Kayanne

Dr. Latimer's perscription called for 5ml/mg (after some searching, we found a pharmacy that only had 1mg/ml in stock--I'll try to remember the doses based on Dr. Latimer's original script) Day one: 2mls Next week: 2mls twice a day 2nd week: 1ml twice a day 3rd & 4th weeks: 1ml once a day We refilled the perscription, and the pharmacy had orderd the 5mg/ml solution, and they wouldn't flavor it because it was so concentrated...it is nasty. I only needed it yesterday, today and tommorrow, and then she is done. Yesterday, I mixed it with juice...still had to pry her mouth open....today I'm going to try mixing it with soda. The 1ml/mg perscription said it was generic for pedia-pred. It was a mint flavor, and after a couple of times of prying her mouth open (she was refusing to eat anything at the time), she started to take the medication with no problem...If I have to do this again, I would definetly use the pedia-pred instead.

We believe that this is my dd6's first episode (or the first that was disruptive enough to be noticed). She has now been on prednisone and azith for a month. We have definetly seen a decrease in her emotional lability. Her focus has returned--she can eat her food without being prompted (at her low point she wouldn't eat at all--we were feeding her), she can do the independant things again, when we tell her to (ex. dress herself, brush her teeth, put on shoes and socks). She is more verbal...she tries to speak at home with us, but still has a hard time getting her words out. Socially, she hasn't interacted with her friends since the spring, that now they just don't notice her...and she isn't able to speak up enough to be noticed...I keep trying to get her to practice at home, but when we are at the playground she clams up again. She still cries if she knows that she has to go to the bathroom...for some reason it is stressful for her. I stopped making her go because she eventually ends up on the toilet anyway--she hasn't had an accident yet. But she won't get herself off. She needs to be told that she is done. She still has problems with decisions and does try to avoid saying "yes" or "no", although sometimes she will say them. Overall, my husband and I believe that she is about 75-80 percent recovered. She has only been on 100mg of azith (she is 44 lbs)...I wonder if that should be increased...

The gummy fish I saw didn't have a sugar coating, but I made the mistake of reading the label out loud in front of my 5 yr old and when I said fish oil, he wanted nothing to do w/ it. So, since an 8 yr old can read, hide whatever you buy:) Do you know what store the Barlean's is sold at? My husband bought it at a health food store called Nature's Garden--I think it might be a franchise because they sell vitamins and minerals with the same label. There is also a website listed on the label www.barleans.com It is a blend. It also has omega 3 and 9 in it. The pediatric psychaiatrist who told us to give her the omega 3 said to aim for 1200-1500 mg a day. This only has 185 mg of DHA per teaspoon...I was only giving my dd one a day and two gummy fish...not enough. We bought another orange flavored oil, that has 750mg of DHA per teaspoon...so we are going to try to add it to jello or something. it is natural Factors RxOmega-3 Factors.

Dr. Latimer put my dd (44 lbs) on 100mg of azith along with prednisone. She only has two days left of the steroid, but enough refills on the abx to get us thru september. But I'm concerned the dose is too low to help prevent a breakththrough infection, and too low for the anti-inflammatory and immune-modulating properties to help her. Dr. Latimer said that she should be about 95-99 percent back to her original baseline by the end of the steroids. My Husband and I don't feel that she is there, and of course I'm really scared that she won't fully be back to her old self. I have an email out to Dr. Latimer asking her what is next, and what does she feel we should do with the abx. I personally think it would be better to get her off of them if the dose is too low...what is the point really? But I told her I am open to increasing the dose... We believe that this is her first episode (or first one that was disruptive enough to be noticed), do any of you have thoughts about IVIG or Plasma Exchange so early in this? Or should I push for a higher dose of abx to see if we get any results? I'm so worried....god bless you all for your input on this forum...it is a real comfort to me and my family...hugs to all!

