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

[momofgirls]

Emerson, I respectfuly disagree. I am not suggesting that you have had strep this whole time but are you not positive for lyme disease? An infection like lyme would prevent you from going into remission. I don't know about getting to 100 percent either but a longer period of remission may be attainable without a chronic infection like lyme, mycoplasma, bartonella etc... Also I think sometimes these kids do carry chronic strep even for years if they have something like lyme making it harder to clear. Many kids on this forum have had elevated titers so stubborn to resolve and later went on to find lyme.

 

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.

[EAMom]

eljomom,

 

how much does your dd weigh? Our dd was on 250mg/day azith even when she was 43 pounds. Maybe 100mg/day is fine for a non-pandas child...but IMHO PANDAS kids don't have a "normal" immune system against strep, they require higher doses of abs, for longer periods of time.

 

If the higher dose of azith (and possibly a switch to another antibiotic, like augmentin) doesn't work, then it may be that there is something else going on (other infection, like lyme) and/or it is time for IVIG (or pex).

[Malke]

This is a really fascinating thread and I've been really interested reading everyone's thoughts. Emerson, you've helped me clarify what my approach is even though I'm only four weeks into this with my dd5. We are starting to look for docs to help us track down underlying infections -AND- I am, at the same time, doing everything I can to figure out how to heal the autoimmune component to this PANDAS-like issue. Either way, the body is sick and needs help building back up through proper nutrition, specific supplements, and other healing modalities other than 'medicine'. I think the two can work together quite nicely.

 

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.

[SSS]

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

 

 

Hi- not sure this is related, but maybe. I just got done watching Dr. T's Autism One 2010 DVD presentation- loved it, it was my favorite. He has treated a LOT of PANDAS patients, and explained different categories/presentations in these kids-

one that struck with me, because it relates to where I feel we are: some of these kids have it more chronic (because it has been untreated for so long? That would be our case) instead of more wax/wane. He also said about 'exorcist episodes' where the child completely loses it, violent, harm to themselves and others, the 'cursing' it is very scary to see- Like a switch on and off, after it's over, the child appears totally okay.

This is exactly where we are at right now, what my dd5 is doing- and it's 'bad.'

He said these kids, drugs are not going to work. They need to have their immune systems re-set/IVIG (*Now this is what I took away from the DVD, what he said*)

Feel better about getting our 1st (pray last) IVIG on Monday.

He also goes through a PITANDS explanation--I though this DVD was excellent and explained quite a bit- and he talks about testing for underlying other co-infections.

 

So, in your case, maybe your dose of antibiotics is not 'tapping down' the immune system. Perhaps a 4-5 day steroid burst might be worth a try.

[EmersonAilidh]

That is definitely a good point. I have P.A.N.D.A.S. symptoms that came before the Lyme & have a pretty good idea of what is P.A.N.D.A.S. & what is Lyme because of that, but the Lyme could definitely be worsening the P.A.N.D.A.S. symptoms. Before the Lyme (infection, not diagnosis) we never had a 100% remission but it was certainly better. Thank you for bringing that up. <3

 

Emerson, I respectfuly disagree. I am not suggesting that you have had strep this whole time but are you not positive for lyme disease? An infection like lyme would prevent you from going into remission. I don't know about getting to 100 percent either but a longer period of remission may be attainable without a chronic infection like lyme, mycoplasma, bartonella etc... Also I think sometimes these kids do carry chronic strep even for years if they have something like lyme making it harder to clear. Many kids on this forum have had elevated titers so stubborn to resolve and later went on to find lyme.

 

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.

[eljomom]

mommakath---just curious why you pursued Lyme if there were no positives on Igenex?? Did your son have other physical symptoms too?

 

 

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....).

[eljomom]

WorriedDad---I agree....our pandas doc sent us to I.D. doc when I asked about testing the family...this was at our 3rd visit...I.D. doc said there's no point....so getting someone to test is an issue!!

 

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!

[eljomom]

EAMom--dd weighs 45 pounds. I truly feel that strep is NOT an issue right now. She was on a month of Augmentin (treatment dose) before the Zithromax, and I feel confident that would have treated any strep. And she has no different symptoms physically or behaviorally.

I feel like chasing around different abx for an autoimmune disease is like giving ...oh, I can't even think of one....like giving Motrin for a cough.

