Not_the_Same

Dr. T is a great Doctor. Best wishes -john

Please remember i am just a comment on the internet.... not a DR. (how do i get this spell check to work?) The first one was about 4yrs old and the 2nd (had symptoms 2months later) was 13yrs... it took about 6 - 8 months of abx. We used a full spectrum Abx (Biaxan)after we tested, showing micoplasma and strep. It is important to use the correct abx... not all can penitrate the cellular walls . I wanted to keep things as simple as possable, and wanted a doctor not to make a mountain, with complicated solutions.There is plenty of worry time, combined with research---- use the research. To recap... I used various doctors opinons, I sifted through the mire,weighed my options and managed. I ... by nature have learned not to believe everything that is presented by the main stream. Test ----Try to identify the infection (The source if possable) Kill the infection ( this may be most difficult) considering common perscriptions are like car warranties >too short replenish the gut with healthy gut flora

I wanted to say thanks to the producers of this forum. I remember when this disorder, just about turned my family upside down. Thanks to the people in this group, and especially DR.T. We are symptom free for about 3 yrs and counting. One thing i remember from back then, was i did not see many conclusion storys. I would like to offer one. These are just my opinions , based on facts we went through. I do not have the time to get really detailed, so please pardon my shortcuts. I had 2 children affected within 6 months. It happened around the time of the H1N1 scare.... The time of a big vacination push in our local schools..... Remember that? Our first case was with our youngest, he first displayed "complex vocal tics" This is when i considered my self baptised by fire, and scoured the internet for truthful information. I found this forum and within a Link to Dr. K....( I will not use names of Dr.s) He provided breif assistance, with a Short script of Augmentine.(Immediate temporary improvement 1 month of so) Too short in my opinion. We discontinued with DR. K, after he discontinued with us.... I was not on board with I.V.I.G.....He Did not really responed to my emails or my lack of Insurance. During the time of the initial course of ABX, I studied the comments on this web site. I then solicited DR. T for his knowledge and help..... Everthing is now in order thanks to DR. T. I believe some cases can be Cured( yes i used the word cured) with a strong dose of the correct ABX. How has our life changed? No packaged foods No GMO We consider everything we put into out body. I wish you all the best of the best, on your journey. btw here is a link to a new person sharing vids on pandas. Thanks again to you all. -john

After reading many of the articles, if not all, and watching the various news clips and programs, found by links provided by most of you all. I have painted a picture in my mind. We had very little information when we first heard of this Mystery illness in Leroy. "Tourette like symptoms"These were the google keywords that brought me to ACN 2 years ago. It sparked emotion in many of us, because it was remarkably familiar to us. This Mystery illness appeared to be shrouded by secret closed door meetings amongst the New York department of health, and there minions. They sited HIPPA as they gave little or no answers.Did HIPPA even apply here? Each day, I have checked this site to find another piece of information. Ahh to see conversion disorder,I thought oh these poor girls, what kind of treatment will they receive? They said the equivalent to "it is all in there head". With the original diagnosis,I think they dismissed infections, along with various other things. It was not until Dr T appeared , did i hear of attention given to the infections. Dr T found infections or indicators of past infections, that could trigger these symptoms, and he plans to treat them. If the original Dr.s saw these infections, did they attempting to treat them or did they dismiss them? After reading the article in EAMom's linkAnd some from the other night,I started to realize that it is very possible Dr T. has his hands full , not only with diagnosing and treating the afflicted,but he has to be careful of those who have Egos that need mending. The conversion disorders diagnosis, is not convincing to me against the fact that 6 of the 8 had elevated ASO titers. Shouldn't these elevated titers provide a red flag of some sort? This simply means to me - Where there is smoke there is fire. I wanted to mention Dr T said "pandas like illness" i don't think he said a definitive Pandas or pans. I took this as meaning an infection... be it strep. mycoplasma or some other infectious agent triggering the auto immune response of tics. I am confident Dr T. will treat the patients with the correct dosage of Abx for the correct duration of time to clear the infections. This cure will have nothing to do with the placebo effect. I have noticed that it is not only the infectious microbes under the microscope at this time, but possibly Dr T also. I look forward to reading about the dramatic improvements with all of misdiagnosed. -

Hello Melanie, A while back before having my children treated . I was very interested in this abx Doxycycline , I was beginning to gather information about Doxycycline, but had no further need to continue. The abx they needed removed there symptoms. one of bit of information i found interesting was that is was used in successful treatment of Gulf war veterans exposed to infectious agents. My link Another - It crosses the Blood Brain Barrier My link I have no other bits of information, but wonder if it has been used in successful treatment against the symptoms prevalent in this forum. best wishes.

article http://www.wgrz.com/news/article/150087/37/Update-on-Tourettes-Like-Illness-in-Leroy It seems the NYS Department of Health does not want to reveal too much information. I would like to know a bit more. What is the diagnosis? What is the treatment? I can not help but wonder, if the students at that school, had been given a vaccine recently, I mean something like the swine flu vaccine. I just wanted to share this story with you people on this forum, if you had not discussed this yet. If any of you know more about i would be interested. best wishes to you all _John