After multiple strep infections in my house this spring (or the same one that was hard to kick), I insisted that the ped do back-up cultures after the rapid strep came back negative--during the same visit, they opened new swabs and took a second specimin to be sent out for culture. I'm not in the medical field, but I suppose if a swab had enough on it, you could use if for both the rapid test and the culture. Anyone in the medical field have any thoughts on this? I'm wondering because my kids hate it, and if I can advoid doing it twice in a visit, that would be great! Also, several parents have posted that their children's symptoms flare up with other sicknesses after the initial PANDAS episode...I don't have enough experience yet, I'm still trying to get my daughter fully recovered from her first episode--at least we think it is her first. Good luck!

July, 2006--first time strep was in my house: My son was 18 months, and the only symptom he had was hives...the doctor didn't think his throat looked like strep, but he did the rapid test anyway, and it was positive. The ped was surprised, he did say during that visit that it is rare for toddlers to get strep...

We use Barlean's Kid's Omega Swirl Fish oil. It is a lemon cream that we squeeze right onto a teaspoon. All four of my kids line up for it...my dd reiminds me that she needs to take it. My husband bought it, so I don't know what it cost, but we did waste a lot of $ on products before we found this. I also give them two gummy fish and two gummy vitamins in the morning...they do prefer the lemon oil over the sugar coated gummy fish.

Michele, Has your son's bottom been tested for strep? I know that the skin can be tested because my son's finger was infected, and the doctor swabbed it, and he said it was strep...he looked in his throat and it was red...that's when 3 of my kids were put on a 10 day course of antibiotics with another one (Rifampin) added on days 7 thru 10. Last Monday, I took my son to an allergist. The doctor said that he is my "allergic one". I asked if he could possibly have a yeast overgrowth that was contributing to his allergies--he is 4, and has needed to be on antibiotics six times. The doctor didn't think so because he said that he doesn't have the symptoms of a yeast infection: sore, itchy bottom & diarrhea. I'm still not convinced that he doesn't have an imbalance because his seasonal allergies are much worse than my girls, and he gets large dry patches of skin behind his knees. Maybe, your son's problems are a result of a yeast overgrowth. I think his symptoms are severe enough to hope that his doctor will try to ascertain what is going on. Perhaps he could perscribe an anti-fungal such as Nystatin or Diflucan. However, I still think probiotics will still be key in establishing new colonies of good flora. I read somewhere on this forum that oil of oregano is a good anti-fungal too...but I have no experience with it. One thing that we learned recently is that the bacteria can starve to death sitting on a shelf in a probiotic. If you buy a refridgerated one, the cold puts the bacteria in stasis so that you will have more live cultures by the time you ingest it. Of course the person who told my husband this was a clerk at a health foood store, and they have a financial interest in promoting their products--Dr. Latimer said that Florester was the brand that was used in the studies that proved that probiotics can be beneficial. Florester is not refridgerated. I was at a website that sells a probiotic called Threelac...they claim to have more bacteria that is aggressive in "eating" the yeast, and they claim to have their bacteria micro-encapsulated in ordered for it to reach the intenstines in tact. Has anyone used this?...their claims seemed too good to be true. The website is: http://www.candidasupport.org/index.html Best wishes, Karen

Alex, Thanks for thet information that Dr. Geller has told you...I can't wait to read your separate post about your visit...very intriguing to me because I am struggling with the idea of having my daughter on long-term antibiotics.

