started abx & things have gotten worse

[TracyRee]

ds had been doing good, but we finally found a doc that knows about pandas and started him on a trial of zythromax. (100mg/day, he's 44lbs so a low dose imo)

 

6 days into abx he's having constant rages.

 

any ideas?

 

of course i'll call the doc tuesday but wondered if anyone has any insight

[dcmom]

Tracy-

 

A couple thoughts:

 

Does your son have issues with the red dye in zithromax? You could try tablets, crushed- or dye free.

 

Maybe it isn't the antibiotics- maybe he was ramping up because of something else?

 

It took my dd 30 days on daily zithromax (200 mg for a 40 lb girl) to see any significant improvement during her first episode.

[smartyjones]

i don't necessarily have advice for you but i will tell you our story. last year, we discovered pandas for my then 4.5 year old. a behavior therapist suggested it. pediatrician was skeptical but ran titers - very high. did throat swab - positive. they prefunctorily threw him on a 5-day course of azith - i think only to CYA b/c he'd been in that office many times and they couldn't find anything wrong. i can't remember her exact quote but something like 'this will take care of the strep, he may just be a carrier, i think you'll find the behaviors and the strep unrelatd. no need to further worry or investigate strep."

 

that 5 days was horrible! all pandas behaviors intensified and some that had left returned. he was incredibly clingy and whiny - hiding behind my legs when my dad & stepmother were at our house who he is normally close and comfortable with. i was so happy for it to end but of course, was unsure what to do. he was better off the azith but we still needed some treatment. we switched peds, the new one put him on a 30-day course of keflex and thought he may have a sinus infection, which was confirmed with CT scan.

 

about 3 days into that keflex, he was 100% back to pre-pandas. he then backslid when off that, but that's a different story.

 

so, many/most have great experience with azith - we did not. i don't know why. he had previously had reactions to 2 abx, i now believe omnicef and amoxicillin - at the time of keflex, we thought it was a penicillin allergy. has your son had any adverse reaction to any med?

 

good luck.

[dut]

Hello

 

Our dd also ramped up during her 1st abx and for us it was just that we were already ramping and had to wait for abx to kick in BUT...

 

Dr T asked if we had been Lyme tested 'cos when kids with Lyme's (which can present similarly to PANDAS) start on abx they often get a die off reaction called herxheimer. This actually makes symptoms worse until the die off levels again.. dunno.. just a thought.

[GatsMom]

Hello

 

Our dd also ramped up during her 1st abx and for us it was just that we were already ramping and had to wait for abx to kick in BUT...

 

Dr T asked if we had been Lyme tested 'cos when kids with Lyme's (which can present similarly to PANDAS) start on abx they often get a die off reaction called herxheimer. This actually makes symptoms worse until the die off levels again.. dunno.. just a thought.

 

I was just thinking the same thing while reading the thread, could it be a herx reaction? Treating candida with antifungals, as well as abx for Lyme, can cause that "healing regression" or herx.

[faith]

tracyree,

did he ever have that before? the rages? how did he do the first six days, or did it start right away? What part of the country are you in?

 

I will add here that I don't think my son did well on azith either. I did about 10 days and didn't see anything remarkable, and had two days inbetween filling the next script that he didn't get a pill. I actually thought he did better on those two days. not wanting to break the trend, I got the next refill and gave him the next pill. the next day his vocal was off the wall increased, no exaggeration. I then didn't give him the next pill and he was calmer the next day. so for now we are off abx until I try another one.

 

 

Faith

[TracyRee]

Thanks everyone, you've all given me lots to think about

 

yes, rages are how it presents with him. He had so many today, I'm exhausted. Anything rubs him the wrong way and he shakes his fist at me and starts shrieking "I hate you!!!". Over and over.

This from a kid who is so gentle and sweet. He isn't a rough and tumble boy by any means, very mild mannered most of the time. These rages are horrible. It hurts so much to watch him so put of control.

 

I had thought about the red dye, I'll definitely ask for dye free next te

 

he was on zythro about a month ago and did sooooo well on it, so I don't think it's the dye. Limes disease may e, but again, he was on zythro recently.

 

Thanks again everyone. It's so hard parenting him through this. I miss my little guy.

[motherofamichael]

My son (now 12 and with PANDAS since a baby) has had many problems with sinus fungus and GI yeast as result of abx. Abx can increase the yeast / fungus reactions. We had to do a couple of courses of diflucan, followed by oral nystatin until he cleared - then we We found it best to do acidophilus regularly before, during, and after abx, and to do a dose of diflucan half way through the abx. treatment. I still request a diflucan script with all abx scripts.

[matis_mom]

Just in case, I would check to make sure that no one else in the house has strep. We had it the first week of steroids and I could not figure out why ds seemed worse instead of better, until two of his sisters tested + for strep! So check that out first.

 

There was a threat a while back about yeast, and how it brings on rages, giddiness, clinginess, inappropriate behaviors, etc... that's another possibility.

http://www.latitudes.org/forums/index.php?...pic=4748&hl

 

Also, check this topic on Zithromax toxicity...

http://www.latitudes.org/forums/index.php?...pic=6367&hl