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Bat_Sheva_Myllys

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Everything posted by Bat_Sheva_Myllys

  1. Hope it is OK to mention a full name of a medical professional on this forum. If nhot, I hope I will be forgiven. I urgently need to get hold of Dr. Susan Schulman of Brooklyn NY, preferably via a reliable e-mail aaddress but all contact details will be helpful. If treated by her, still better, and of course do send it to my private mail or whatever the mailing system of the forum is called. Thanks Bat-Sheva
  2. We too tried Risperdal, as it is called here, as a symptomatic treatment. It was way back in 2008 after following a respiratory infection all symptoms returned and the very good efect of the IVIG was gone and the unbelieving neurologist who first did the IVIG decided to have it discontinued because he thought it was hopeless if it did not produce immediate and permanent results (beware of specialists who care not to learn of new things and who will not be in touch with those specialists who have the patience and will to keep on trying to help our children). Absolutely the same tendency - first weeks were OK, in some ways it even improved the symptomatic level, but then started our nightmare as it made Sandra psychotic to the extent I thought I had no choice but to admit her to a mental institution. She was badly violent, also towards herself, highly frustrated, even more than she is by the "normal" PITAND symptoms, lost contact with the environment. We had no specialist to help us but our GP turned friend who will never leave us decided this had to be stopped so we weaned her and replaced the Risperdal by a minimal amount of Paroxetine (Paxil, Seroxat), just to calm ehr down after the terrible ordeal she had. We use it to help the frustration her condition and the lack of medical understanding and will to help her and the loss of her young life (she is 20 now and this has been going on since she was 15) cause her, but in no way is it medication for PITAND or PANDAS symptoms.
  3. Based on Sandra's experience and what I have learnt in the past 5 years together with Marjaana, our loyal GP and friend, who supports us all the way, IgM rises at infection and goes down rather quickly, IgG is left high, and in Sandra's case kept on going higher and higher for the past 5 years. We did notice that it reacted and went down after every treatment that was positively effective in relation to the other visible symptoms. IgG went somewhat down (but stayed within the high range) after Mycoplasma Pneomoniae suitable abx (Azith, clarithromycin), Prednisone bursts, IVIG, but went up there after, esp following respiratory infections. It peaked in last December 2009, after almost 5 years, at ca 200 and then reacted beautifylly to now 7 months of Azithromycin, going first down to the 150 range in MArch 2010 and down to 39 in the end of June 2010. What we presure is that the rising IgG was due to hidden but active Mycoplasma Pneomoniae bacteria and that this is now under control with teh 500mg/day she is still taking. We were denied IVIG this year (the treatment got stopped way back in winter 2007 even though her reaction was good, because there was a backslide due to medical bureaucracy and the treating neurologist who wanted a quick and absolute recovery had enough of the lengthy truggle with the condition and thought it would be easier for him to classify her as mental and leave ehr untreated) because no one in FInland really knows what to do with the condition and no specialist is willing to contact those abroad with IVIG or PEX experience because "we just do not do things this way". It seems that high Mycoplasma Pneomomniae IgG and symptoms do react to antibiotics.Sandra did have actual pneumonia caused by Mycoplasma POneumoniae way back in spring 2005 just before all this started. When Marjaana and I presented specialists witht he IgG data we collected and the info on her reactions they dismised it and some said "IgG rises naturally for years" and so forth. We thought it was not a logical way of thinking and decided ABX was better than just leaving her untreated and suffering and thought that what was good for Sammy's Strep could possibly be good for Sandra Mycoplasma. We are still trying. Hope this information helps some.
