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Everything posted by lsad765

  1. Thanks to both of you. If it is OCD, I have had no luck in figuring out what it is. If you have any suggestions for how to get this out of a small child, please let me know! At 6.5, she is not terribly articulate about her feelings, etc., but also she's so touchy and on the defensive right now that most conversations turn into firestorms. The clothing issues are definitely a problem and she is miserable because of it, so I will take steps to address this. The only other thing is that she is saying is that she really angry, feels left out, hates everyone, and wants to "say mean things" to me and to her little sister, e.g. To me, that seems like she is feeling hurt/angry/etc for various and sundry reasons. Do you think this is the OCD itself? Or is this just the manifestation of feeling miserable? This is difficult to figure out and I think many of you know that there are no solid ERP therapists here in Northern NJ. I am taking her next week to a psychologist schooled in dealing general anxiety in children. I don't know how much it will help. If you have other ideas about how to talk to young kids about what their OCD issues are, I'm all ears .... (I should mention I have read the What To Do books and will re-read them again with DD to see if that helps). Thanks, as always -- EDIT: Posted this before I read your post, smartyjones. Thank you and I'm reading a sample of Explosive Child right now!
  2. Hi all, I haven't posted in a while since my 6.5-year-old daughter's OCD symptoms -- which were always relatively mild -- are in a pretty good place (for now!) thanks to Azith and therapy. But I've been reading many of your posts and continuing to learn from all of you. Although my DD's OCD is in a pretty good place, her behavioral problems are worse than ever. She is tantruming, crying a lot, complaining about school, complaining about home, lots of anger at me and her sisters and even friends, frustration with all of us and herself, feeling very "down,"etc. I could go on and on. In her defense, in addition to her pandas, we have had a lot going on in our house. Her twin sister is about to have reconstructive surgery on her nose from an injury when they were born preemies. She also has a 2 year old sister (and as you know, all 2 year old demand a ton of attention). Her father has a new job and is working very long hours. I recently quit my job so I can focus completely on the kids and a modicum of housework But with three kids, it's hard to give my pandas dd all the attention she needs. I've started implementing "special mommy" time with just her (and her twin sister to be fair). I'm taking her to a child psychologist next week, not for ERP or OCD therapy, just for play therapy and talking about her anger, etc. Also, I'm going to try a sensory gym again, since one of her OCD/sensory things that remains is clothing issues and since I'm hoping some positive one-on-one time with another adult could be good for her. Any other ideas from those experienced with this....? All the best and thanks as always --
  3. This happened to my DD6 the one time so far that she had a big blood draw! She felt so good afterward that she told us she wanted to do it again every week!!
  4. Hi everyone and thank you all for your thoughtful replies. There is certainly a lot to think about with this peculiar disorder!! For my daughter, she is doing fantastic with Azith and ERP, so we are going to continue with both for the time being until we are ready, with Dr. T's blessing, to try to wean her off Azith again. Will try Motrin/Arnica to support her body as we do that, in case the problem is inflammation. If anyone else has ideas for safe, proven anti-inflammatory support, please let me know. I should just add that -- for whatever reason, my DD has done remarkably well with the ERP! It has truly brought her back to the old cheerful, happy, confident, and easygoing girl we remember from 3 years ago! It may not work for everyone, but just based on my daughter's own experience, I would recommend at least giving it a try, even for young kids (my DD is 6). But to be fair, my DD's pandas is mild, she is not currently in a flare, and she is really committed to ERP and has taken it on as her own cause because it makes her feel so good. We are very lucky for all these reasons! Thanks again for all the input.
