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Mycoplasma pneumoniae causing PANDAS-PITANDS in late teen


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Here we go again :-) This time with an article about Mycoplasma pneumonia infection and ... PANDAS/PITAND ! :

 

"9) Ercan TE, Ercan G, Severge B, Arpaozu M, Karasu G

Mycoplasma pneumoniae infection and obsessive-compulsive disease: a case report.

J Child Neurol. 2008 Mar;23(3):338-40.

It has been demonstrated that obsessive-compulsive disease and/or tic syndromes in children may be triggered by an antecedent infection especially with group A beta-hemolytic streptococci, and this subgroup of children has been designated by the acronym PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections). Other infectious agents such as viruses and bacteria have also been reported to be associated with the acute onset or dramatic exacerbation of obsessive-compulsive disease or Tourette syndrome, and another acronym, PITAND (pediatric infection-triggered autoimmune neuropsychiatric disorder) has appeared in the literature. The involvement of other infectious agents such as Mycoplasma pneumoniae has been described in single case reports. We describe a case of a 5.5-year-old boy who suddenly developed obsessive-compulsive disease symptoms during a M. pneumoniae pneumonia. After treatment with oral clarithromycin, all his obsessive-compulsive disease symptoms disappeared. To our knowledge, this is the first report that shows the association between Mycoplasma pneumoniae infection and obsessive-compulsive disease. [PubMed Citation] [Order full text from Infotrieve]"

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Thank you for finding all of thess :wacko:

 

Hopefully this is confirming what i've heard dr k thinks in that all of these conditions are tirggered by something...if i'm not miss quoting someone.

I have emailed dr k my ds history and he does think my boy may have pandas and we are arranging a phone consult.

I've got to slow down thought $$$$$

Mind you i would sell my house if i could be sure whatever was the cure!!!

Maybe i can take this one to my ped and have them work with me w/i insurance and referrals to other specialist ie immunologist

 

Does anyone know If i consult w/ dr k can he order tests or can he, will he get my ped to order them???

 

Thanks again PD for all the leg work and everyone else too!!

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Bat-Sheva,

thank you for your info.

So am I getting it right that when she had these tests recommended by the doctor in Isreal, it was found that she tested positive to Influenza A. and also showed the MP infection or antibodies or whatever marker? and by that time, the actual illness was kind of over, but for the cough and symptoms of tics, etc? Basically, could you say this was an underlying, ongoing infection that was not fully eradicated? and despite antibiotics, it still did not clear, or rather came back with the next resp. infection?

 

sorry to pick your brain on this, but I think it helps some of us to understand the role of underlying infections that may not be obvious. wow to you for finding out all this.

 

thanks

Faith

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Sandra has never had any problems, very kind, empathic, outgoing, highly intelligent, socially active, sporty (our Karate Kid), musical, artistic, succesful academically but not obsessed with either studies or anything else. A well balanced kid. and then we heard such things as sudden Tourett's, Sudden late teen Aspberger (a Nobel Prise in medicine should go to the leading child neurologist who invented that one), schyzo, enxiety disorder, bipolar, psychotic, you name it - they invented, while all along we could see that underneath the look-alike symptoms she is totally normal and fed up with these very strong and ever lasting movements and not being able to concentrate, at times feeling reality is escaping or getting stuck, vocalizations, hair pulling, compulsive movements, getting stuck in the bathroom not being able to get up from bed, toilet, car, in fact any place where she would sit down will require a long session of extremely storng and jerky choreatic-athetotic movements. No obsessive thoughts have emerged in the 5 years and I am extremely thankful for her strong and pisitive chracter and spirit, as she refuses to give up or get depressed and is always willing, even when not able to, to help in house chores, try to read a little, try to play her musical instruments, help with the dogs, help anybody who needs.

 

The beginning was (as we later learnt) Influenza A and Pneomonia caused by Mycoplasma Pneomoniae.

The Influenza was gone within the normal time of 2 weeks but weakness, the cough persisted for a long time. She was still badly coughing when we were seeing Dr Milo in Israel in July August and Well after that when we got back to Finland and ran the tests and until she took antibiotics for Mycoplasma caused Pneomonia thereafter. That cleared the symptoms almost completely and the short course of Prednison 60mg which she took in October (we wanted to see the separate effect and wanted to make sure we could follow possible side effects of the heavy steroid treatment, and she was anyway already so far better, so we waited for the 1 week Autumn vacation) and she was all clear until the autumn of the following school year.

 

We suppose that it a case of antibodies retriggered by infection but the mechanism is a guess. Only this week I got some extra IgG values that were stored but never reported to us in the local medical communal center... and it is obvious that ever since she had MycopP her IgG has been high and strongly fluctuating within the very positive range at times over 100% chang. Her leucocytes have been elevated as a rule but CRP normal.