I've been meaning to put in an update...real life got a little crazy...she is halfway through her course of prednisone, and we are seeing some real results now. At first it was just baby steps, and I was a little discouraged because I was under the impression that the steriods brought quick results. All Dr. Latimer said was, "You should see some improvement in a few days." I guess my idea of improvement was a little too optimistic. But we did see some small changes right away. Two days into the treatment, she had her first day back at school, and it was the first time in a while that she ran up to a classmate with a smile on her face. The lowest point, however, was when about a week into taking the prednisone, she screamed and fought me when I took her up for her bath. She just huddled in the corner of the tub screaming, "No, mommy, no!" while I washed her. All I kept telling myself over and over is that she was not well...It was extremely scary. In the past, I had struggled with gettting her on the toilet, and dressing her, but this just seemed to be on a whole different level. Another mom had told me that her daughter had some rages while on the steroid...so I was trying to keep that in mind too. Today was her first day of the local "tot lot". She goes to the playground for two hours..they play games, do crafts, eat their lunch and occasionally take field trips. The last two years she loved it. We kept all my kids home from the program last week because we didn't feel she was up to it. She did much better than we expected her to. Getting ready this morning was really easy...she did almost everthing herself. Her focus is returning--it no longer takes constant prodding to get her to remember to eat the food in front of her (for a little bit we actually had to feed her like she was a baby), she did a great job on the craft by herself. A few times she has answered with a "yes" or "no"--that is huge! Her creativity still seems to be lacking. She used to write pages and pages of stories and poems, and make matching drawings. She hasn't written or drawn anything independantly in months--it seems to cause her stress to try to do it...I stopped trying to prod her because I'm afraid she may be taking a real hit to her self-esteem. Socially, she still doesn't interact with her friends on the same level that she was at prior to this...I keep thinking that we were so lucky to have this happen when she was 6 and not 3 or 4...because we would probably be looking at an autism diagnosis. Comparatively, I believe she has a more mild case of PANDAS, and that may be why we didn't see the immediate results from the steroid that a lot of the parents who mention the "steroid burst" have reported. When are you going to see Dr. Latimer? I think it was the best thing that we could have done...I do also have an appointment with a rhumatologist in August. That was the direction that my daughter's pediatrician sent us...he made some phone calls to try to find a doctor who believes in PANDAS. I'm not really sure what a rhumatologist can do for my daugher at this point, but I figured it couldn't hurt. Her last positive strep test was on May 8th, and she was put on 10 days of Clindamycin/2 tsp.--3 times a day. After that she has had two negative cultures, so if you consider the timing...she may be in the natural waning of the symptoms. Personally, I strongly believe that the steroid is the reason that she is improving. Dr. Latimer has also put her on 100mg of azithromycin once a day (DD is 43 lbs). Truthfully, I'm not sure if that really is even a factor here. It is such a low dose, could it be contributing to her improvement with it's anti-inflamatory and immune modulating properties? Is it enough to prevent another infection? Am I creating conditions that could result in a resistant stain of strep in my house (this was one of Dr. Latimer's concerns)? I worry that by giving her the azith that I am killing all her good flora, and setting her up for a life-time of health issues...we bought a good pro-biotic from the health store, but I still worry that it's not enough. I've had a healthy life so far, and my kids have been so healthy prior to all the strep this spring...I feel so ill-equipped to deal with this--as I'm sure you all can relate to that feeling. Best Wishes, Karen