  4. Sandra is 20.5 years old. She got ill at 15 She lost some 10 Kg in these years and is now some 53 Kg. Sandra was very normal and healthy until in 2005 Sandra had A influenza virus and there after pneomonia caused by MycoP. Symptoms of PITAND started some weeks thereafter. Coughing went on for months. When a friend who is a leading immunoneurologist in Israel suggested PANDAS MArjaana sent tests in Finland and we found out Sandra had Influenza A and Mycoplasma Pneumoniae - she was treated with a short course of Azith and was almost totally OK but we still did a short course of Prednisone - after these she was 100% OK for a year. PITAND symptoms returned after a resp. infection in autumn 2006. This time short courses of abx and pred did not yield and longer pred did not help either. After a struggle we got her on IVIG in spring 2007 (2mg per 1kg) and the reaction was fantastic. We kept doing maintenance IVIG and the no symptoms period was 4-5 months until the schedule got destructed by administrative issues, she got a resp infection, symptoms returned and the treatuing neurologist got enough of the problem. We tried symptomtic medication for movement issues and got her real ill (Risperdal), so we stopped and tried to get sb to help until in autumn 2009 we read Sammy's story, tried to get Sandra again on IVIG and as nothing worked and the situation was terrible, in January 2010 Marjaana prescribed 500mg/day Azith, which we have been doing ever since. So - no other symptoms besides PITAND in her health history IVIG done way back in May 2007, maintenance dose in June and July, nothing in August, maintenance in repeatred IVIG in OCtober and maintenance in november and December as wellas IV steroids. good reaction but treatment stopped. Neurologist decided it was mental (we still think he was mental to think so). Sandra's IgG kept on rising since spring 2005 and went down after treatments, then it rocketed to 200 last December (matched her terrible condition) and since we started Azith in January kept going down (we tested in Dec 2009, MArch 2010 and June 2010). There is sth on dosage on Azith on PAndas Central pages - worth checking what Dr T's opinion is about this. tHink he has the experience. May I ask did you treat solely based on IgG? Did your daughter have any symtoms (besides PANDAS stuff)? My son's IgG is over 300 right now. Docs don't seem to think much of it here... He is doing better overall since the start of our PANDAS journey a year ago, but not at 100% yet and I wonder is this mycoplasma thing the reason. Also, how much does your daughter weigh? I do have a script from him for Azith 250mg but I am not sure it's strong enough for an 80-lb boy. When I tried to switch from Augmentin he really starting sliding back, but now I'm thinking it might just have been herxing? Did you notice and increase in symptoms as you started? Thanks and so happy your daughter is doing well Isabel
  5. Hair pulling is a sign of OCD and in our case appeared way back in 2005 when this all started, gone when things were good after treatment and remained that way until next time PITAND got bad again. Last spring we tried buzz cutting several times (after she sheared ehrself with sccisors and got it terribly looking). Thne I bought NAC which she now no longer takes because she stopped pulling and the hair looks short and nice. As she has been on Azith for the padt 6 months I cannot say is this situation of no hair pulling the result of my behavioral work with her (I do it myself rather effectively), the NAC pills (e.g. by Solgar) or the Azith which got her MycoplasmaP IGG down from 200 to less than 40... When I see hair pulled I know her PITAND is active again.
  6. Her condition in January was appalling. She was totally bedridden and did nt function independently at all, no communication but for the screams and crying. Once we started abx it tooks some weeks to get her to come out of bed and cooperate. Each step took hours, but there were steps! so we were elated. In March it was obvious that the direction was right as not only IGG levels were going clearly down but her own view of the situation was getting more positive and cooperative and she was walking indoors with the aid of the yarn (gives her confidence, I suppose, as this was my invention way back when I had to walk her by the hand all the time. A couple of years ago she managed to let go of the yarn and walked by herself but did not dare getting more than some 300 m away from outr yard, later on there was a downhimm and no walking and then the yarn was back in use but not independent waling thereafter. The improvement on abx has been slow in the past 6 months and had its ups and downs but the net result has been positive so we did not mind the downs and did not get as afraid by them as we did in former years. When IVIG was denied it was a horrible blow for all of us and we still believe that if we could get her on it she will improve still faster. Will it hold, is hard to say, as it did come back several times, each of them following resp. infections, but Marjaana and I feel that it is worth trying as we know she can take IVIG well and there is no high intervension risk as in PEX. No idea if we ever manage to get a Finnish specialist to communicate with US experienced ones to get her the treatment. I mean to say, our problem now is less the PITAND (not that we like it or what it has done to her and our life, but we think that if nothing else, Sandra will manage to go the Sammy way and get well in the end, no matter how long it will take or how many times we will need to go downhill on the way to get to the desired result) but the stubborness of the Finnish specialists and their short-sightedness and limitations of thinking and lack of courage, and for those we know no medication or treatment. Medical specialists who are not concerned with the well ebing of their patient and her future are not worth of their education and