 

My intuition, as well as that of Marjaana (the former school GP) is that the MycoP has not been eradicated by the initial antibiotics and neither by the 2nd round, a year later, both were normal short courses. We never tried a longer one as she prescribed medication according to the normal procedure for pneomonia and was also advised to do so by the head of neurology in our area hospital who never bothered to meet Sandra (proven being a total failure both as a doctor and human being and we would not accept having anything to do with her or her clinic. No other options available in the national system and the private ones are the same faces... We tried privately the best name in the country who got first excited about the IVIG option, for the finance of which we had to wage a real war, but gave up once the schedule was messed up during his absence in the 1+ month of the summer vacation and disappeared from the scene.)

 

No idea what else but an underlying, ongoing infection can explain these persistantly high and strongly fluctuating IgG values and the elevated Leucocyte values, but I am not a specialist (unless you count my 5 years adamantly researching the subject a valid basis of knowledge, but then so are all other PANDAS and Tourette's parents I have so gar been in touch with. I would love to find another PITANDS parent, though).

 

Inspired by the Saving Sammy story and treatment solution we intend to go ahead with long term antibiotics for Mycoplasma Pneomoniae, but need information on earlier suhc attempts, whether for PITANDS of other syndromes caused by it.

Marjaana and I now managed to get one local acting GP interested in the case (you really do not want me to explain how this local system works and why it is badly malfunctioning) and he too is of the opinion that we have to get somehting done and fast and now provides for lab test referrals and other such. We intend to hold a meeting in less than 2 weeks and I hope to have some valid info for these 2 GPs to decide how we are to proceed.

 

We also managed to get the head of Rehab clinic at the area hospital (the only clinic we managed to get Sandra to) to finally grasped the idea that there is a causing factor which is probably active and not only symptoms and that psychiatry and its medications are not going to solve an immune induced problem, although it may offer some therapy methods to ease symptoms, and we hoe to see an infection specialist next month. The problem is that he too knows nothing about PITANDS and like all the others will have to study the subject while having no time allocated for it. Hope he has the interest and can maintain it and that if we end up needing plasmapheresis, he may well be the one for the job.

 

Hope my reply is not too long but I ahve been bearing the daily load alone for far too long

Bat-Sheva

 

 

 

 

Bat-Sheva,

thank you for your info.

So am I getting it right that when she had these tests recommended by the doctor in Isreal, it was found that she tested positive to Influenza A. and also showed the MP infection or antibodies or whatever marker? and by that time, the actual illness was kind of over, but for the cough and symptoms of tics, etc? Basically, could you say this was an underlying, ongoing infection that was not fully eradicated? and despite antibiotics, it still did not clear, or rather came back with the next resp. infection?

 

sorry to pick your brain on this, but I think it helps some of us to understand the role of underlying infections that may not be obvious. wow to you for finding out all this.

 

thanks

Faith

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What is dd?

(can anybody come up with a short glossary for the abbreviations commonly used on this forum. Thanks)

Back in autumn 2005 Sandra got a normal dose of Zythromax for pneomonia (think it was for a week or so). This was effective and with a 7 or 8 days 60mg PRednison a few weeks later she got totally well for 1 year.

The same regimen was tried when the symptoms returned a year later in autumn 2006 but we did not see much effect so it was abandoned and we tried a long term Prednison with tapering. Not much help. Terrible side effects. IVIG did the job, immediate very positive reaction for 4 months, treatment schedule messed up and the whole thing came badly back.

We now consider trying Zythromax on a long term and keep it prophylactically, but the 2 GPs who are with me behind the idea have of course no experience with such a case and would like to play safe, so we are looking for reference information.

We consider Zythro because of the bacteria in question, presuming now those doses at the time did not fully eradicated the very tricky bug.

Reading the forum various messages I realised others here have been on Zythro for long periods I might as well start a new thread regarding long term use of Zythro...

It is obvious that her MycopPneo IgG values have been positive ever since the infection back in spring 2005 (we tested for Strep. Until we got to read the Sammy book the test was a throat smear... now when we used AST (the only test available in Finland) it was negative. No idea if the Anti-DNase-B would have shown something we do not know of even if it were available. In any case, her MycoP IgG have been on the rise. Those few test we were let to do provide information about high (so far up to 5 tomes the positive threashold) and fluctuating in the range of 100%.

She had 1 time 3 days Medrol drip (should have been on pulse treatment but the neurologist got enough and left the entire thing incomplete and became incommunicado and the GP he ordered to perform it did not have a clue how and if to continue with the Steroids or the IVIG, so this lane to was celarly not fully explored. )

Other than these she had a few occasions of antibiotics prescribed for suspected Sinus infections.

 

We consider that we have certainly not tried the long term antibitocs if one can say the antibiotics lane at all, based on those 2 times,

and

in fact we have not really tried other lanes they one should have either, but getting them is altogether a far more complicated story.

