Back to square one? Is it pandas if it doesn't remit?

[eljomom]

Well, after another "teaser" few days where we thought the tics and ocd were decreasing, it's back to full body tics (shoulder-arm-hand-mouth-eyes-tongue....). She's been on steady Zithromax 100 mg/day for over 2 months. Doc says 100 mg "should be fine"---fine for WHAT?? prophylaxis for strep? or for treating underlying infxn?

 

Which brings me to my question---since her sudden jump from a couple tics to over a dozen this summer after a high fever (not strep) and 3 months close contact exposure (and infection at a couple points) to staph Impetigo, she has not been tic/ocd free at all. CamK was high (168). Antineuronal was high. (D1). So since Pandas is supposed to exacerbate and remit once an infection is cleared, does this mean she does not actually HAVE pandas, or that there is still an infection? She does not have myco.p, strep, or symptoms physically of anything else. I know, Lyme is out there, but Igenex was even negative.

 

Just feeling rather paralyzed again...spinning wheels.

Thanks for listening

[dcmom]

Eljomom-

 

I am going to answer your question in the context of pandas.

 

Oh- if it were only that simple! If pandas routinely and reliably remitted after infection cleared, I think the forum would be MUCH less active.

 

The reality is (for my girls) that the illness triggers an autoimmune response. Once this autoimmunity is triggered, it does not necessarily end when infection clears. My kids have both needed further intervention to tamp down the autoimmune component. They had pex, and have done steroid tapers.

[eljay1]

We have just recently begun treatment (about 2 months ago) and have been on zithro and now augmentin (plus steroid). After a year and a half, his tics and ocd are slowing down. He has never fully remitted. I have the same questions as you, and I think in my sons case, he has several different things going on in his body--not totally sure what they are, though. Wish I could help you more, but I feel your pain and burning questions!

[butterflymom]

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Edited February 3, 2016 by tampicc

[Kayanne]

Well, after another "teaser" few days where we thought the tics and ocd were decreasing, it's back to full body tics

 

I just want to point out that many parents have observed a "saw-tooth" healing with PANDAS. Improvements, then setbacks, over and over--with the net result being improvement.

 

Of course, I'm not a doctor, so I don't know if this is what is going on, but I thought I should at least mention that it has been observed.

[dcmom]

Kayanne-

 

I agree- it is very important to look at symptoms in an overall weekly trend- healing can be sawtoothed...

[Fixit]

jmho..chronic infection..what...idk

[LNN]

There are other tests that can indicate ongoing infection - C3d, C3a and C4a immune complexes, and re-checking strep titers. I'm sure there are others I'm not aware of. You say Igenex is negative, but where there any positives or indeterminates or was everything completely negative? When did you check myco p?

 

Saw your other post - yes, other things can elevate CamK, including but not limited to lyme. The anti-neuronal markers are hypothesized to be more specific to an autoimmune response, but the tests are not "proof" that elevations are caused only by auto-immunity to GABHS.

 

Your other option is to try the meds used for TS - sorry - don't recall if you ever have. Dr Cunningham has said that haldol should be a good option for some Pandas kids. Maybe see if you can find some of her publications that discuss this in greater detail?

[Christianmom]

My son had the same CaM K score (168) and my doctor said my son was "well in the PANDAS range" and that "this confirms a PANDAS-like condition." He seemed to have no doubts that my son has PANDAS.

[mommakath]

Sorry for your struggles! Do not give up hope!

 

Our Igenex and coinfection was also negative on my ds9. However, Dr. J ran testing and so far the Bartonella has come back positive. He firmly believes that my son has Lyme and said that some of the sickest kids test negative. We started the treatment and I see a huge change in my son this week. The old kid is finally reemerging.

 

I almost didn't go see Dr. J after Lyme testing thru Igenex negative. Then, after meeting him and hearing him, I sstill had my doubts. But, everything he said he thought they would find positive, has come back positive. He is even wanting to do tissue testing from upper GI we had few years ago chasing issues. He says he is sure it would also come back positive. The man is amazing and so far....he's been right on every time. Still awaiting a few test results but we're finally improving!!

 

If you have any other infection along with PANDAS, the PANDAS will not clear for any length of time without getting all of the underlying infections cleared as well (Myco P, lyme, tc....).