position in society. Unlike the US, the Finnish system does not offer a mobility between medical specialists within centers and between centers... and with Sandra's condition no insurance company will give her private insurance - and then those spcialists available privately are exactlyt he same ones you get to see through the public system and the medical culture here is not one of a second opinion, open and multidisciplinary consultation and cooperation or active communication with the patient, so that our chance always depends on finding the single positive person thorugh fight and struggle. The neurology in the disctric hospital got out of the game from the start as for them this was either Tourette's or mental and nothing else could be ever considered. No discussions, no interest. The leading person at neurology in the larger Helsinki and its university hospital thought this was a quicky - and once he realised this required on going treatment and included ups and downs and studying in detail he too gave up IVIG, even though he saw positive results on the way, declared her mental and washed his hands off us living Sandra alone and out in the cold. The same can be said about the neuro in Tampere university and the nifection people in Lahti, so we are alone, Sandra, our loyal former school GP and myself. When she had the most recent downhill in later spring it was just when we all had some viral resp infection, so I think I can safely say it had some effet. In June I managed to get a GP in the public system to send her blood for MycP IGG because I wanted to see what the abx was doing - and the surprise was great. In fact I had a hunch something was oging on, even though she was not walking on ehr own I could clearly see and so did the rest of the members of the family and Marjaana that her concentration was somewhat improved and choreatic movements vanishing. We did see other compulsive behaviors creeping in and she would still not watch any moving picture on TV or the Web, but her behavior is better, her logic is beter, and 2 days ago, after weeks of brainwashing her softly she finally picked the yarn and started moving on her own (hope this will not be followed by another retreat and will result in waling without any support soon). I hope the experienced specialists could support tell Marjaana and me in deciding what to do re the abx - how long, what doseand so forth as we are really all alone here. Maybe the fact that we were let down and betrayed so many a time brought us to the point of having no choice but trusting a very long term abx approach, so that for those who cannot see much improvement in a month, simply hang on and keep doing it, unless you have a proven better choice. If we could still get her the missing immunomodulatory part of the treatment I believe that we will get her to university faster and she may still make it to medical or veterinary school in good time, and if we do nto get it, we will ahve to believe that what was good for Strep in Sammy's case will be good for Sandra in the Mycoplasma Pneomoniae case and keep pushing on.
  7. Just wanted to tell that following 500 mg Azith a day starting of mid January 2010 Sandra's Mycoplasma Pneomoniae IGG rate , which was close to 200 back in January this year was tested last month and was down to 39! Symptoms too have changed dramatically. Chorea is gone and hair pulling once again over but some compulsive behaviour is still badly present (she soes not walk unless holding my hand or a yarn tied to a real heavy object) and concentration is not at best. I am not sure if what we are seeing will take us back to what we saw way back in autumn 2005 after the first antibiotics and Prednisone, which got her symptom free for an entire year (until the next round started following a respiratory infection) and to the 4-5 months of almost no symptoms at all in Spring - autumn 2007 following IVIG, but I know that the antibiotics is working. Related to this Azith long term course we tested 3 times, once in early January 2010 (score was ca 200), once in March 2010 it was down to ca 140 and now in June it was down to 39. We were hoping to restart IVIG (after 2.5 years of no treatment) in April but the head of infectious diseases in our district hospital decided to block the initiative of his subordinate and as no Finnish specialist we know was willing to contact the known foreign specialists who greed and promised to help the process although no Finnish doctor but our GP (former school doctor and a close friend by now) knows anything about PITAND but for the selective articles some bothered to read. We hope we re at a breakthrough point. We so much hope for a Sammy-like result that will take our 20 years old back to normal life, school, university and a great future... One thing though, I would also wish that we all would remember always that PITAND and PANDAS has many faces and many sufferers and that none of us should exclude other causes but those which affected our own children and other symptoms but those presented by our own children and other treatments but those which our children receive and do or do not benefit from. For those who wonder, I feel strongly about the pro Strep party which excludes Mycoplasma issues en block. They harm Sandra's case and her chance to proper treatment and recovery.
  8. Sorry for the BOLD - I am not shouting at you folks, only stressing a point... I am mad at this medical system of ours and intend to fight them to the very end. The infection specialist (who got no actual PITAND or PANDAS experience but some active brain cells and a human hear) wanted to start the treatment this coming week and go on long term but THE HEAD OF THE CLINIC PUT A STOP TO THE PLAN BASED ON COST REASONS (not the US system, it is illegal and there is no question of insurance involved). War starts again on coming Tuesday! SO AT THE MOMENT WE AHVE NO IVIG. THE WAR BEGINS IN 2 DAYS. Will keep you posted.