Hello ACN I remember searching this forum for answers a year ago,when my family was blindsided by this disorder. First affecting my youngest now 5, then my oldest at 13. Funds were limited, faith in doctors vanishing, but in the end, with the commits and insight from this forum, both kids are back. I would spend hours like many of you reading post after post. Dr. T. had thrown many valuable pearls of information out on this forum, before he left, and this is when I understood that he was not a doctor just prescribing protocol,but he was still studying and learning, and most importantly he was sharing his information. I do not want to sound like a commercial for anyone, my intention is to share a possible solution. What did we do? After switching to Dr. T. We found the correct abx for the correct duration.(Not as easy as it may sound,my first Dr. offered a path that i feel we would still be on) My Children have been off ABX since last June.Nothing Else. Maybe we are just lucky. I hope you all can find your remedies with the wisdom on this board. John

I wanted to point out this bit of information. It may be useful for you. This video shows how fillings may be a cause for illness.

It seems that main stream media has finally grasped the idea that a common infection can cause complex disorders. The often misdiagnosis will lead to respected professional opinions suggesting treatment with ssri or other masking plans of action. Alternatively, an aggressive course in the correct abx, may prevent a life of psychiatric medications. I would also like to mention, I do believe, the flood of GMO and Non Organic food supply, into our every day diet adds to the probability of a heavily medicated society. This is what i believe. Thanks for the article Vickie.

Congratulations to all! -John

Hello, Without giving too much of an explanation, I think it would be wise to not add any more variables than are necessary. 1 cook at a time. You may be correct about trying (NAET). This is what you feel, but like you stated; " Since I'll be starting antibiotics in just a few days, not sure how much we'll be able to tell happened as a result of the NAET,". Doctor K has been right on the money for my son (4), and i would, if i were you, let him work his magic. All the best to you -John my youngest has no tics now Btw I now plan to explore what NAET is, considering my little one is allergic to many things.

in our case, My 4 yr old son, that developed a "complex vocal tic" since Nov 2009. He has reduced the frequency of occurrence 97% since treatment with DR.K. -John *negative on the strep swab *elevated titers

Thank you for putting this work in. I am sure it will be as helpful as your other Posts. -John

I will let you know, what our plan is after we get a few more answers. I wish your family the best -John

Thanks for the wording on the school update. My wife will use it. to answer your questions Did your sons have a documented strep infection? My youngest(4) test results show group A not detected the anti/streptolysin was 921 Did your younger son do IVIG, or only antibiotics? only antibiotics- youngest responded immediately to Augmentin and is on nothing else at the present.He seems to be healing . I will update you and any who ask. Thanks again and wish your family well. -John

Hi, I think ,My youngest son 4 yrs old and I, are a bit further along the same road here. I would have to count the days to be accurate but he started with a vocal tic Nov 15 2009. started Augmentin Nov 26th, and now off the medicine, making a nice recovery. I am not saying we are finished, but i am comfortable with the progress and the direction. My 2 cents make sure to get treatment from a specialists in P.A.N.D.A.S.. There is a post somewhere on this forum about how many are starting to treat P.A.N.D.A.S., and i agree with that poster ,I personally would rather deal with someone who has done the research. I am learning the recovery is slow, and feels back and fourth for a while. I also remember not feeling too thrilled when his prescription was ending (because on this forum i noticed many were on longer), but followed the doctors orders.From reading your post, i understand your child was on medicine for even less time than mine. On my last visit to DR. K concerning my other son13 just this last monday, My pandas 4yr old came along and i managed to slip in a few questions. "How long until the remaining symptoms completely stop" , he said possibly 4-6 months. I also slipped in a comment that "i was not against another course of Augmentin " which he (shook his head) did not agree with or think necessary(fine with me). I hope your son gets better soon. -John