  5. Hi, yes, we read those books too, which were helpful for general ideas, but ERP therapy has to be much more focused and must follow an orderly course to work. And, yes, it is a form of CBT, but CBT is also more general. You must use ERP with OCD. Recognizing her obsessions and compulsions is the first step of ERP. Then you make a chart of each one she needs to work on, breaking them down into "smaller parts" if necessary. Then she starts to tackle each one slowly and deliberately. So first washing hands X number or times, then fewer, then fewer. Each time she manages to do it, give her a small reward. For example, we used a chocolate kiss, or a quarter, or dollar, or a little toy, or whatever you think is appropriate. Actually, it's best if you and she decide ahead of time what the reward will be. Make them small for each of the little accomplishments, and then when she conquers hand-washing completely, she gets something bigger, like going out for ice cream, or a special toy, or a movie night, or special time with you, or whatever she and you agree to. Make each of the tasks doable at first and work up to the harder ones. The mental ritual will be harder but approach it in the same systematic way. By this point, she will have success with the handwashing and will be excited and motivated to stop the praying ritual because she will see how good it feels not to be bound by these rituals. That was when my daughter really got on board with the idea of "getting rid of PANDAS" and took it on as her own cause. Then she would start to come up with the tasks and the approaches. And she is only 6. By the way, ERP stuff takes TIME! We spent at least an hour a day (even on school days), integrated throughout her day, working on these tasks and we also did the worry box and "worry time" every night. It was a lot to do but so worth it to see the reward of my daughter getting better. Just this morning, my daughter announced to us cheerfully that her PANDAS is completely gone! Her pride was infectious, so we cheered her on, but I know these things will come back, and taking her of Azith soon will present new challenges. So keep working on it and stay with it. You will make great progress.
  6. ERP is the most effective therapy technique for OCD. It stands for Exposure and Response Prevention. It is a form of cognitive behavioral therapy that is proven to be very effective for OCD and it is 100% safe. Many people on this forum have used it to great effect with their children. You can search the archives and the Internet for more information about it, but basically the idea is that you slowly and carefully expose the person to the very thing that they are fearing (exposure) and then they must refrain from the compulsion ("response prevention"). It is very hard work, especially for a young child, so with children it is very important for the parent to be not just involved but actively participating in the entirety of the therapy. Many people on this forum have worked with therapists trained in ERP and have seen great results with their children. However, they stress that it is important to find a therapist who is trained specifically in ERP and who is willing and able to start right in with the hard work of ERP with kids. Many people say that any kind of talk therapy with people/children with OCD is useless, and can even make matters worse, because it just dredges up and revisits the fears again for the child in question. The experts in this therapy say -- and I have learned this first-hand too -- that talking about OCD too much usually makes OCD worse. There is an intense program that a number of people on this forum have visited at the University of South Florida. It is a 1-3 week intensive treatment program, led by Dr. Eric Storch. Families who have been there have posted rave reviews about the program. My DD's OCD thankfully is not so severe as to warrant participating in that program. However, on the advice of another mom on this forum, I called Dr. Storch for his opinion on my daughter's case and he very generously listened and provided advice to me about how to take on some very intensive ERP therapy with my daughter at home. I'm proud to say that my daughter took surprisingly willingly to the therapy, probably because it put her in control of her OCD and because she very quickly had some very positive experiences in "tricking her PANDAS," as we call it (she is 6) by doing the very opposite of "what her PANDAS tells her she should do." It has been really amazing to witness the progress she has made in a few short weeks. As a guide, I first read "Talking Back to OCD," by John March. It is good to read as an overview, but there is too much information in the first half of the book about how to "talk back to OCD," which Dr. Storch thinks is a waste of time. Instead, he told me to jump to the second half of the book, which is about the exposures. And that is what I did. For example, my daughter's worst OCD symptom, and the thing that started it all with her sudden onset, is excessive wiping after using the bathroom. Her OCD tells her still is still wet/dirty and she feels she must wipe endlessly to get dry/clean. No amount of reasoning with her could get her to stop. It was a real compulsion. Instead of trying to convince her that she shouldn't wipe so much, I simply told her that PANDAS was making her do that, that PANDAS was keeping her from having fun/watching TV/playing with her friends/whatever. And that she had to trick PANDAS by at first only wiping 5 times, then 4 times, then 3 times, etc. Until I had her using the toilet and then not wiping at all!! The trick, according to Storch and others trained in ERP, is that you not only have the person face the fear without doing the compulsion, you then have them go BEYOND the fear and beyond their comfort zone to really show them that they can handle the discomfort/fear/anxiety that they obsess over. Before I started working on this issue, I told my daughter that we would be working on her wiping and that eventually, she was going to pee and then not wipe at all and just leave it wet in her underwear. I talked about how awful it would feel and how much it would bother her but that she would just leave it there and that she would be fine and that I would be there with her to help her. I am not exaggerating when I say that her face went white as a sheet when I told her this. But, lo and behold, after working on this slowly, diligently, and with lots of praise and cheerleading from me -- and with choice and timely rewards for working so hard at "getting rid of her PANDAS" -- I am proud to say that my daughter has done this many times now with no problem! As a result, she is now spending a mere few minutes in the bathroom pee-ing, where before each bathroom visit would drag on endlessly and she would emerge still uncomfortable and miserable! It has made a huge difference for all of her obsessions and, most important for her self-esteem and her general happiness!! Good luck -- there's a lot to learn and it is a lot of work, but it is totally worth it!
