My thoughts on PANDAS and related conditions

[Bat_Sheva_Myllys]

Can you please clarify what you meant by "the strep source being in the gut" in "Will pursue tonsilectomy, but continue to have concerns about the strep source being in the gut?"

 

Bat-Sheva

[lwidoc]

Dr. T

 

Thank you for you breadth of testing. I see some of the advisors to this site are well published in the realm of orthomolecular psychiatry. That is good --- PCR will prove what they knew all along ---- we have a small cluster of boys all with PANDAS three of them had tested positive for cryptopyroles as children long ago ---- there are learned clincians now thinking that this urine chemical is related to a byproduct of lyme's disease or co infection like bartonella. The whole proteobacteria class is suspect Especially when you consider that what we are seeing today is a likely a revisitiation of Von Economo's Syndrome ----- the time was ripe in the 1918 --- post war era. If you look at the work of Dr. Didier Raoult, you will find that he is discoving rickettsia and bartonella to be important copathogens in that era. Bartonella was rediscovered in about 1992 -- this disease could explain perivascular lymphocyosis, altered membrane permeability, nitrosative stress. Low SAM, altered glutatione metabolism, end organd vasculitic changes

 

The cure for autism/PANDAS epidemic may only be 6 serologies away.

 

Is there a way to get this out to the primary care or ID immunology people ---- we cannot contiune to turn a blind eye to chronic endemic disease in children.

[EAMom]

My bad, forget the link....

 

http://www.timesonline.co.uk/tol/life_and_...icle6825457.ece

 

wow. really interesting!

[EAMom]

Re PITANDS.

 

I think we need to differentiate between true PITANDS and PANDAS/PITANDS

 

1) PANDAS/PITANDS where GABHS was the original trigger (setting the autoimmune process in motion). The child may not have a current strep infection (or is on abs) but now reacts to non-strep illnesses (in addition to strep). This is from Swedo's first 50 cases paper:

 

The possibility that pathogens other than GABHS

can induce neuropsychiatric symptoms is suggested by

the presence of non-GABHS-related exacerbations in

the children with PANDAS, as has been reported for

Sydenham’s chorea (23). It is postulated that GABHS

needs to be the initial autoimmunity-inciting event but

that subsequent symptom exacerbations can be triggered

by viruses, other bacteria, or noninfectious immunologic

responses.

 

2) and PITANDS where strep is not involved

 

In Bat Shiva's dd's case...how can we be sure what scenario is going on? Can we say with certainty that undiagnosed strep was not the original trigger in her dd's illness (perhaps years before, and behavioral symptoms were mild enought to be undiagnosed). Or, even that she currently has intracellular strep hiding out somewhere (in addition to a mycoplasma infection) and the mycoplasma is what is "pushing her dd over the edge" so to speak, causing the bbb to open up, but strep is still underlying? Or is this just Mycoplasma and strep is completely uninvolved?

 

Our (Buster's and mine) own PANDAS dd was clear-cut PANDAS, but like many on this forum, has reacted to non-strep triggers. Even on abs (since March 08, Azith since June 08), dd reacted to both strep exposure (such as when family members had strep) and non-strep illnesses (fifth's, H1N1) as well as dental procedures (strep being released in to blood stream, stress, nitrous?). She had IVIG in Aug. 09 b/c symptoms were not completely controlled on abs alone and we could see her "baseline" rising. BTW, it's not clear if she'd fall into the type 1 or 2 category. Her cultures (perianal, and throat) were positive in March 08 (as was her sister's throat culture) when we first learned of PANDAS. Her ASO/anti-dnase b have always been low/normal but her CaMkinase2 has ranged from the high pandas range (not in an exacerbation) to the high SC range (highest Dr. C. has ever seen--253) during her exacerbation after H1N1 in June 09.

