being off the abx altogether, and his old behaviors would return, one after the other, until we started the abx again. And then, each time, it took a little longer and a little for the abx to turn back the behaviors again, every time we went back to them.

 

If at all possible, I would seek a way to stay on the abx consistently, rather than this 5 days on, 5 days off, stuff. Since azith has a long half-life (I think it's something like 76 hours), you might even be better off doing one day on, one day off, consistently, if your doc will not prescribe for daily use. From our experience, though, the 5 days off plan is not a great idea.

[smartyjones]

i did notice in the past with my son -- and i recall discussions on this forum -- about likely flutctuating blood sugaar levels being problematic. not to the serious level of diabetics, but i recall discussion from many parents noticing some correlation and trying to be sure to have snacks handy

 

.

since you mention noticing this, i'd try to keep snack nearby to try to help even things out as you are figuring it all out.

[EAMom]

As some may recall, we had a doctor put my daughter on five day off, five on Azithromycin. We got her back on (only with a five day dose though we are working to get our pediatrician to extend it) Thursday night (so she was off for about 60 hours). She was pretty good friday and yesterday morning, but then went to a party where she had some anxiety and it set her off for the rest of the afternoon/evening. We felt very discouraged because we really thought she was making progress (we hadn't had emotional lability/rage since the prior Sunday and even that was mild. She had an awful evening and woke up at about 5:30 this morning very agitated. She snapped out of it by 7AM or so after having a little something to eat and seems pretty good for the moment. So...a couple of questions,

 

When making progress on an antibiotic, do you still have bad days? SHe had some stressors yesterday afternoon that seemed to exacerbate the symptoms and this morning (obviously since she was up at 5:30!) she was tired. We generally do notice the emotinoal lability is greater when she is tired or hungry, but in the back of my mind I wonder if maybe the antibiotic isn't working afterall.... Any feedback would be appreciated. Thanks!

 

what dose was your dd getting on the "on" days, and how much does she weigh?

Edited August 26, 2012 by EAMom

[Hayley]

As some may recall, we had a doctor put my daughter on five day off, five on Azithromycin. We got her back on (only with a five day dose though we are working to get our pediatrician to extend it) Thursday night (so she was off for about 60 hours). She was pretty good friday and yesterday morning, but then went to a party where she had some anxiety and it set her off for the rest of the afternoon/evening. We felt very discouraged because we really thought she was making progress (we hadn't had emotional lability/rage since the prior Sunday and even that was mild. She had an awful evening and woke up at about 5:30 this morning very agitated. She snapped out of it by 7AM or so after having a little something to eat and seems pretty good for the moment. So...a couple of questions,

 

When making progress on an antibiotic, do you still have bad days? SHe had some stressors yesterday afternoon that seemed to exacerbate the symptoms and this morning (obviously since she was up at 5:30!) she was tired. We generally do notice the emotinoal lability is greater when she is tired or hungry, but in the back of my mind I wonder if maybe the antibiotic isn't working afterall.... Any feedback would be appreciated. Thanks!

 

what dose was your dd getting on the "on" days, and how much does she weigh?

 

She weighs 54 lbs. She was initially on 6.25 ML @ 200MG/5ML so I guess that's around 250? When she just got bumped up (starting THursday night) we increased to 7ML at the same concentration. Thanks all for the thoughts and feedback. I'm scheduled to talk to my pediatrician on Monday and hoping to get her to adjust the rx until I can get to Latimer. Worst case scenario, I have a phone appt. with Dr. T. on Thursday and am hopeful that he can either rx or advise my pediatrician to do so. I'm hoping that there will be enough in the bottle to do at least one extra dose and if not, may be able to get the script renewal which was for at least several "maintenance doses" she is supposed to be taking every fifth day after we run out of the current prescription. If I can get even two of those doses in hand, I shoudl be able to stretch this out until I talk to Dr. T!

[EAMom]

WHen our dd's pandas was severe in 2nd grade, she was 43 pounds (anorexia)...we did Azith. 250mg/day every day (she is still on it 4 years later).

 

I think if we did 5 days on/off it wouldn't have been as effective. She really needed the daily dose, and even then it took time.

[kos_mom]

Hayley.

Good to take the precaution of a phone consult with Dr. T. As you know, we too are waiting on Dr. L, but will see Dt. T on Tuesday to tide us over. I hope your pediatrician will agree to the abx, but even if he/she does, I think you will find it useful to to talk to Dr. T. He may order a lot of tests--getting these could put you in good shape for Dr. L.

Ko's Mom