  7. Thank you so much for sharing the details about your daughter. Thankfully, my daughter has not had persistent strep. She actually amazingly only had one bout of strep this entire season! She was already on Cefdnir and it cleared after 5 days of Azith. I'm not sure if she had dilated pupils with the strep but she has none now and no fever now, low grade or otherwise. I really appreciate hearing about your daughter though and thank you for the advice to try weaning again, this time with Motrin/Arnica. I will definitely try it and see what happens. Thx again
  8. Hi Mayzoo! Thank you for your quick reply. My DD still has her tonsils. I have not yet discussed this with Dr. T, but my ped says she doesn't need them out unless she has had strep 3x in a year for 3 years in a row or if she is getting sick enough to be out of school a lot. She is just shy of the first criteria and not close to the second. Her tonsils don't look bad either. They are not chronically red or swollen. Strep is definitely an issue for her vis-a-vis OCD symptoms, but it doesn't seem to be such a problem that it warrants getting her tonsils out at this point. At the least, I should first try weaning her off the Azith while doing Motrin/Arnica first, as you suggest, which I did not try last time. I just kind of went cold turkey on her because she was doing so well. She went from 200 mg 2x a day to 200 mg 2x a week. Btw, our ped is what I would consider a conservative but thoughtful guy. He was open to the pandas diagnosis and, as he says, believes in anything that works. He told me to try her off the antibiotics but definitely go back on if things got worse. Mayzoo, what was your criteria for taking out tonsils? What made you decide to do it? If anyone else has suggestions, please post and many thanks in advance!!
  9. Dear seasoned parents -- I look to you for your opinions on what is going on medically with my DD6. She was diagnosed by Dr. T with pandas 2 months ago. She has been on Cefdnir, then Azith since then. She improved a little on the Cefdnir but more so on the Azith. Then she went to a prophylactic dose of Azith and after 5 days, started to backslide. Dr. T had us put her back up to a treatment dose and she improved within 24-48 hours. Why? Is it because she has some kind of "occult" strep infection that hasn't yet cleared and that the Azith is still combating? Or is it because the Azith is acting as an anti-inflammatory? And how can I figure out which one it is? Would the quick turnaround back on treatment-dose Azith be indicative of one or the other? I will follow up with Dr. T but would love your input too. For DD, she never had high strep titers, but there is a clear relationship between strep and OCD for her. Her acute onset of OCD 3 years ago came after strep, and her second exacerbation, which was worse, came after bad strep that wouldn't clear with the typical antibiotic treatment. Reviewing her medical records and my journals, I now see that every strep infection for her has been followed by worsening of OCD symptoms. I see that there is some evidence that Azithromycin can have an anti-inflammatory effect. Since getting the pandas diagnoses, DD has had one strep infection (while on Cefdnir). The infection and her increased OCD symptoms that went along with it cleared very quickly with Azith. She then went back to a kind of "baseline" for her with regards to her OCD symptoms. This leads me to believe that perhaps her many past strep infections not only caused the OCD but inflamed the brain enough so that she has never gotten rid of the OCD completely. What do you think of this theory? Regarding inflammation, I have used Motrin with her to pretty good effect. I also give her Arnica tablets a good bit, because she has a lot of "growing pains." Arnica is known to have anti-inflammatory properties. Her pandas symptoms seem to respond to the Arnica tablets a bit too, though it could be a placebo effect, since I talk up their efficacy to her alot My own mom gave me Arnica cream as a kid for bruises and muscle aches after long hours of playing soccer, so I knew something of it. The use of Arnica cream is totally non-controversial