I've had a few PM's asking how my daughter's appointment with Dr. Latimer went, so I thought I would just post to let everyone know that we were very happy with the visit. She is a wonderful person, her office staff are friendly and helpful, and she does truly understand the whole PANDAS thing. She gave me a report at the end of the appointment. In her report she called it "Pediatric Autoimmune Basal Ganglia Disease caused by Strep". In the course of our conversation, it became very obvious that she treats a lot of these kids, and she gave us examples of kids who are doing fine now...we needed to hear that!!! She suprised me by telling us at the end of our visit that my daughter has a very very mild choreiform movement. Currently, she put my daughter on a month of prednisone and about three months of 100mg of azithromycin. She said we should see improvement in her behavior within a few days....well as of now I think we are seeing baby steps of improvement. She started the steroid on Saturday (6 days ago). We have had some really difficult behavior from her (refusing to do essential things, and screaming and fighting me when I make her), however, it seems to have stopped yesterday afternoon (I hope). I think it is hard to assess if this is a side effect of the steroid or not. Truthfully, I was hoping for more improvement, but I think we are heading in the right direction. She believes that my daughter will be very close or at her previous baseline by the end of the month...if not she said we should consider IVIG or Plasma exchange...but since we think this is her first episode...she dosen't think we are anywhere near those treatments yet. She said to me "We are very accessible here." when I expressed concern for possibly needing more antibiotics. She said to keep her informed by email. I had some questions that I emailed to her on Monday morning, and she responded very quickly. One of the questions I had was why she put my daughter on such a low dose of azithromycin (compared to what I've read on this website). She said that a case could be made for not even putting her on the antibiotic because her 72 hour throat culture came back negative on Friday morning, and that since there previously was so much strep in my house....she doesn't want to create a resistant strain. Also, she felt it was better to start at low dose. Over all, My husband and I are very glad that we went down to see her! If any of you are not sure...I hope this helps a little. On another note, the infectious disease specialist that we saw at CHOP told us to take my daughter to a pediatric psychiatrist (for me, that's when the tears really started!)...so we also were traveling down that road of treatment. Well, after asking around, the only person that kept being referred to us was Dr. Robin Altman. We met with her the Tuesday before we were going to Dr. Latimer. I kept thinking that it was going to be a waste of time...what was a psychiatrist going to do for us except try to prescribe psychiatric drugs? My husband and I were surpised, when she said that she was positive that this was a case of PANDAS. She fully understood the nature of this disease...and instead of drugs, she recommened supplements: Omega 3's for brain development; selenium, magnesium, and zinc which are believed to help a little with anxiety. Then she said that we should cancel my Daughter's follow-up on June 12 because she doesn't think it will be helpful to evaluate her until she is out of her episode...that's when I realized that she really understood what was going on. She knew we were heading down to see Dr. Latimer on Friday, and as per a previous conversation that I had with Dr. Latimer, I told her that I expected my daughter to be put on a steroid and antibiotic. She whole-heartedly agreed with this course of treatment. We left the office thinking that when my daughter is "stabilized" we would follow-up. On Tuesday this week, Dr. Altman called to see how we made out at Dr. Latimer's. She was pleased that it went well, and when I mentioned the follow-up, she said that it was not even necessary. We should only schedule an appointment if we feel that our daughter has returned to her baseline, and still has some underlying OCD that we feel could be helped with an SSRI. I told her that we were more likely to stick with the Cognitive Behavioral Therapy first, and she thought that was an excellent idea! So if anyone wants to make an appointment with a pediatric psychiatrist....I would highly recommend Dr. Robin Altman. She is located at Sinking Spring, PA...just outside of Reading, PA...an hour and a half north of Philadelphia. I just want to say THANK YOU to all of the people who responded to my first post...without all of your advice, I would be waiting to hear from a Rumatologist who my Pediatrician heard second hand believes in PANDAS--- and my daughter would not have gotten the help she needs. I know that I'm going to need advice in the future, and I hope that I can contribute some help as well! God Bless you all! ~Karen

I have four children, and my son had impetigo for the first time in mid-January '08, and he broke out with it again February '09. It makes me wonder about the yearly cycle thing. That was the start of all of our strep in our house this year. He was on a 10 day course of antibiotics, and then in March he was the first to show signs of a strep throat. All ###### broke loose after that---several perscriptions later...I hope the step is finally out of the house! Can I get Manuka honey at any health store? Every once in a while, my son gets a spot that reminds me of impetigo, and I put neosporin on it, and it seems to go away...I strongly suspect that he has strep is in his skin. Does anyone know if the Bactroban can be used all over as a preventative measure, and if this would eliminate the strep from his skin? Or maybe the Manuka honey could do that? My Pediatrician believed that he could be a carrier, and simultanously put three of my kids on a 10 day course of antibiotics, and added Rifampin on days 7-10. On my son and non-Pandas daughter, it seems to have done the trick...they had negative throat cultures (for my pandas daugher, it took another 10 days of antibiotics to get her clear). But with a negative throat culture...how can I convince my Ped. to put my son on a longer course of antibiotics if I belileve it is in his skin? I worry that my daughter might end up being "sensitive" to strep in her environment like many of the children I read about here. ~Karen

