Question re: Antibiotic combo

[T_Mom]

I really need some viewpoints on this today--

 

Our d currently is up and down with a severe episode. After a great year last year, she started ramping up in the fall, with anorexia issues.

Her eating issues got worse, and she was almost hospitalized. She was also ticcing.

 

Did IVIG in Oct. and 6 weeks later she started eating again, like lightening had struck.

After 4 weeks her weight was restored and she eats well now (though still rigid at times.)

 

However in Dec. after exposure to illness in family members she started OCD-ish raging with infrequent ticcing (a few times a day.)

 

The OCD/ODD behaviors have continued. She is now unable to go to school (this past week) and raging to the point of serious issues for no apparent rational reason.

 

She has been on Azithro 250 mg (88 lbs now) for over a year. The doctor just added Augmentin XR 1000 mg once a day. *(We thought we were supposed to stop the Azithro and just do the Augmentin XR, but after 5 days of uncontrollable screaming and raging we realized that no, we were supposed to be adding the Augmentin to the already prescribed Azithro.)

 

She has been on BOTH now for only 2 days -- HELP, any thoughts on this -- thanx

Edited March 1, 2013 by T.Mom

[LNN]

I'm so sorry. You've been thru way more than any mom should have to cope with. Any changes in the past two days - better or worse? Any blood work clues? Azith+augmentin didn't do much for us, but DS was a lyme story. So my experiences with combo abx is with lyme not strep.

 

Given the anorexia history, have you ever looked at zinc/copper balances? Excess copper can cause mercurial temper issues and zinc deficiency can play a role in some cases of anorexia. Just tossing out ideas - and cyber hugs.

[sf_mom]

I agree with the anorexia history you could have Zinc/Copper ratios that are off, a heavy metals issue or both.

 

Here is a couple quotes from an article on copper/zinc ratios: http://www.tvernonlac.com/copper-toxicity.html

 

"Copper gives a temporary boost to an exhausted system so cravings for high copper foods such as coffee, chocolate, avocados, shrimp and lobster, soy and fruit are very common"

 

"Copper is a common element in many foods and so being able to excrete it normally and regularly is a more important concern. A zinc deficiency will impair the ability to excrete copper. Copper deficiency usually only occurs with severe malnourishment as in anorexia"

 

I have two children with high copper, lead and potentially mercury levels. My DD had self regulated to a vegan diet (mostly carbs) but loved avocados. My DS had self regulated to mostly carbs, no veggies, some fruits and would only eat shrimp as protein. The above comments really hit home for me after finding heavy metals issue.

 

However, it is also very possible you are experiencing a die-off response to current antibiotic protocol. We also experienced raging in younger DS when combo'ing up specific antibiotics. This particular child raged almost within 24 hours of starting new combination. It took several days to calm down as well (we gave a ton of advil during these months and typically when rage was starting). Then we would get reprieves between rages of a couple of days. Then he'd have a rage every 7 days like clock work. Each rage eventually got shorter and had less intensity. Eventually, he worked through them all but it took about 5 months on this specific antibiotic combination. He has not had a rage since and over all is greatly improved. It was a difficult time, we were in close contact with our Dr. and made the choice to push through this particular symptom. This was by far the most extended herxhiemer response we experienced throughout treatment. Most would not pushed through given the symptom but in between the rages we could tell he was better..... in the end holding steady worked. THIS IS JUST OUR EXPERIENCE and I am often conflicted about when to push through and when to stop.

 

Hope you get a break in symptoms soon.

[norcalmom]

I always use 2-3 days of Advil every 4-6 hours to get through the bad days. It may not pul you out of full on exacerbation, but if may take the edge off until things start to swing in a different direction, or the die-off fromt he antibiotics has passed.

[T_Mom]

Thank you for the comments and ideas. I will think about each of them.

 

I believe we did test copper levels but will definitely double check. All else came back negative.

 

I am hoping and praying that the two antibiotics will have the desired effect, and if things go as they have in the past, we should see it within the next couple of days, I really pray so.

 

It is the wait-and-see of PANS that "takes the stuffing out of you", (and I am just about as empty of stuffing as I can get.) It is like a repeat of the horrible nightmare from two years ago, complete with her remembering and referencing issues from back then even--how weird is that! After a fully good year+, and now this...

 

I wish we could get her to take Advil, she was refusing any pills (only Azithro and Augmentin, vit B12 and D right now!)...but finally is taking the two abx, but refusing anything else for now.

 

Thanks again.