and has been used for many, many years. There is probably less medical evidence for the use of Arnica tablets, which are a homeopathic remedy containing trace amounts of Arnica. Arnica would be poisonous if ingested at anything less than trace amounts. I should note that we are not looking into any other causes for our daughter (Lyme, etc.) right now. My DD has relatively mild OCD symptoms that are improving tremendously with the Azith and ERP. Back on the treatment Azith, and with continuing ERP, she is a good place right now. Of course, I want to figure out how best to manage her symptoms going forward and especially if we see another backslide. What I really want to do is get her off the Azith as soon as possible. My thought is to give her another week or two of treatment dose Azith and then try to take her off it again, perhaps by weaning and using Motrin and/or Arnica as I wean. Since my daughter's case is mild and she has made such great progress with ERP, I am willing to try this again soon, but I want to give her body as much support as necessary to get her through the weaning. Any advice about how to proceed -- and if I should be considering using any other safe and proven anti-inflammatory with her -- would be most appreciated.... Many thanks, as always --
  10. Thank you so much for this response. There is definitely a learning curve with all of this! I can't say enough how helpful the expertise of those like you have informed the little I have learned so far. I just ran out and got some Olive Leaf Extract as a start. Do you by any chance know how to figure out the dosage? My girls are about 36 lbs, 40 lbs, and 20 lbs. Thanks again --
  11. SF Mom -- Thank you very much for this. My PANDAS DD6 has high Coxsackie titers, but I don't believe they are very high -- Dr. T's report showed that two of the Coxsackie A's were 1:800 and two were 1:400. She tested negative for everything else (Lyme, etc...). I think am going to take both girls plus DD6's twin sister, who has very mild OCD symptoms (just one small one, really), to a holistic doctor recommended by a neighbor. My understanding is that one of his biggest recommendations is a gluten free diet. Have you or anyone else tried this with success? Right now, it seems that the at-home ERP that I have been doing with my daughter is the number one thing that is helping her right now (probably aided by Azith). I have been very intensive about it, and her symptoms were relatively mild to begin with, which I'm sure makes it easier to deal with with ERP. I've been guided in this by Dr. Storch at USF and the advice of a couple of other therapists, as well as some very savvy mothers from this very board! I am stunned at how well it has been working. Given this, I think this will be the main focus of my treatment protocol for my PANDAS daughter for the time being, though I appreciate that if I can get her and her sisters' other immune problems under control, that can only help. It is definitely weird that DD2 has had Coxsackie 3 times this winter, and I want to figure out what is going on with her regardless. Thanks again --
  12. Hi all -- As always, I would appreciate any input from those of you with similar experiences. My non-PANDAS DD2 (I think -- probably too young to tell) has never had strep but has had Coxsackie 3 times this winter! She is sick again now. Had fever, red dots in the roof of her mouth, stomachache (from what I could gather from her), and crabbiness. My DD6 with PANDAS. who has been making great gains in the last 2 weeks on Azith and with ERP, has been struggling more since DD2 got Coxsackie. My DD6, per Dr. T, is actually on Acyclovir right now, because of high Coxsackie titers herself. She is near the end of the 10-day course. Questions: 1. Our ped doesn't do anything for the Coxsackie. Do you think an anti-viral would help my DD2? 2. Is there alternative remedy for DD2 to alleviate symptoms and/or fight the Coxsackie right now? 3. Is there alternative remedy to prevent Coxsackie in DD2 in the future? I want to prevent it not only for her sake but also for the sake of DD6. Thanks in advance, as always --