I'm so sorry that you are in this boat with all of us! PANDAS is so new to me and my family....I only found a direction after I found this message board at the end of May. The people who participate here are wonderful! I was desparate after a frustrating meeting with and infectious disease specialist at CHOP--seveal posts have said that CHOP was not very helpful! On Friday, we drove down to see Dr. Latimer. She was AWESOME! We live and hour and a half north of Philadelphia, and it took us 2 hours and 45 minutes to get to Bethesda, Maryland. She is a pediatric neurologist who really understands PANDAS. See the post "found a specialist--Jackpot!" by mommd. I would have to diddo everything that she posted! Dr. Latimer's office number is (301) 530-9200. Her website is www.washingtonheadaches.com I wish you the best of luck! ~Karen

Thank you for that information. I believe that my daughter (6 yrs old) is in her first episode. We are seeing Dr. Latimer tomorrow, and I plan on posting how it went! Best of luck to you!

Colleen, PANDAS is completly new to my family. When my daughter's behavior started to change, I was telling my sister about it. She kept telling me that her daughter is "just like that"..."she still can't make a decision"..."she cried for the whole second half of kindergarten, and only told us years later it was because she was afraid after the boy next to her vomited". With the best of intentions, my sister was trying to assure me that these behaviors were somewhat normal; however her daughter never saw a drop in her performance in school or social behavior the way my daughter has. Best of luck!

I don't have the knowlege that you all seem to have about the particulars of PANDAS...since this is so new. However, I personally think that I will try to get a cardiac workup for my daughter because strep is nasty, and can do many things to the body...and one well know effect is heart issues. Just because she has PANDAS, doesn't mean I should preclude all other possible side effects of a step infection. My sister's daugher had a strep infection that shut her kidney's down when she was in the third grade. Six years later, she had to have laparoscopic surgery because she had tachycardia (rapid heart beat). Of course, there is no proof that the strep caused this; however now that my daughter's PANDAS has surfaced, my sister and I have been reading more about it, and it makes one think.... Another anecodotal line that my mind has been drawing recently is the higher incidences of mitral-valve prolapse among people who have anxiety and panic disease (The Anxiety Disease by David V. Sheeehan, MD, pg.82). I do not have a science/biology background, and if I can see a possible relationship...I'm sure that researchers are exploring the possibility of a link.

I'm really happy for you!! My daughter is in her first episode...and we are driving down to see Dr. Latimer on Friday. We only live 2 1/2 hours north of her. We are scared that she is getting worse...and are anxiously awaiting our appointment. I spoke to Dr. Latimer on Tuesday and she said that she needs azrithmycin and a steriod burst. When I told my Pediatrican, he said that he would call her to discuss it. However, they weren't able to connect, and he was going on vacation, so he called Hershey Medical Center (PA). He said that he called a couple of Pediatric Neurologists there. One of them is "one of the best in the nation", he said. Neither of them believe in PANDAS. A Physcian's assistant from one of the offices gave him the name of a Rumatologist who believes in it...he told me to call there. After speaking with Diana Pohlman, I knew I didn't want to mess around seeing a lot of doctors who are not familiar with PANDAS. Your post just confirms that we are doing the right thing. I am still going to call the Rumatologist to get an appointment. I feel that I need to try every avenue that has been suggested to me. I'm also going to take my oldest daughter to the Rumatologist because she also had strep several times, and now she says that her feet and knees really hurt. My Mother's brother and their mother both had ruematic fever, so I truely belive that this is a genetic flaw. Thanks for sharing! Good luck with the Pex!