 

BTW, Bat Shiva, the whole mycoplasma scenerio draws in to line another possible reason why some kids respond better to Azith. vs. other abs:

1) it is anti-inflammatory/immune modulating

2) it gets intracellular strep

3) it gets mycoplasma

[EAMom]

Dr. T

 

Thank you for you breadth of testing. I see some of the advisors to this site are well published in the realm of orthomolecular psychiatry. That is good --- PCR will prove what they knew all along ---- we have a small cluster of boys all with PANDAS three of them had tested positive for cryptopyroles as children long ago ---- there are learned clincians now thinking that this urine chemical is related to a byproduct of lyme's disease or co infection like bartonella. The whole proteobacteria class is suspect Especially when you consider that what we are seeing today is a likely a revisitiation of Von Economo's Syndrome ----- the time was ripe in the 1918 --- post war era. If you look at the work of Dr. Didier Raoult, you will find that he is discoving rickettsia and bartonella to be important copathogens in that era. Bartonella was rediscovered in about 1992 -- this disease could explain perivascular lymphocyosis, altered membrane permeability, nitrosative stress. Low SAM, altered glutatione metabolism, end organd vasculitic changes

 

The cure for autism/PANDAS epidemic may only be 6 serologies away.

 

Is there a way to get this out to the primary care or ID immunology people ---- we cannot contiune to turn a blind eye to chronic endemic disease in children.

 

lwidoc, I'm confused about what you are saying...

 

Are you suggesting that most (many/all?) PANDAS cases have an underlying tick borne dz (eg. lyme) that is the root cause?

[P_Mom]

Good question EAMom...I am wondering that, too. We did have our boys checked for Lyme Disease...negative.

[EAMom]

My dd has never been checked but we're not in a lyme-y area and she's never had a tick.

 

I believe Dr. T.'s rationale for checking for lyme is that it is another cause (rule out) of neuropsychiatric symptoms...not that it is a "cause" of pandas.

 

Interesting to note that Hawaii doesn't have lyme http://hawaii.gov/health/family-child-heal...eet/cddlyme.htm but has PANDAS and plenty of RF.

[Bat_Sheva_Myllys]

It is really hard to tell because

- From other parents' stories I can conclude that not all kids are tested for both Strep and MycopPneo, mmostly only for Strep,

- Many are not tested usign the right tests,

- In our case, we had an actual infection that triggered and knew to test for MycopP, throat smear and ASO. MycopPneo was positive while others negaative. She was Lyme negative as well as a score of otehr possible causing factors.

 

MycopPneo has been on the rise ever since and the ups and downs seem to match the ups and less ups of her condition and went lower (but never gone real down) with immunomodul. treatment as well as the 1st antibiotics.

The border level (local lab system) is 33-44, she was positive in autumn 2005, (abx and Pred and 1 year free), 61 in autumn 2006 autumn with 2nd exacerbation. 128 in May 2007 when starting IVIG (4 good months thereafter), then in autumn 2007 infection and exacerbation, level shot to 187 and a month later 186, some more IVIG (not completed) and one Medrol 3 day drip Nov 2007. no data on 2008 the situation was grave with Risperdal and then eased and functionality improved a good deal after we stopped it, but she did not get well enough to go back to school, April 2009 she tested 111 and in December 2009 156. AST negative.

Only 2 weeks ago we learnt for the 1st time that ADB test was available but have no result yet. Most doctors involved so far knew nothing about the condition but claimed to know all and believed that a negative throat smear was the clue.

 

Azithromycin should be able, as a microlid to take care of both.

All exacerbations but for the actual trigger were hespiratory tract infections or ear infections.

 

Sandra had bad ear infections as an infant but they disappeared after surgical procedure at 1.5 yo. Absolutely no history of tics, OCD, anxiety or anything of the kind. She has always been a very healthy and balanced kid.

 

We have just started 500mg Zithro after 2 years of no treatment what-so-ever, and her current condition is terrible (she is mostly bed ridden).

No idea how this will work, but we have to try. Iäd hope to be able to consider alternating suitable abx types or top it with Steroid pulses and/or IVIG or PEX/pheresis whatever we can get (no idea yet as Marjaana and I are only starting to win ground in this war against local medical ignorance and reluctancy to learn). Would really love to ahve some support of the more experienced medical professionals to guide mine here.

Our presumption is that (1) if Sammy could have been so successfully treated after the long time he was wrongly diagnosed and treated, maybe Sandra could too (even though Dr K told me at the time he did not expect her to recover at her age and duration of the condition) (2) if abx worked for him (he could nto get PEX/pheresis, if I recall correctly), maybe it will do the trick for her too.