  13. Hi all -- Based on your experience, how long after first starting abx for PANDAS should you switch to a prophylactic dose? I'd like my DD to stay on a full-strength dose for awhile, since I think we're finally seeing some good results! My DD6 was diagnosed by Dr. T 1.5 months ago. She started on Cefdnir immediately -- 250mg 2 x day. She is about 40 lbs. After 3 weeks, she got strep while on Cefdnir and switched to Azith for 5 days (not sure the dose, prescribed by her ped after positive strep), which cleared the strep. Then she went back on the Cefdnir. Five days ago, she stared on Azith again at 200 mg 1 x day, and two days ago, she started on Azith 200mg 2x day. Since starting on the Azith, she has been doing great, and especially since the 2 x a day Azith (only a couple days, but great results so far)! For those of you familiar with Dr. T, do you think he'll give me a longer dose, or will he want to switch right to a prophylactic dose? Last week, his assistant was telling me adamantly that he would only give a prophylactic dose. He was literally on his way out the door to tend to his ill mother, who sadly passed away this mornig, when he wrote me the full-strength prescription for Azith, but just for 10 days. Given that Dr. T has a lot going on right now, and given that I don't have anyone else to write another prescription (ped definitely will not), I'd like to call him telling him exactly what I would like. Maybe a month? Two months? More? So long as it is considered safe, I'd like to be aggressive with the Azith, assuming DD continues to do well on it. What do you suggest? Thanks in advance --
  14. Thank you, everyone! I cannot thank you enough for your replies, advice, and most especially, your support! I think I -- as much as my daughter -- needed to hear that I can do this. I have gotten that here and through personal conversations with some of you -- so thank you! I have renewed confidence that my daughter and I are going to beat this thing once and for all. Whether we can manage it on our own or whether we need to call in the big guns remains to be seen. I'm starting on my own in the meantime, following Dr. March's book. I told my daughter that I "talked" to a new doctor named Dr. March (she liked the name, since she's learning her months!) and he helps kids get rid of their PANDAS. She liked that, and I'm going to be referencing him as the "greater authority" when it comes to my ERP therapy. I'm hoping that will sound different and more authoritative to her than just having her Mom telling her what we need to work on all the time. I also called USF and left a message for Dr. Storch to get his opinion about whether he thinks we need to go to USF or can do this on his own. I understand that he can be very helpful in evaluating the situation. Of course, if it's not necessary, I'd rather not going to Florida but I look forward to hearing his opinion on my daughter. Already, my daughter has agreed to wear her "most uncomfortable" pants to school (they are actually sweatpants -- very comfortable, but not her one go-to pair of pants, the ones she relies on like a security blanket because she knows exactly what to expect of them). She even wore her socks "upside down" today, just to trick PANDAS, as she says. I couldn't be prouder of her. Getting her to wear underwear and more important, to stop obsessing about the wet feeling after peeing are going to be her biggest challenges. Someone suggested that the ultimate for her, per ERP, would be to wear underwear soaked in water. Naturally, the idea sounded wild to me at first but now that I have thought about it, I can see exactly why crossing that hurdle is exactly what she needs to do to learn that she can handle the feeling and get through it to the other side. I mentioned it to my daughter, and frankly it made her look a little pale. But I wanted her to get used to the idea that some wild things are to come and that -- as you all and the books say -- "she can handle it"! I'm feeling really pumped about this whole thing now, though I know there are (and have already been) some real ups and downs. I couldn't do all this without you all on this board giving needed advice and support. Thank you!!