Hello, Thanks for the start of this topic. This seems to be the next chapter of what my family is now encountering, and we are new members of this forum. My youngest son(4) has been healing nicely since Thanksgiving with treatment (DR. K), But now my oldest Son ( a very young 13) Has the above mentioned Anxiety issues. There is the possibility i never noticed the onset of this disorder starting at a much younger age, or maybe it started when my youngest became ill Nov 15 2009. I just don't know. He has displayed no obvious tics, but a suspect cough that seemed to linger.( now i refer to the cough as a possible tic) We took him to his original pediatrician for the cough months ago(before we knew of pandas and DR.K), and did not give too much attention to his anxiety, because he has always been intense and it seem only slightly out of range. Now things have escalated. He has developed anxiety that makes him tremble, as if he just drank a bunch of coffee. "intrusive thoughts are present in most patients".Yes "Behavioral regression(s)".Yes/ maybe (he battles his 4 yr old brother)It even crossed my mind these guys were ticing off each other. "Insecurity and separation anxiety (adolescent type)."Yes "Chronic fatigue commonly present". Yes "chronic non-specific gastrointestinal symptoms". Yes this was last weeks symptom. "Insidious development of an overwhelming anxiety ". Yes this is our most obvious symptom at present His GI symptoms have faded (last week) and now we are in a elevated anxiety stage. He agreed with & insisted on his turn with Dr. K which we scheduled, and have completed. We are now waiting on the blood tests results, while on 5 days of Prednisolone . Then Dr K will direct us on what to do. day 1 of steroid he says "doesn't feel as shaky". but in my observation, he seemed a bit squirrely . day 2 (today) he appeared fresher this morning.but still shaking as he drank his Prednisolone.( he can not stand the taste) He has missed school the last three days which i suggested, and feel is perfectly fine. I am interested in reading opinions . Should he miss school? My wife feels it is important to tell the school everything, is this something we should do? He did faint in school while watching a medical film (in science class) some time in October.Now he is excused from watching these films .This happens to be the last class of the day, so now he has anxiety the whole day in school anticipating science class.He marks the day of fainting as the start of all this. Does anyone have a guess on how this may play out. Thanks to all. -John

I make a valiant attempt to understand the problem, but found comfort in this quote " Science - if it doesn't make you feel stupid your doing it wrong". here is a good article http://jcs.biologists.org/cgi/reprint/121/11/1771

Hello, in our case Starting Nov 15 2009. My youngest son (4), started the with the same symptom. he developed a "complex vocal tic" (repeated a phrase). Our doctor(Dr K) put him on Augmentin for a little over 20days.(starting the 26th of November). It has cleared his Vocal tics(to about -maybe 3 tics a day) to bring him to 95% of his old self. The healing seems to be slow but steady, and i am still counting the days. His moods occasionally a little rough still, but i am not sure if this is still a symptom. I feel if we can continue undisturbed, he will become symptom free. I think Dr.K nailed this one one the head with the treatment/dosage . I would not have disagreed if he felt to put him on another 10 days, but i had a hunch he had enough medicine too. Life is starting to return to normal, the only difference is i have become a hawk, trying to spot any invaders. I wish the same for all of you. -John

Hello everybody, (probably too soon to add anything but...since I am in the middle of at least 9 good days) I would like to say thanks again for all the input here. I have read these replies, and would agree this is a tough battle for us all (for some tougher). At the time of my first post, and start of this thread, my little guy (4) was finishing our doctors prescription. It has now been 10 days since he has been off the Augmentin and is on no other medicine. I have no answers, and choose these words as if walking on egg shells. Here is what we are doing: We pray We avoid too much television. We avoid Foods with ingredients he may be allergic to. We avoid Foods with ingredients that seem unnatural (no fast food or processed items ,no soft drinks) We make sure he has plenty of water and rest. (Strangely the word "rest" appears as reset to me) We avoid anybody that is sick ( i know some of this sounds overboard but, this is my plan for now ) pro-biotics ( blueberry juice from Trader joes) this was not planned but was given the whole time while on the Augmentin , by coincidence. I know some say it is not good and some say it is good. If he is in the middle of a melt down , I hold him and help him. I would like to add vitamins amino acids or fish oils, but do not want to add anything to the list of changes just yet. I have reduced this to a question of balance, because this is all i have . I am learning from your experiences that tomorrow ,next week , or next month things can change.. He still has complex vocal tics, and is easily aggravated, but these things are fading in occurrence. Things seem to be heading in the right direction. I know we are not finished. but I believe the possibility of, this being no more, or manageable. When i have anything else to offer as information, i will post . John

We are on day 22 of Augmentin 250mg twice daily .Current prescription almost finished maybe one or 2 more doses. That is it for now. What next ? I saw immediate improvement within 2 days, and are in the Saw pattern of improvement....good day, good day, not so good day. We are dealing with Complex vocal tics about 1/3 in occurrence, from before treatment. The moods are still rough.

Hello everybody, I would like to introduce myself, and my reason for being here. My name is John . my 4 yr old son is currently in treatment for P.A.N.D.A.S. . We are fortunate enough to live in Chicago land, and to have found Dr K.. (thanks to the pandasnetwork.org website and Google keywords results). Our story in a nut shell. Nov 14 2009 may have been the beginning, I noticed high temp(to the touch) while moving him to his bed, but since he did not express any sickness during the day, we gave little thought to it. Nov 15 was the first tic, "Complex vocal tic" that was a Sunday, one time. That evening i did searches like ' what are the symptoms of tourettes". During The week by Tuesday 20-30tics a day or more. After sifting through many pieces of information, we found treatment from Dr K. on the 25th of Nov 2009. I have been reading most of what is being put on this board on a daily basis, and this has been very helpful.Thank you. I have read 1 success story member, which gave me a much needed boost in optimism, and i feel there may be others like my self, that could use these stories. The "sawtooth path to healing" explanation was very helpful. Are there any others out there? if so can you point me to the thread, or please post your story here. Thanks again John