Are we chasing down the wrong villians?

[eljomom]

Buster--one more--probably a "didn't we already cover that?" question, but when you say "who improve on antibiotics or other immuno-modulating therapies"-- are you talking about steroids, IVIG, PEX??? when you say "other immuno-modulating therapies?"

 

Hi P.Mom,

 

I agree with you. Absolutely kids with only tics can have PANDAS or PITAND.

 

If we look through the literature, the kids basically split into five categories:

1. those with sudden onset OCD and simultaneous separation anxiety/urinary frequency or other symptoms
   
2. those with sudden onset OCD and a tic disorder
   
3. those with sudden onset separation anxiety/urinary frequency with or without a tic disorder
   
4. those with a tic disorder and no other symptoms (who improve on antibiotics or other immuno-modulating therapies)
   
5. those with a tic disorder who don't fit the other categories
   

 

There is significant misunderstanding by doctors about all 5 categories, but if we look at who is stirring up controversy, it is a specific set of neurologists who are studying #5 -- those with a long-term tic disorder. Unfortunately their inability to repeat experiments on patients in #4 or #5 is clouding all the other categories.

 

If we look at the studies done by Kurlan and Singer, they are on patients in #5. The patients were drawn from the Tourette's study group with older children who had consistent tics for > 3 years with no remission > 3 consecutive months. In their 2 year longitudinal study in 2008, none of the greater than 80 subjects had any variance in OCD symptoms.

 

While the sudden onset OCD or OC behavior seems to separate the first 3 categories, I don't think the "controversy" will end until the research community comes to agreement on how to separate category #4 and category #5.

 

Best regards,

 

Buster

 

 

There is considerable debate from certain neurologists at Johns Hopkins (and somewhat at Yale) whether kids with tics must also have sudden onset and debilitating OCD to be considered part of the "syndrome".

 

 

 

As always, thanks Buster for all the information. I would like to respond to this quote because I feel it is necessary for parents to know that the kids do not, in order to be considered PANDAS/PITANDS, need to have OCD, etc. I understand there is much debate with the docs over this. However, there is much debate about the existance of PANDAS and we all know it exists. (regardless of what some docs may say)

 

[lismom]

We are in the tics only category. Huge explosion 2 yrs ago. I have seen remission here and there. Now back in waxing. I did try to lessen zith thinking that it wasn't doing what it used to. Did this for the last 2 months. Of course I think this was a big mistake. I hate being the doctor and decision maker. I have started now for day 6, 600mg of zith. I also added 500mg of augmentin. Not sure why. Just thought that maybe a mix would help. Starting slow on augmentin just because starting high on zith. If stomach holds will increase aug.

 

I regards to antibodies. I am wondering whether eventually they will die out. The saving sammy story makes me think this. Her son was on high doses of augmentin for at least three years and then slightly lower for 2 or more. He didn't have strep the whole time so the antibodies running havec making anything else that happens, illness, allergies mimics and turns things back on again and again and again. But, does it eventually lose strength?

 

I am wondering if infact the antibiotics to catch some of the mimic and thats why the doses have to be so high. For me this experiment has started. My son has basically only been on maintanence dose. I was also scared that too high a antibiotic would somehow hurt his system like liver. But at this point the change is needed. I am a little scared to see that it doesn't work but he is older and heavier now.

 

I am also going to look into Lyme. Never ever thought about it untill read about the crossover illnesses with PANDAS and lyme. My family spent quite a few summer vacations on Nantucket Island. This is full of ticks. Saw them on the kids socks and never connected this untill 2 days ago. Kathy

[Buster]

regards to antibodies. I am wondering whether eventually they will die out.

The estimated half-life for the antibodies is around 21-27 days. This of course is in the absence of an antigen that is causing the B-cell to regenerate more antibodies.

 

He didn't have strep the whole time so the antibodies running havec making anything else that happens, illness, allergies mimics and turns things back on again and again and again.

 

Yes, it does seem that once "primed" the antibodies do come back. One theory is that the neuronal tissue itself (with which the antibodies cross-react) acts as an a trigger. The explanation would be that the BBB opens and the T-cells/B-cells are able to be activated. The actual mechanism isn't exactly known.

 

I am wondering if infact the antibiotics to catch some of the mimic and thats why the doses have to be so high.

Not sure what to say. We might be seeing the antibiotic effect. We might be seeing an anti-inflammatory effect. We might be seeing an immunomodulating effect. What's interesting is that the antibiotics usually talked about on this forum (azith and augmentin) both have other properties beyond their straight antibiotic effect.

I was also scared that too high a antibiotic would somehow hurt his system like liver.

It's a valid concern and worth running liver panels every so often.

I am also going to look into Lyme. Never ever thought about it untill read about the crossover illnesses with PANDAS and lyme. My family spent quite a few summer vacations on Nantucket Island. This is full of ticks. Saw them on the kids socks and never connected this untill 2 days ago.

Well, there's a lot that could be going on. I don't know a ton about Lyme, but from what I've read it sure seems that the co-infections play havoc with the immune system and tend to recruit a lot of the T-cells to attack decoys creating over-recruitment of the immune system.

 

Buster

Edited January 3, 2011 by Buster

[Buster]

Buster--we are the ocd, hyper, sep. anxiety that---followed by adding a coulple tics, to a sudden explosion of tics....but it's been 6 months since the explosion with no lessening of tics. Does this mean not likely pandas/pitands? because no lessening? or that perhaps whatever started it is still going wacky auto-immune wise? Her CamK was done over 3 months after it started, and it was 168.

 

It certainly sounds like you are somewhere in the first 3 groups. Were the OCD/Sep anxiety sudden onset or a slow and gradual course? Did antibiotics or pred have any effect on the symptoms? What does your doctor say? The CamK is certainly consistent with other kids in the PANDAS group.

 

Buster

[P_Mom]

Eljomom....

 

 

we have settled on Dr. Latimer.

[lynn]

Can we go back to C3D complements? Is it believed (note use of passive voice) that these little devils actually cause inflammation? And if so, (or even if not) how are they gotten rid of? Or are they mainly only significant as a diagnostic tool and/or interference?