  9. Sandra (20) IgG high for 5 years post known Mycop infection, IgG was 187 (pos limit 33) in December 2009. She started Azith 500mg/day in mid January 2010 and last week test was 50% down, severe PITAND symptoms are getting better all that time, not as much as the reduction in IgG but very promising. Still cannot walk without her "yarn" connection, but movement attacks are much farther between, shorter and less intensive. She cannot watch moving pictures but can read some and do some handicraft, and the best still, 3 days ago she started setting her alarm clock. It worked well only once but it is the intention which cunts. We were told ladt week that we could start long term IVIG (her last one was most successful back in spring-summer 2007 but stopped for no valid medical grounds and she deteriorated badly thereafter), but then the head of the clinic put a stop to the plan for cost reasons (not the US system, it is illegal and there is no question of insurance involved). War starts again on coming Tuesday!
  10. It seems to work. slowly, bouncing forwards, sometimes going a bit back, but the total is positive. Thanks for posting the SLOWLY part...i want it done yesterday, actually 10 months ago would have been better!! And i understand the part abou the outsider thing.......we used to get strep all the time but now, neg strep-all tests.....sitting on the foul line of Cam k test....and it was the support of this site that helped me keep pushing and finding dr K and T to Myco P..... I think it would help those on their journey to remember pitands....i know its just a word....but if its not included you really do start to feel like all of your other correlations to your childs illness may have been in your mind... I have a new one PISTAND if someone didnt' say this already?/// Pediatric infection-strep triggered autoimmune neuro disorders. we're pist over here!!! It is not only the Strep I am not in agreement with, as the problem continues with the Pediatric too. Sandra got ill at 15. She was not very pediatric any longer and was sent directly to the adult neuro and not to the pediatric one. "Interestingly" both had no clue of the condition, dismissed the idea that the infection she just had had anything to do with the sudden outburst of the variety of symptoms. The adult neuro were adamant this had to be TS (although the required time has not passed and there were more points missing than present, and the pediatric neuro was ingeniously inventive and said that at 15 Sandra suddenly developed "Abrupt ASpberger", and dared saying that without shame or shaking of her voice.
  11. Prevalence of IgG in the youth population is known and normal, nothing new there. What the article did not reveal is how long after an actual infection is the IgG supposed to be high and rising, and does an on going rise in IgG (say, for 5 years, as in Sandra's case) an indication of persistant presence of M-Pneomoniae. I think that is the question and concern.... As i stated before...just using my ds here.... if the scale it >99 neg 100-320 intermediat 320< pos and ds came up 631.....i do not want to wait to see if it goes to 700...631 to me in not a negligable amount. if his score was 300...i would maybe have less hope that this may be it...but it could be just the amount that is poking him with a stick... my tolerance at 300 is different from yours -------------- The Finnish border positive is 33-45 (below is neg. above is strong pos), Sandra is at the 200 level (she was sick with M-pneomonia way back in 2005). She reacted well to suitable antibiotics and steroids, later on to IVIG, but then was abandoned for 2 years after a relapse by a doctor who did not want to devote time and attention. In January we had the idea that if abx worked for Sami's Strep, it should possibly do the same for Sandra's m. pneomoniae. It seems to work. slowly, bouncing forwards, sometimes going a bit back, but the total is positive. I wish we knew about Sami way back in December 2007 and started long term Azith already then, and I hope we can restart long term IVIG soon. I do wish that the labs used the same scale though....now what if i go to a differnet doc and they use quest....is there some way to compare scales?
  12. Prevalence of IgG in the youth population is known and normal, nothing new there. What the article did not reveal is how long after an actual infection is the IgG supposed to be high and rising, and does an on going rise in IgG (say, for 5 years, as in Sandra's case) an indication of persistant presence of M-Pneomoniae.