Mom md, Thanks. I am going with my gut. Diana Polhman spoke to me yesterday, and then she spoke to Dr. Latimer--she asked that I call her. I spoke to her last evening, and she was very helpful!! I was expecting my pediatrician to call me today anyway to let him know what a letdown the visit to CHOP was. She told me to tell him to call her. When I spoke to him today, he was very cautious about the "steriod burst" that Dr. Latimer had recommended. He would like proof of swelling in the brain before he prescribes it. I told him that sounds reasonable, and if there is a test..let's get it done! He agreed to call her, and then to get back to me. I haven't heard from him yet...but that was 1pm...I think it is reasonable to give him until tomorrow afternoon before I start to hound him! I'm really hoping that "no news is good news", and that his is carefully considering what he has been told! Good luck on Friday!

The study that the doctor was likely referring to was Swedo's own 1999 study that was entitled "A Pilot Study of Penicillin Prophylaxis for Neuropsychiatric Exacerbations Triggered by Streptococcal Infections. BIOL PSYCHIATRY: 1999;45:1564–1571 ." http://intramural.nimh.nih.gov/pdn/pubs/pub-6.pdf The conclusion of the paper says, "Because of the failure to achieve an acceptable level of streptococcal prophylaxis, no conclusions can be drawn from this study regarding the efficacy of penicillin prophylaxis in preventing tic or OCD symptom exacerbations. Future studies should employ a more effective prophylactic agent, and include a larger sample size." (emphasis added) When Swedo talks about this study, she says the compliance (whether someone took the drug each day) was poor. The problem with penicillin is if you miss even a single dose you are not protected for 24 hours. Swedo set about to fix this study in 2005, where she did achieve prophylaxis with two antibiotics showing their efficacy. "Antibiotic Prophylaxis with Azithromycin or Penicillin for Childhood-Onset Neurospychiatric Disorders Biol Psychiatry 2005; 57: 788-792" http://intramural.nimh.nih.gov/pdn/pubs/pub-9.pdf This is known as an active placebo affect. Clearly your doctor did not actually read either study. I've placed links to both papers here in case you'd like to give him the actual references to read.... Also, I recommend reading the Kirvan and Cunningham's material that I cite here: http://www.latitudes.org/forums/index.php?showtopic=4785 I'd like to also underscore EAMom's comment that there are no actual studies that anti-psychotic drugs or CBT are effective with PANDAS. I can imagine conducting studies to test whether these methods work, but it's sort of amazing that doctors are willing to prescribe these untested, often offlabel, and non-blinded methods while ignoring the actual evidence-based research. Not sure what else to say except thank goodness you had a pediatrician who had read something about PANDAS. Best Regards, Buster Thank you so much for the information!! Everyone on these message boards has been a God-Send! My husband has experiance with SSRI's and he knows first hand what they do to a 30 yr old brain...he and I are very very hesitant to go down that road with a developing 6 yr old. Thanks for your input on that...it makes no sense how people can claim that an SSRI is helping a PANDAS child, when it takes 6-8 weeks for the drugs to really begin working, and by then (hopefully) an episode is winding down. Of course, I'm not an expert...and maybe it helps with the underlying natural propensity toward anxiety that a lot of these kids already have--but that is why we started her with a Cognitive Behavioral Therapist. My husband believes that if he had these skills as a child, things for him would have been smoother. I don't believe that having her see a CBT will stop the PANDAS episodes (well, she is still in her first one--I think it's her first). She saw the therapist yesterday, and the therapist reported that she was "difficult"--not surprising to me! Her brain just can't do it right now--I've taken the midset that it's like having a broken leg...you wouldn't insist that a child walk on it because you know they can't. Well, her brain is not capable of some things right now, and I don't insist. Since we've changed our mindset on this she seems much happier--at home anyway. Thanks again, Karen

I'm a little confused as to the "theory" behind using long term antibiotics. I certainly understand the need to eliminate the strep infection, but how do the antibiotics help against an assult of strep antibodies attacking the brain? I understand the use of advil...it worked wonders on a swollen tendon I had in my wrist 10 yrs ago. Thanks for taking the time to respond...I truely appreciate all of the input that I have been recieving!!