  15. My daughter's PANS background: My 6.5-year-old daughter was diagnosed with PANS by Dr. T a little over a month ago. He started her on Cefdnir right away and her symptoms started to improve about 2 weeks later. Then she got strep while on Cefdnir and switched to Azithromycin. After her strep cleared up, she went back on the Cefdnir (since Dr. T was unavailable to write a longer prescription for Azithromycin), now she is back on Azithromycin and I'm hoping to get Dr. T to write a longer prescription for it tomorrow, since it looks like she was doing even better on it than on the Cefdnir (once the strep had cleared). My question: In the meantime, I've been learning everything I can about ERP and the approach really speaks to me as a practical, effective one. I'm ready to start ASAP, and after reading "What To Do When Your Brain Gets Stuck" and starting to read John March's "Talking Back to OCD," I decided to employ a few of the strategies with daughter and she took to them amazingly well, to my pleasant surprise! My daughters OCD symptoms are in the mild-to-moderate range (e.g., no school refusal although she went through a long spell where she begged every morning not to go and complained that she hated every day and it was so hard, etc.) I would like to continue with the ERP at home approach since -- as I understand it -- there are no terribly good therapists practicing ERP in our area (Northern NJ) and I don't think the severity of her OCD merits a visit to USF, although maybe I'll change my mind about that, depending on my success at home? Also, my daughter has taken an early liking to the ERP stuff I've done at home so far, indicating, I hope, that we can see some real success. After just a couple of days, I see that along with the successes, there will be some failures too though, and I see that I probably have already once pushed her a little too hard by starting to work on fighting a second OCD problem when I should have encouraged her to have more success with the first issue before adding another. (Although in my defense, it was her, not me, who suggested moving to the next item on her list!) My questions are: Has anyone else done this and could you share your story about it with me? What is your opinion about the pacing/timing of starting to fight additional issues? And do you think I really must get a capable therapist on board, if only to play a supporting role? And if so, can anyone recommend such a qualified therapist in our area? Here are my daughter's main OCD problems: 1. She avoids going to the bathroom because after wiping she feels wet even though she isn't and because she believes she has to wash her hands for a long time afterwards, and then she believes her hands are wet even after drying her them for a long time. The whole experience is distressing to her so she simply tries to avoid it and that is why she rarely goes to the bathroom at home or at school. 2. She avoids most kinds of clothing, and especially underwear, because she cannot get them to feel "just right," ("just right OCD" being one of the lesser known OCD categories -- at least, we only just learned about it!). 3. She tries to avoid brushing teeth because she believes she has to brush her teeth for an excessively long time to be sure they are clean and so that she stay health. She believes that after she is done brushing and plenty of rinsing, she still has toothpaste in her mouth and she is afraid it will do her harm if she swallows it. Other, lesser OCD symptoms: 1. She must cover her body at night or else a witch will in her bed will "get her." 2. She avoids sleeping in normal bed covers and instead has very particular blankets that must be arranged in a very specific way, because she cannot get it to feel just right (again "just right OCD"). 3. She avoids going into any dark room or any other part of the house without me (this is more just straight worry/anxiety, not OCD). 4. She gets on and off irrational fears of germs (not happening now, ever since being on antibiotics). 5. She gets worried about a variety of things begin "dirty" (including food that is "browned," fruit that has any bruise, the surface of the dining room table at any given time, if she drops something on the floor, her baby sisters "drool" coming in contact with her or anything belonging to her.) Thank you in advance for any input. In the short time since I have discovered this forum, I have used it extensively and thank everyone for generously sharing their experiences here!
  16. Hi LLM - Thank you for your response. Right now, we are focused on addressing strep with abx (my DD has had lots of strep) and sensory/OCD stuff with some cognitive behavioral techniques. Methylation problems seems like a whole other issue! Could I ask you for your recommendation -- how do I do to educate myself on this? I've read a very little about it and it seems complicated and not well understood. Do you have a doctor or specialist help you with this? Is this something that Dr. T could help with? I guess I'm asking, where do I begin?? And should we do the C3d test? Where would I start on that? I'm sure I'm not the first new poster to say that this is feeling a little overwhelming! Thank you in advance for any further input....
  17. Hi thanks -- my daughter has had this problem for a while and we have checked for UTI before and it has never been that. I'm afraid it is really behavioral/sensory/OCD. But thank you very much for your reply and your input.
  18. HI all -- I'd appreciate your opinion on my daughter's behavior at night. For the past three nights, my daughter has been waking up thinking that she has wet her bed, but when we check, she did not wet her bed and is completely dry. She has never done this before. One of my daughter's OCD symptoms in the past has been that she feels wet after using the toilet and wipes obsessively or tantrums because she wants to change her pants because she says they are wet even when they are not. My daughter was just swabbed for strep a couple of days ago, and it was negative. Her little sister recently had mild Coxsackie, but my DD never had any symptoms of getting it herself. Does anyone think this could be a new OCD symptom signaling a new illness (perhaps a virus?) I don't know if there is anything I can do to help. She is already on Cefdnir, although she got strep once already on Cefdnir. Perhaps we should switch back to Azithromycin, which she was on for 5 days after she got the strep (this was prescribed through her pediatrician). Her doctor is Dr. T but I know he is very busy and otherwise occupied. I can try to reach him for advice, but I don't know if he will be available to respond. Unfortunately, our primary pediatrician is not helpful for the PANDAS stuff, only for straight strep (I'm looking for a new ped). I also wonder if I should try acyclovir, which Dr. T prescribed but we haven't tried yet because the Cefdnir originally seemed to be helping before she got strep while on it, and Dr. T suggested we wait. Can you take acyclovir and abx at the same time? Is that safe and is it a a good idea or will it then not be clear to us what is helping...? I guess I should really check in with Dr. T about all this too. Still, I would appreciate the input of seasoned experts like those of you on this board in the meantime. This is still new to me -- she was diagnosed a little over a month ago, and I'm quickly learning that little is clear cut when it comes to PANDAS/PANS. Thank you in advance....
