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This is my first post on this forum, although I have been following for years. I would appreciate some input/opinion/feedback as I am trying to determine what direction to go in helping my son.

 

A quick summary:

Feb 2013 we had severe and rapid onset of OCD, tics, behaviors, the whole typical "PANS" deal. We suspected an infection-triggered scenario, but were unable to find the right doc at the time. After some diet restrictions and time, my son made a full recovery by July 2013. He went to Kindergarten and stayed baseline for two years. Again, this Feb 2015 his symptoms resurfaced... tics, anxiety, the behaviors, etc.

 

Please consider these blood results (Done through Dr. Trifilleti) and help me determing if I a dealing with PANS here or if I should be taking a traditions TS route.

 

Found Dr. T after recovery from initial onset. Some blood work done on December 2013 during healthy time showed ASO= 10.1 and DNase-1; Myco was 1918.

Dr. T concluded that his symptoms were likely related to the "old" Mycoplasma infection titers found.

 

Fast-forward to second round of symptoms: March 2015 ASO= 170.6 and Anti-DNase B=518 Myco was still elevated, but coming down.

Are these strep numbers a big enough jump from the baseline blood work done Dec 2013 to cause a PANDAS flare? Am I dealing with infection-triggered symptoms here? I should mention that we didn't have any signs of a strep infection.

 

July 2015 showed ASO down to 128 and Anti D-Nase down to 404, but we are still symptomatic.

 

I have a consult with Dr. T tomorrow and I would appreciate any insight and advice on how to proceed- PANDAS route or accepting a TS/OCD Dx?!?

I am confused with all of it and all I want to do is help my little boy.

 

Thanks

 

 

 

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If only strep and myco were the only types of infections that can precipitate a flare... (They are not.) In addition, the Anti-Dnase number is not only still elevated, but these titers do not necessarily correlate well with symptoms, as you have seen. The March Anti-Dnase does indicate a strep exposure - was it treated?

 

As far as I know, the suddenness of the onset is the main distinguishing factor between PANS and regular TS/OCD. Indeed, some have speculated that perhaps regular TS/OCD are also immune-related. You have sudden-onset, twice - relapses are not uncommon with PANS. Additional food for thought: is there urinary urgency? Symptom relief from anti-inflammatories?

 

Make your list of questions for your appointment tomorrow. Think big picture about possible immune system disfunction and what you might like tested. (Personally, with this timeline of events, I'd be inclined to continue treating for strep in addition to whatever else the doc comes up with, also considering whether an antibiotic change is in order if he's on one currently.) Good luck!

Edited by jan251
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The severe and rapid onset would make me think it was related to an infection. Have you had any general blood work done, like red and white blood cells? Are there any other symptoms that might indicate Lyme disease (e.g. known tick bite, lethargy, rash, joint pain) ?

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Lyme was ruled out, negative results.

Symptoms include urinary frequency and this past week he wet himself three times.

We treated with a combo of abx for approx one month (March-April) but then started experiencing vertigo and tinnitis so we backed off the abx. Anti inflamitories do provide some relief.

I am stuck at the crossroads of going with more antibiotics or looking into other triggers like diet, etc. I am not confident that we are definitely a pandas case...

Allergy testing showed positive results for nearly every thing, milk being the worst with IGE around 6. He's also very sensitive to food dyes and additives.

So I'm all sorts of confused!

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I don't know where you live. This most recent flare for you began in February. We always worsen in March and that is when our snow melts and mold and pollen hits the air. Our DS has been in a severe flare since March 2014 and he had a 2 month reprieve in Jan and Feb 2015 only to spiral down again March 2015. So in our case we have figured out allergies are the trigger. Our DS has been on prednisone 10mg recently as a maintenance dose after a 9 day higher dose taper. He was so nonfunctional in March he was homebound and after one 30mg tablet before bed, he woke up the next AM normal. So if that doesn't prove the PANS theory I don't know what does.