  13. I could not agree more! IT is amazing how many specialists defined Sandra as a spectrum of mental conditions of all sorts and walks just because they read the PANDAS acronym and did not even bother to figure the entire picture. Best was a neuropsychiatrist who told us in end of 2008 that she had anxiety disorder (with a history of very positive reaction to Clarithromycin, Prednisone and IVIG) because her older suster was school bullied way back in elementary and junior high , and that PANDAS was all about Strep. No Strep meant for him a mental condition. As simple as that. Yes, and I will never forget the long que to neuurologists who thought I was only a bother with the insistance on this infection (Influenza A followed by Mycoplasma Pneomonia) she had just before it all started at the age of 15. I have tried to ask that PITAND or ITAND or whatever the name needs to be to reflect the actual condition be included, but got replies (also on this forum) that research funding is meagre for PANDAS and that any such change will cause confusion. In fact I think that PITAND or whatever that should be, no being spoken of poses a threat to the quality of treatment and future of my 20 years old daughter. Those doctors here who bother to read about the condition see the main stream, or worse, the anti PANDAS politics some doctors drive, and are afraid to diagnose or treat the already diagnosed elsewhere. I had to go twice abroad to have Sandra diagnosed correctly, tested and treated by proxy. For the past 5 years my life is an on going war against the medical establishment to accept that this is a real condition and a treatable one. That she may have a chronic condition but that need not be a debilitating one as it has been for so many years.
  14. Sandra had Myco-P way back in 2005, just before the whoe thing started. Got Clarithromecyn and was almost cleared of symptoms. Then Prednisone for a week and thereafter was well for a whole year. Got sick again in 2006, tried Clarithromecyn and short course of Prednisone to no avail, long term Prednisone with tapering, to no avail. Got IVIG in Spring 2007 and was immediately great. When IVIG was stopped for asmin reasons, an infection retriggered the condition. IVIG repeat + Medrol burst IV had a good effect, again stopped for admin reasons. The condition has been real bad between Jan 2008 and Jan 2010 Since mid January 2010 on 500mg Azyth daily, and seems to be improving slowly but steadily. We are hoping for a long term IVIg to start as soon as possible (meaning once the infection spcialist we got convinced this is the way to go (he would not dare Pheresis or PEX) gets his courage to start. Complicated story of Finnish medical bureaucracy). We may be adding steroid bursts, or then not. A lot depends on who he decides to listen to, Dr T and K and a few other "foreign experts" who got the experience, or a Finnish neuro, who got no experince. Sandra never tested positive to Strep, in all methods of testing, yet her Mycop-P IgG has been high all through the past 5 years ever since she had pneomonia and tested positive to it. I am glad the question of Mycoplasma Pneomoniea has now come up. Until now everithing was only strep and we often felt outsiders.
  15. Dear Greg Besides all the good ideas others have listed here, take him in your arms, calm yourself down and give him all the love and suport you can and brainwash him softly that this will go away. Do not fight it saying it is not true but donot reinforce it either. Tell him it is part of his illness to think so. Do not question him as it does not help. If this is OCD nothing like that works, but emotional support can and does make miracles. Remember that others have been through this before and managed to pull out. There is life after meltdowns. When they start, I normally tell myself not to dispare and remember, we have seen this before, we have got out of it in earlier times and there is no reason in the world we shall not get out this time. Mine is 20 (started at 15) and I sleep next to ehr as such times and close enough to hear if she cries of such at night, and she tells me it makes her feel safe and makes going through the worst periods. Not that I do not hear terrible things from time to time, I only "hear" them differently classifyingthem as they should be. Try to use humor. do it softly and avoid it at times of high lvel of irritation. I found out that calling the sounds she makes nice and kind nicknames made her smile. It sorts of tells her her condition is accepted for the time it has to be with us. that she is accepted and loved as she is, and then I keep on repeating that we are not going to give up doing all it take sto get her well again. I have found this very helpful. The same rule works for what looks like disobedient and defiant behaviour. IT is all in your hands and your decision how to relate to it. If you let the condition lead, it will take you and your son to very bad places, but if you decide that it is a condition that has to be made room for in our life but has to "fit in by our rules", than it is not a tragedy but a challenge and you can handle it. Take your son to be tested, never give up getting the right treatment, study the subject as wellas you can and find a good medical specialist to be your team mate specialist, and then get your own thinking on the right track. It helps. I promise it does.
  16. I think that PANDAS is an absolutely wrong name for the condition, because it delimits the group of "valid and accepted" patients. That is, they must be pediatric and have Strep, and if they do not, they are not valid for the club. My hunch is that this is a condition, like cancer, in which certain immune related processes take place and affect the brain and cause certain (long possible list) of symptoms and react to certain therapies which nowadays seem to be mainly antibiotics (per bacteria) and immunomodular therapies. Dr T. suggested at some point the name should be changed. What do you think?
  17. Have you ever considered or have the possibility to test for antibodies for pneomonia causing bacteria? Did your son tested positive to Strep? Adn again, what did you mean by "My thinking is that it could have started in the throat and migrated to the gut." I wonder if you mean intestinal pain and other digestive problems because Sandra certainly has them as well as joint pains (negative Rheumatic tests) and we were wondering could it be that the MycopP is somehow the cause for those.