I think we are going to start the Antibiotics very soon (her condition is really bad and she is about to collapse) and if it dos not fully work (after all, she has been ill for so long and Dr K said what he did and maybe he knows what we do not, or not) we still can try many other options, including long term low dose steroids, pusle, bursts, IVIG and even Plasmapheresis, if only we get a Dr in the position to prescribe and perform it... We might have one but that we shall know only in a couple of months because nothing is this system really moves. In fact, we have been more waiting months and months to be given appointments than anything else and it is this dragging for the past 4 years which causes me and my GPs anxiety and anger, and makes Sandrafed up and tired.

 

Bat-Sheva

 

 

 

 

Bat-Shelva,

What antibiotics (and dose, length of treatment) has your dd been on?

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When are daughter manifested in late October, the first doctor/team we saw was James Leckman at Yale University here in the states. He was VERY interested in Mycoplasma pneumoniae, and tested our daughter immediatley and ruled it out. I would encourage you to contact him. He knows EVERYONE!

 

On your comment regarding Sue Swedo...we got the same cold sholder, the same exact way you did!

 

36% of all children with strep NEVER get a rise in their ASO (strep) titers! I just found out over the last few weeks, as our entire family has had lab work completed, that we ALL have/had elevated ASO titers that coincide with our daughters recent manifestation of her sneezing tic!! My DD who has this awful tic is the only member of our family that doesn't show a rise!

 

Stay strong, stay focused! You will find your answers! Best of luck to you and your family.

 

Lynn

 

I am desperately looking for any information on other cases in which the underlying cause for the PANDAS symptoms are Mycoplasma pneumoniae and not Strep.

 

Our Sandra is clearly such a case (5 years). Since the onset in 2005 her MP IgG are positive, elevated up to 6 times compared to the base value, and fluctuate, and so are her leucosyte values.

 

I told about her case on http://www.latitudes.org/forums/index.php?...d&pid=41310

 

After getting hold of the Saving Sammy book and getting doctors to read it, we are finally getting somewhere with doctors accepting the idea of trying long term suitable antibiotics and/or other treatments, starting with the less invasive and harmful ones.

 

I am now looking for information on similar cases treated, by whom and with what degree of success.

 

If any of the doctors who treated such patients is reading this message. Would love to have you assist the Finnish doctors on the case. Please get in touch (batsheva.myllys(at)gmail.com).

 

I believe that Sandra can be saved and still have a normal future. She will be 20 next month, a quarter of which has been made real ###### by PANDAS-PITANDS.

 

Bat-Sheva Myllys

Finland

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Thanks Lynn

Any e-mail address or fac number for James Leckman at Yale?

 

Bat-Sheva

 

 

 

 

When are daughter manifested in late October, the first doctor/team we saw was James Leckman at Yale University here in the states. He was VERY interested in Mycoplasma pneumoniae, and tested our daughter immediatley and ruled it out. I would encourage you to contact him. He knows EVERYONE!

 

On your comment regarding Sue Swedo...we got the same cold sholder, the same exact way you did!

 

36% of all children with strep NEVER get a rise in their ASO (strep) titers! I just found out over the last few weeks, as our entire family has had lab work completed, that we ALL have/had elevated ASO titers that coincide with our daughters recent manifestation of her sneezing tic!! My DD who has this awful tic is the only member of our family that doesn't show a rise!

 

Stay strong, stay focused! You will find your answers! Best of luck to you and your family.

 

Lynn

 

I am desperately looking for any information on other cases in which the underlying cause for the PANDAS symptoms are Mycoplasma pneumoniae and not Strep.

 

Our Sandra is clearly such a case (5 years). Since the onset in 2005 her MP IgG are positive, elevated up to 6 times compared to the base value, and fluctuate, and so are her leucosyte values.

 

I told about her case on http://www.latitudes.org/forums/index.php?...d&pid=41310

 

After getting hold of the Saving Sammy book and getting doctors to read it, we are finally getting somewhere with doctors accepting the idea of trying long term suitable antibiotics and/or other treatments, starting with the less invasive and harmful ones.

 

I am now looking for information on similar cases treated, by whom and with what degree of success.

 

If any of the doctors who treated such patients is reading this message. Would love to have you assist the Finnish doctors on the case. Please get in touch (batsheva.myllys(at)gmail.com).

 

I believe that Sandra can be saved and still have a normal future. She will be 20 next month, a quarter of which has been made real ###### by PANDAS-PITANDS.

 

Bat-Sheva Myllys

Finland

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Yup...I agree your dd needs to get on full-strength abs (possibly eventually going down to a lower prophylactic dose). My 58 pound dd has been on 250mg/day Azith. since June 08 (when she was 44 pounds).

 

If I were you, I would want at least 500mg/day Azith for 1-2 mo...and then play it by ear from there.

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