 

We too have questioned the TS vs PANS situation. My theory is that we have in our family the genes for autism, tic disorder and OCD...so our DS has those genes. I can tell in hindsight by observing family members. I feel like a trained neurologist, the things I notice in people now that we have dealt with our DS over the last 10 years. But, he will become so nonfunctional in a short period of time, and his current flare has not only severe OCD and tics but also symptoms of autism and age regression that you would have to see for yourself to believe. He looks and acts like he has mental retardation along with the tics and OCD. There is no way that is just TS. And I do not think regular TS would respond to prednisone.

 

That is my opinion.

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"I am stuck at the crossroads of going with more antibiotics or looking into other triggers like diet, etc."

not a crossrods at all, please try to think of it as complementary. and you are not done with the two either. supplements can help you child process toxins usually but whatever it needs to process.

23 and me is quite useful in quiding you through what supp are likely to be helpful

fish oil w/out mercury is a must.

also, forget about diagnosis and tests. sciences does not know for certain if there is a ts that is not somehow related to the immune system

the question is what makes your child better. we got there through trial and error.

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Another two cents: urinary issues are such a common symptom of PANS that they are listed in all the proposed criteria I have seen. The anti-inflammatories helping would point to an inflammation (immune-related) cause.

 

I agree with pr40 that your approach in choosing between infectious triggers and dietary ones need not be either/or but rather both/and. In other words, there can be multiple immune triggers. My rough understanding is that avoiding dietary triggers can be helpful for healing the gut (and therefore for healing the immune system).

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In our case, the Moleculera Cunningham panel for elevated CamKinaseII indicated PANS, not TS for ds15. Though I suspect there might be some low-level tics that could be dx'd as "TS" since he had several tics at same time in preschool (pre-PANS onset).

His tics are very infrequent now, and prior to treatment we had severe head-jerking and loud constant yelping, among other tic-related issues.

 

Some OCD still present, when anxious.

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Lyme was ruled out, negative results.

 

 

Lyme can not be ruled out if you were testing for antibodies. Both the ELISA and WB do this. If your son's immune system is compromised he will not be producing antibodies in sufficient quantities to register. DD was ELISA negative and both CDC and Igenex WB negative for lyme, if you simply count numbers of bands. She did have 1 IND (indeterminate - weak) lyme specific band (no cross-reactivity was possible), so the LLMD said lyme.

 

As we treated DD actually started producing more reactive WB bands, even though her symptoms were improving. The LLMD said this was because her immune system was beginning to function normally and producing the needed antibodies. Generally, the sicker you are with lyme and coinfections, the less reactive your WB will be. Lyme, bartonella and babesia are all very immune suppressive.

 

DD's predominant infection, and the one that caused most of her PANS symptoms, was bartonella; and now we have found babesia too.

 

You can't rule out either of those 2 infections using a lyme test. They are usually found as coinfections as well as mycoplasma and many viruses because the immune system is not functioning at full capacity), but can be stand alone infections as well.

 

Sorry to say, but the PANDAS doctors seem to stick mostly to treating strep and don't have much experience with arthropod-borne infections.

 

Please keep this in mind as you search for help for your son.

 

Check for methylation defects, which can be caused either by genetic deletion or simply result from the methylation cycles being overwhelmed by toxins (produced either by bacterial die-off or by pesticides/metal adjuvants in vaccinations).

 

I found that DD's ticcing was significantly correlated to toxin load from die-off.

 

Try to eat as organically as possible. Glyphosate acts as both an antibiotic (will kill beneficial gut bacteria which is a significant part of the immune system) and a mineral chelator (will tie up essential minerals found in both plant and animal food, rendering it unavailable for absorption).

 

http://www.mdpi.com/1099-4300/15/4/1416

 

http://articles.mercola.com/sites/articles/archive/2014/05/08/heavy-metals-glyphosate-health-effects.aspx

 

http://people.csail.mit.edu/seneff/

 

Be aware than almost all conventional legumes and grains are sprayed with glyphosate (RoundUp) before harvest to help to uniformly dry the plants. If wheat, beans etc. don't say "organic", they are likely sprayed. GMO's get a double whammy.

 

Most GMO's are grown to feed CFAO animals. Glyphosate is stored in their tissues and we eat it when we eat conventionally raised meat. Try for grass fed.

Edited by rowingmom
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