I have 4 children, and 3 of them have tested positive for strep 3 times (rapid-strep test). Becca is the only one who tested positive a fouth time. After the second round of positive strep tests, I asked if I should return for a follow-up, and I was told no. By the third round, the kids were put on Rifampin, and I was told that would take care of it. I even had my sons (ages 4 & 1-1/2) in for their well visits after the my 4 year old finished the Rifampin, and the doctor said their throats looked "great", so he wouldn't do a rapid-strep test. I then breathed a sigh of relief, and began to focus on Becca's issues. Ironically, My Husband and I were in to see the same doctor for a "talk" consult about Becca earlier that day. I thought the "infection" part was over. On the morning of Friday, May 8th, Rebecca mentioned just once that her throat "maybe hurts a little". That afternoon, was the last time she tested positive. On the following Monday, I insisted that the doctor do a rapid-strep on my other three children, and when they were negative, I insisted that he also send out a culture. They also came back a negative. So it seems that the Rifampin did work for the other 2 (my baby never tested postive, but was perscribed a 5 day course of OMNICEF on March 11 because his throat also looked red). But to answer your question simply, no, I have no evidence that she was ever free from the initial infection. I do not know what you mean by "antibiotic effect". Could you please clarify this for me? As far as blood tests, the doctor ordered CBC, C-reactive protein, strep titers and thyroid. When I asked if we should do a screening for any vitamin or mineral deficancies, he kind of "snorted"--I believe that I do want to find a Nautroupathic MD to run a nutritional anaylsis. (pardon my spelling) Thanks for your words of encourgement! As for antibiotic effect, I think she had a positive result with her last round of medication. Last week she had her last dose of Clindamycin (3 times/day for 10 days) on Monday afternoon. It seemed right around then, that she was able to say "yes" or "no" without much thought. When she couldn't make a decision, there wasn't a blank stare...she was thinking about it. Her after-school ritual seemed to "relax" a little. She has recently been very consistant with pulling out her lunch bag, and putting her folder on the countertop, and for a few days she didn't empty her book bag, and she even chose to go sit in front of the TV withoout washing her hands--granted she kept them in fists--but it was a break from her ususal routine. However, on Thursday, we received an email listing her behavior changes from her teacher so we could take it down to CHOP with us, and her teacher seemed to think that she was getting worse. She wasn't even trying at alll...just staring...the crying fits had stopped...and she can't do a single task without being prompted. After I read the email, I realized that this was also true at home. Her crying has started up again yesterday, but she doesn't seem to have any ability to think independantly...she must be told that it is okay for her to be done a task, or to start a task.

THANK YOU! THANK YOU! I went to the website...it has only confirmed (in my mind) that my daughter is struggling with PANDAS. The Infectious Disease Specialist at CHOP said that she didn't have OCD and/or a Tic disorder, and so far, there is no evidence of a "waxing and waning" pattern. If she gets better, and then gets strep again, and then presents the same symptoms...then he would change his diagnosis....very generous of him, don't you think? I am going to contact the doctor from that website. I would also like to get in touch with Beth Latimer, but a google search only came up with a doctor in VA. Are you sure she is in Philly, and if so, do you have contact info? I agree that psych. drugs are not a road that I want to go down with a 6 yr. old child! Thanks again! ~Karen

Thank you for posting this information. I am going to pre-order the book. Much of my family is in Philadelphia, which is very close to Marlton NJ. Thank you for also posting these doctors contact information!!

Thank you so much for your advice. I do believe that it will be helpful. I am going to speak to my children's doctor when the weekend is over. I believe that because he was willing enough to make the link to PANDAS in the first place, he would be willing to consider the antibiotics, if I can give him some more information on it. I had read somewhere else, that children with PANDAS many times have a family history and/or propensity toward anxiety, but I can't remember where. Do you know where you heard that? - edited to remove personal information