[chodnett]

our symptoms remitted maybe when first diagnosed with tourettes. By the time we found out it was PANDAS we had constant tics never better just sometimes were out of control. Over a year on AUGMENTIN XR and 3 HDIVIG tics are quite, not completely gone. Looking further into LYME. I have tested positive for 4 bands(CDC negative) But from what I have read the antibiotics are probably helping her the most, especially if it is LYME related. Makes me feel better knowing we didnt throw away a year of treatment doing the wrong thing.

[momofgirls]

Just my opinion but she must still have an infection with those kinds of tics. Were not talking about a little eye twitch as a residual symptom. I remember your daughter's igenex labs and as I said before, I think a good lyme doctor can help. If you need confidence to pursue lyme then they could bring it out with higher doses of abx for a bit then retest. The other thing as LLM as mentioned, imune complexes can hide the antibodies for which the western blot test resulting in a false negative. Has anyone tested for these?

[Worried_Dad]

Another vote for chronic infection or chronic exposure. Our ds's PANDAS symptoms also did not remit except after major treatments (like IVIG). Instead, he was more chronic, but each new flare took him even farther from baseline. Like your dd, our ds was on a "prophylactic dose" of augmentin (500 mg once a day) that didn't seem to protect him at all. As others can attest, a once-daily dose of this kind of abx is not effective; don't know about 100 mg of zithro, which seems low but has a longer half-life?

 

For us, though, we didn't see improvement until we increased the abx dose to treatment level: 1000 mg of XR twice daily. Been on that dose for > 1 year. For our ds, it's been magic, but it still took months for him to climb out of the pit PANDAS dug for him.

 

Another possibility that could complicate your dd's recovery - when we tested titers for our entire family as a precaution, we found that every one of us had elevated ASO despite no obvious symptoms of strep. A month of clindamycin brought our titers down, so it certainly appears that one or more of us were carrying strep. That constant exposure in the home might explain why our ds was "chronic" and didn't really remit. So - if you haven't already done this - might be worth having your family tested for infection?

 

Hang in there, eljomom. Find a doc who's open-minded and willing to keep trying things. Keep testing for various infections. You'll find the answers!

[monarchcat]

Along with what everyone else mentioned, I would question the dose of azith. My son started on azith 250mg/day when he was about 80lbs and it was not enough. He has been on 500mg/day of azith now since June and is doing better, but we still have started IVIG as well. And he still has tics.

 

My daughter has been on 100mg/day of azith since last spring because she had a sudden onset of OCD after strep. Because we treated it quickly (with full strength azith) she has no residual effects and the 100mg dose is purely prophylactic. If she were symptomatic I would insist on a higher dose.

[EmersonAilidh]

I'd only vote underlying infection if this hasn't been going on for a while. Another thing to keep in mind is that it seems to me when people think of P.A.N.D.A.S. waxing & waning, they think that the good days should be perfect. Twelve years into this, I can't recall a day where I've ever felt just "normal". Remissions aren't always COMPLETE remissions (if only, if only). Sad as it is to say, when we have our ups & downs the ups are hardly ever as high as the downs are low. That's a bit wordy but hope it made sense.

 

Autoimmune is another thing to keep in mind. I can't personally attest to this with 100% assurance, but us chronic kids don't ever seem to get close to normal. Antibiotics do seem to make us better, but not all the way. There is certainly still hope, but I think people waste a lot of time looking for underlying infections (which isn't to say it's not a good idea, don't get me wrong)! If it's an autoimmune process like we say, unless you started treatment right at the get-go common sense says that those antibodies wouldn't much care whether you have strep or not after a while. Just what I think!

 

I say "can't personally attest to this with 100% assurance" because I was GABHs positive for the first fourteen years of my life, so although I fully believe that current infections aren't nearly as important as others think they are, it could be argued that I was just infected the whole time. After two years of testing negative (& thinking in my head "THANK GOD!!!!" after each & every one) a nurse practitioner realized that my strep isn't making some weird enzyme now, so now I CAN'T test positive & there's no telling when I have it. I find it hard to believe that I've really just had strep for sixteen years that hasn't been cleared with any & all antibiotics, & that's why I'll vote autoimmune over underlying infection everytime.