Back on Treatment Azith and Doing Better

[EAMom]

Will try Motrin/Arnica to support her body as we do that, in case the problem is inflammation. If anyone else has ideas for safe, proven anti-inflammatory support, please let me know.

 

 

Curcurmin is a pretty popular supplement among PANDAS parents. It is an anti-imflammatory and has many other benefits:

 

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[airial95]

Hey there - just glazed through the responses - but I'll add a few things I haven't seen pop up yet:

 

Omega 3 is a good supplement for inflammation. Dr. M at USF has cautioned against an O-3 supplement that has Omega 6 in it, as O-6 can actually cause inflammation in some people.

 

My son responded well to azith at first too - but each time we initially tried to take him off, within 3 days all of his behaviors came flooding back. Unfortunately - that was 3 years ago. The longest we have ever been able to have him completely off abx has been 5 weeks, typically his symptoms return b/c of another strep infection. They have been chronic with us (even while on full strength abx.) You may want to have her next swab cultured for resistance - it can tell you if possibly the strain of strep she is dealing with is azith resistant - which we have found a couple of times here in FL.

 

On the other end of the abx spectrum - my daughter (also PANDAS) clears completely with only a 30 day course of Cefdinir (allergic to pennicillin) and does not need to be on long term abx, but she has gotten strep a few times a year with her.

 

We did T&A for both of my kids. My son met the ENT's criteria for chronic strep infections (7+ in 12 months was all he needed to see!), however, my daughter was like yours, and didn't. However, the ENT went ahead and removed them as a precaution against the PANDAS specifically. My daughter has gotten strep since, but only 2x, vs. the 3-4x per year prior. My son also has gotten strep since (5x), however his symptoms are less severe than prior to the T&A, and the 6 weeks post op (also on Augmentin) was the 1st time since onset he was 100% symptom free - no OCD or anything.

 

We do CBT/ERP through the Rothman Center (they are local for us) - but we have not done the intensive program. For us, we used CBT first because my son was so young at onset (only 2). It was very important for us to be involved. A good portion of the initial therapy revolved around US and our reactions to his comulsions/anxieties. We learned that in younger kids, often times the compulsions relate to not something THEY need to do - but something the parent/caregiver needs to do in a specific manner, and we needed to learn how to handle that. It was helpful - but like others have said - during a flare, all bets were off.

 

One trick we have used with my younger PANDA (now 5) - was we named his OCD. He calls it "Harvey". This allowed him to identify that some of the "bad" things he did were not because he was "bad" - but because his OCD "Harvey" told him to do it. My 6 yo PANDAS daughter has also adopted a vocabulary to tell us when her OCD is acting up - she'll say she's "stuck". Allowing them a vocabulary to verbalize what's been going on has been extremely powerful. For example, after a rifampin boost b/c of another pos strep infection (while on Augmentin AND azith - told you he's bad), my son asked if we could go to the ped - where he continued to say "When I was on the Ryno (rifampin), Harvey went away. He's back now that I don't take the Ryno anymore - can I have some more Ryno so he goes away again?" No lie - my ped and I both looked at each other with jaws on the floor - he had JUST had his 5th birthday - and he was articulating to his doctor his needs. The strep test that time came back -, but the doc refilled the rifampin b/c for the first time we had hard and fast feedback from my son himself (not just my reporting behvaiors) as to what was happening.

 

Finally - if you don't already, keep a log or journal of her symptoms. I used a numerical scale (0-9) and kept a spreadsheet. Tracking the daily scores and trends helped us see improvement, what was/wasn't working, as well as how he reacted to exposure (strep in others but not him), as well as some key behaviors that were automatic "tells" that he would be positive for strep (ie - every time he wets the bed he's + for strep - like clockwork. Now, when he wets the bed, we don't wait - we go straight into the doc.)

 

Hope some of this helps. I too wanted to get my kiddo off abx as quickly as humanly possible - and I found that it just didn't work for my son that way - so keep an open mind to what's working/what's not. Remember - many rheumatic fever patients are kept on full strength abx almost their entire lives...