I would love to ehar about other cases of teenagers who suddently developed a similar condition and their treatment.

Sandra will be 20 in 3 weeks.

 

Bat-Sheva

 

 

 

 

 

 

 

 

 

 

 

 

 

Re PITANDS.

 

I think we need to differentiate between true PITANDS and PANDAS/PITANDS

 

1) PANDAS/PITANDS where GABHS was the original trigger (setting the autoimmune process in motion). The child may not have a current strep infection (or is on abs) but now reacts to non-strep illnesses (in addition to strep). This is from Swedo's first 50 cases paper:

 

The possibility that pathogens other than GABHS

can induce neuropsychiatric symptoms is suggested by

the presence of non-GABHS-related exacerbations in

the children with PANDAS, as has been reported for

Sydenham’s chorea (23). It is postulated that GABHS

needs to be the initial autoimmunity-inciting event but

that subsequent symptom exacerbations can be triggered

by viruses, other bacteria, or noninfectious immunologic

responses.

 

2) and PITANDS where strep is not involved

 

In Bat Shiva's dd's case...how can we be sure what scenario is going on? Can we say with certainty that undiagnosed strep was not the original trigger in her dd's illness (perhaps years before, and behavioral symptoms were mild enought to be undiagnosed). Or, even that she currently has intracellular strep hiding out somewhere (in addition to a mycoplasma infection) and the mycoplasma is what is "pushing her dd over the edge" so to speak, causing the bbb to open up, but strep is still underlying? Or is this just Mycoplasma and strep is completely uninvolved?

 

Our (Buster's and mine) own PANDAS dd was clear-cut PANDAS, but like many on this forum, has reacted to non-strep triggers. Even on abs (since March 08, Azith since June 08), dd reacted to both strep exposure (such as when family members had strep) and non-strep illnesses (fifth's, H1N1) as well as dental procedures (strep being released in to blood stream, stress, nitrous?). She had IVIG in Aug. 09 b/c symptoms were not completely controlled on abs alone and we could see her "baseline" rising. BTW, it's not clear if she'd fall into the type 1 or 2 category. Her cultures (perianal, and throat) were positive in March 08 (as was her sister's throat culture) when we first learned of PANDAS. Her ASO/anti-dnase b have always been low/normal but her CaMkinase2 has ranged from the high pandas range (not in an exacerbation) to the high SC range (highest Dr. C. has ever seen--253) during her exacerbation after H1N1 in June 09.

 

BTW, Bat Shiva, the whole mycoplasma scenerio draws in to line another possible reason why some kids respond better to Azith. vs. other abs:

1) it is anti-inflammatory/immune modulating

2) it gets intracellular strep

3) it gets mycoplasma

[P_Mom]

yeah...I just personally don't think that Lyme (or other co-infections...tick borne) are the root cause.

 

Just my opinion.

[Bat_Sheva_Myllys]

I think it is important to test for other agents that may cause similar symptoms. Lyme is clearly one of them.

I would not start drawing border lines at this stage between the obvious possible causing factors or else I am afraid we could be ending up making the same mistake that was made about PITANDS, JITANDS, PANDAS and the like before this was made a public issue, misdiagnosing them and pushing them under the wrong umbrella/s.

 

While I admire Beth for the campaign she is leading and ever so thankful for her writing the book and telling her story, thus giving Sandra and us new hope and treatment ideas, I am afraid the Got Strep campaign, while getting doctors to wake up and get to know the condition, will also lock their attention on one of the underlying causes, leaving others untreated and condemned to life in misery. I think we know far too little to dismiss any other possible causing agent. I have already been in this situation where Sandra was dismissed as a pure mental case because she did not test positive to Strep... and the medical specialist claimed he knew all about PANDAS and that Swedo now put all under the umbrella of PANDAS. Just recently our cases were all dismissed and put under the umbrella of TS or some other umbrellas available.

 

What differentiates a case of undiagnosed and untreated Lyme and that of an undiagnosed "hidden Strep" or "hidden Mycoplasma Pneominiae"?

Lyme is already known and has a nkown and effective treatment. Its symptoms can well be similar to those we are seeing in our kids. Rulling it out, like other causes that can produce similar symptoms is essential both for the recovery of our patients and for the better understanding of the condition we are dealing with.