I just am stuck on the ledge with my dd being generally functioning, albeit ticcing...and when you take the risks involved with IVIG....and risk making thins worse....and who know what else down the road...

 

eljomom,

 

how much does your dd weigh? Our dd was on 250mg/day azith even when she was 43 pounds. Maybe 100mg/day is fine for a non-pandas child...but IMHO PANDAS kids don't have a "normal" immune system against strep, they require higher doses of abs, for longer periods of time.

 

If the higher dose of azith (and possibly a switch to another antibiotic, like augmentin) doesn't work, then it may be that there is something else going on (other infection, like lyme) and/or it is time for IVIG (or pex).

[EAMom]

EAMom--dd weighs 45 pounds. I truly feel that strep is NOT an issue right now. She was on a month of Augmentin (treatment dose) before the Zithromax, and I feel confident that would have treated any strep. And she has no different symptoms physically or behaviorally.

I feel like chasing around different abx for an autoimmune disease is like giving ...oh, I can't even think of one....like giving Motrin for a cough.

I just am stuck on the ledge with my dd being generally functioning, albeit ticcing...and when you take the risks involved with IVIG....and risk making thins worse....and who know what else down the road...

 

 

Augmentin wouldn't have necessarily gotten the strep if it was intracellular.

 

Sometimes I wonder if strep acts a little like Lyme in that it "hides out" (intracellular for strep, cysts for Lyme) eluding the normal immune response in suspectable individuals. This is why long term use of certain antibiotics seem to work (vs. the typical 10-30 days)....perhaps it is "getting" the Lyme (or strep) as it emerges from hiding (over the course of months/years) that is critical. And, in the case of PANDAS, also addressing the concurrent immune dysfunction (if needed) with IVIG. Also, remember that Azith. is immune modulating and anti-inflammatory, so that may be another reason that many find it to be effective.

 

As far as increasing the Azith.... IMO there is little risk involved in upping the Azith. for 2 mo. to see if that makes a difference. AS far as whether IVIG is warranted, if you are undecided I think it is resonable to watch and wait (looking at general trends and response to non-strep illness) and see how she does in the next few months. Since she is young and not in a crisis you can wait a few months to see what her trend is. One thing I would keep in mind however, is that it seems that kids that are treated promptly respond better to treatment (vs. those that go undiagnosed/untreated for years).

 

Also, for my dd, tics (or "movements" whatever they are called) seemed to be the symptom that is most resistant to treatment. For example, when we first "discovered" Azith. at the end of 2nd grade, mood improved after about 5 days, OCD after 14 days, and tics/movements took about 6 weeks (on 250mg/day azith.) to go away. The tics did go away (but eventually returned with other infections)...currently dd has very mild tics (or movements) that went away with the first IVIG, returned with illness, but didn't go away with the 2nd. So, (like monarchcat also observes) tics can be a stubborn symptom.

[airial95]

Just my two cents - my son has never fully remitted from his initial onset episode in May 2009 (wasn't dx until January 2010 - we thought it was the "terrible twos"). The effects of the abx were immediate on the rages/tantrums and violence - but not the OCD and other symptoms. Those took time to slowly come along - in a saw tooth pattern like others have suggested. We kept a "daily score" whiched really helped us track his progress - while his every day score seemed to be up and down, each weeks "high and lows" kept going down consistently, which told us he was still improving on the abx. (It was a numerical tracking spreadsheet that we created based on Buster's methodology - I've always made it available to anyone who wanted it - just PM me, it's been our most useful tool!!)

 

We had many set backs, almost all related to exposure to strep from some outside source (usually school). The way our Dr. explained the reason it doesn't just "turn off" to us is that after prolonged exposure (his intitial infection - although it was treated, may not have entirely cleared, we had no reason to re-check at the time) his immune system has been on overdrive. And while the underlying infection may be gone - his immune system is still "misfiring" - reading something in the basal ganglia as being the infection - this takes time to "reset" -hence the prolonged recovery.

 

I think that in kids who are caught immediately, they may completely go back to normal after an extended dose of abx (which had been our pediatriicans experience prior to our son) because their immune systems never went into overdrive mode, but for kids like mine, whose initial infection may have lingered or had consistent repeated expsoure to infection (strep or other), it may be a longer, slower road.