  18. I do not know about other cases but Sandra clearly had pneomonia concurrent with Influenza A or right thereafter (post infection) and kept being weak and caughing hard dry caughs until we got the MycopP antibodies results and put her on Microlised antibiotics. We did not guess at the time that it will come back and did not know to guess that later on long term abx would be suggested as an effective treatment..... I wish we were. During the past 5 years, esp the last 4 as the first was symptom free for a whole year after the Zeclar and Prednison short course I have heard her caughing in that Mycop way at times but did not know to think it may have some information regarding the condition. Now that I am thinking about it, I certainly think it might and that her dog may carry it too. Should manage to find the time to have her tested (we have 3 abd she is the only one caughing dry at times, which we thought was hairballs) and getting to a vet that can run such tests is a huge thing in this small country town and I am so Sandra bound that time too is an issue, but it should be done soon. I wonder, how many parents can like us point the exact illness that triggered the entire condition, not the abrupt start of the symptoms. I also wonder what it is that has made so many of us believers is the single possible cause of the condition. Maybe Strep is not the trigger of the condition but only one that exacerbates?
  19. Dear Dr T. I jump onto the wagon as Vickie's message was a follow of my most recent on this thread, in which I complained about the past 5 horrendous years Sandra and we have been going through, I would like to ask if you think that a Zithromax (with or without other treatments) could still take place in her case. CAN WE STILL SAVE SANDRA? I wrote on list and to you off list and told her story. She had no immunomudulary since December 2007 when all specialists gave up on her (because they would not devote time and attention to study the condition) and had a disastrous episoe with Risperdal. Her current condition is terrible and she is bed-ridden. Following the new enlightment obtained by the Saving Sammy book our VOLUNTEER and FRIEND GP started her on 500mg Zithromax a day with the intention to go on long time and is helping me fight the system to get other, more sophisticated immunom. therapies if needed, which she cannot herself prescribe or give. We do not really know how to go on and hope to have some guidance. At the time Dr K thought her age and duration of the condition (starting at 15 and lasting then for 2 years, now 5) were a very negative factor in the prognosis. Do you think we can still save Sandra and what can we use to do that? Bat-Sheva Vickie, I think you hit an important point. From the vantage point of a doctor who is seeing about 100 PANDAS or PANDAS-like cases a month nowadays, I'm learning a whole lot about this disease very quickly. I'm learning something new every day. This is what makes this fun; playing some part in curing a child in need is also very gratifying and keeps you going. The sad thing is that, although I have tried really hard in academic settings to get med students and colleagues interested in this disease, I haven't been very successful. So at times you feel like a lonely quack. But then another "zithromax miracle cure" comes along and it keeps you going. Awe and wonder at the complexity of the human body and disease. How little we really know. Parents are far more interested in this disease than the doctors. I always bum out when I hear that a parent is told by a doctor that it can't be PANDAS if a throat culture is negative. The parents observations on this board are so much more sophisticated and accurate than 99.99%. You guys are the experts. You learn medicine from patients, not books or papers, but you still have to use the books and papers. Mostly, you have to think - who does this patient in front of me remind me of? Where have I seen this before? How did we get that previous child better? So you creep your way to an optimal protocol. So if we had to make a movie about PANDAS, one story would be parents empowering and educating themselves, using modern technology, to challenge and educate their doctors. In a sense, it's a shame it has to be this way! But in another, doctors should be ever open to be educated by their patients. Dr. T
  20. 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 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....
  21. 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
  22. I think that the reseatrch definition that lead to the "diagnosis" symptom list drawn by Swedo needs to be challenged. The P has no valid basis. Sandra was 15 when she suddenly developed it. The S may not be the only cause. There is in fact no proof that only Strep is the cause. Loking at Sandra for the past 5 years and reading all I can find on Mycop. I am convinced that she could be MycopP and not Strep at all (we still ahve to see what the recent anti-DNase test will tell us). I am certain Mycop started it. Was tehre Strep in the past? No idea. It certainly was not present when this saga started. Who knows how many people are out there who have been misdiagnosed and wrongly classified as TS or OCd or other mental health related conditions and still suffer. Could they still be helped? Can Sandra still be helped? I intend to find out, no matter what. Bat-Sheva
  23. 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
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