 

Bat-Sheva

 

 

yeah...I just personally don't think that Lyme (or other co-infections...tick borne) are the root cause.

 

Just my opinion.

[Kay]

I think it is important to test for other agents that may cause similar symptoms. Lyme is clearly one of them.

I would not start drawing border lines at this stage between the obvious possible causing factors or else I am afraid we could be ending up making the same mistake that was made about PITANDS, JITANDS, PANDAS and the like before this was made a public issue, misdiagnosing them and pushing them under the wrong umbrella/s.

 

While I admire Beth for the campaign she is leading and ever so thankful for her writing the book and telling her story, thus giving Sandra and us new hope and treatment ideas, I am afraid the Got Strep campaign, while getting doctors to wake up and get to know the condition, will also lock their attention on one of the underlying causes, leaving others untreated and condemned to life in misery. I think we know far too little to dismiss any other possible causing agent. I have already been in this situation where Sandra was dismissed as a pure mental case because she did not test positive to Strep... and the medical specialist claimed he knew all about PANDAS and that Swedo now put all under the umbrella of PANDAS. Just recently our cases were all dismissed and put under the umbrella of TS or some other umbrellas available.

 

What differentiates a case of undiagnosed and untreated Lyme and that of an undiagnosed "hidden Strep" or "hidden Mycoplasma Pneominiae"?

Lyme is already known and has a nkown and effective treatment. Its symptoms can well be similar to those we are seeing in our kids. Rulling it out, like other causes that can produce similar symptoms is essential both for the recovery of our patients and for the better understanding of the condition we are dealing with.

 

Bat-Sheva

 

 

yeah...I just personally don't think that Lyme (or other co-infections...tick borne) are the root cause.

 

Just my opinion.

 

We live in the thick of lyme country where it all began so of course that was one of our first test. She was negative.

[P_Mom]

Bat-Sheva......I agree. However, Lyme symptoms start slowly...and you will have many symptoms before, if any, neurological manifestations take place. It takes a while for the bacteria to grow......Lyme Borellia replicates VERY slowly...hence, the gradual onset of symptoms. I have never heard of (although I surely may be wrong) a Lyme infected person going "crazy" over night....like with strep....it takes a while to get there. I do 100% agree that there are other triggers to PANDAS/PITANDS....just still don't THINK that Lyme is the root cause of PANDAS......if Lyme was at the root, then the person would have Lyme, not PANDAS...right??...... Strep was a CLEAR trigger with us.....like M.P. is with you. Yes, rule it out though...testing can't hurt....we checked on it.

[EAMom]

and the medical specialist claimed he knew all about PANDAS

 

That sends up major red flags for me when someone says "they know all about PANDAS". Usually that means they read about it on Wikipedia....

[P_Mom]

LOL EAMom...exactly. When this first started, we contacted our pediatrition and he told us on the phone he "knew all about PANDAS." When we got there...he knew NOTHING and referred us elsewhere. He actually pulled out a book and read us a paragraph on it...I guess that is where the "knowledge" he was referring to came from...but, when faced with a Mom who had spent endless hours researching and had lots of questions....he just didn't have a clue!

[Bat_Sheva_Myllys]

After 5 yrars of struggle, at times I feel that my worst struggle is not Sandra's condition but the medical professionals we get to meet along the way, especially those who do not care. They make me mad. At times all I can wish for them is to change places with me for a couple of weeks, see the situation for what it is and the despair about her future. When kids are young adulthood seems so far away, then, when you get there and the kid is still very sick it hits you hard.

I can find the strength to take care of her, the strength to try and find a cure, but I cannot acommodate people who chose to be doctors and abandon a patient to rot alive. Cannot understand and cannot forgive.

 

Research shows taht diagnosis and treatment mistakes are mostly made by experienced doctors who are too sure of themselves, those who think they ahve seen it all and arrogant to the point fo forgetting what medical thinking is really about, not so much by the younger and inexperienced ones.

 

Bat-Sheva

 

 

 

 

and the medical specialist claimed he knew all about PANDAS

 

That sends up major red flags for me when someone says "they know all about PANDAS". Usually that means they read about it on Wikipedia....