lsad765

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!

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 --

This is wild! My husband is an architect, his dad an engineer.

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!!

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.

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.

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!

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

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!!

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 --

Thanks for this!

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 --

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 --

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 --

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 --