  19. Airial95, it so interesting that you say this. In the past, my daughter has felt sick many times but with no identifiable symptoms other than feeling rundown and unwell. She would always say that she has a "cold" though she would have no cold symptoms at all (no runny nose, etc.). She probably just saw the rest of us getting sick with colds and labeled her own feeling of being unwell as a cold (she is 6). Now, I'm looking back wondering if she could have strep any/all of those times? I wish this had occurred to me sooner, but we just put the whole PANS/PANDAS picture together 3 weeks ago (about 3 years late!). I am keeping a daily log as you suggest and will continue this. My main concern now is finding an antibiotics that will help her and that she can stay on for awhile with the hope of continued improvement in her OCD/sensory/behavioral symptoms. I was a little surprised that Dr. T didn't just go ahead and give us a longer prescription for the Azith (he just gave 5 days and I am to report back to him at day 4), so I'm hoping it won't be a problem to get a longer prescription of Azith or something else. As everyone on this forum says, at this point I'm willing to do anything to help my little girl. I feel terrible for blaming her behavioral symptoms for the past 3 years on discipline, sensory stuff, anything else -- without knowing that PANS/PANDAS could explain it all!
  20. Thank you again so much for your responses. My daughter is bouncing back today on Azith. We'll see how it goes tomorrow going back to school (the real test). I'll look into the home strep tests though I worry I may not know how to do the swab correctly. I am thinking of finding a new pediatrician too. We have Dr. T as our neurologist/PANDAS expert, but I'm afraid our pediatrician's office is not terribly supportive. They all seem a little skeptical. Thanks again for the encouragement to take my daughter for the strep test yesterday. I had no idea she could get strep while on antibiotics -- that threw me for a loop but was a good lesson to learn. Now I will know to test her when she is feeling ill. Amazingly (to me), her PANDAS symptoms appeared out of the blue before she even had a fever. I didn't make the connection but now know that if I see a relapse/flare, I should check for strep asap. Thanks again to everyone. This forum is amazing and I appreciate the time you took to respond to me!
  21. Thank you again! I just took for her for the culture and ... positive! Ped started her on Azithromycin but just for 5 days. Just checked with Dr. T who said to do the 5 days and check in on day 4 about how she's doing on it vis a vis the strep and her OCD/behavioral symptoms. Am hoping to then continue with Azithromycin or antibiotic because my daughters' OCD and behavioral symptoms were noticeably improving on the 18 days of Cefdnir.
  22. Thank you for the info! I made an appointment for a throat culture for this afternoon. I won't mention the Cefdinir upfront like you suggest! If she is positive though, what should she go on? What did you do when your son tested positive while already on antibiotics? Thank you!!
  23. Hi all, My daughter was diagnosed with PANS by Dr. T 3 weeks ago. She's been on Cefdnir since then, and in the last week was starting to show real improvement. Until yesterday. She got sick with a fever and sore throat. No runny nose or congestion, so it doesn't seem like the flu. Is it possible that she could have strep, even though she has been on Cefdnir for 3 weeks?? I emailed Dr. T with this question, but I don't know if he'll have the time to respond. Should I take her for a regular strep test at her pediatrician? If she does have strep, would it show up if she is on Cefdnir? And if she does have strep, what would we do? Try another antibiotic (noting she is allergic to penicillin) ? This is all still new to us, so I appreciate any input. Thanks!
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