dcmom

I concur with Dedee... I have two pandas kids. Both initially remitted after a month of daily (250 mg) of zithromax. IMHO when dealing with pandas, you need (at least one) pandas doc. Unfortunately, most have to travel. You need to develop a plan. It is often trial and error, and initially, you probably need to try one new thing, and give it a month, not changing any other variables to see if it is effective. (In my opinion a plan would be: try Augmentin for one month, if not enough improvement, move to zithromax daily for one month, then add a month long prednisone burst, then re evaluate). We have also seen situations where my kids get "healthy", but they hang onto some (not all) of the ocd. At this point we need good erp therapy, to come around to 100%. This is all extremely overwhelming to start; know that you are not alone. You will feel better when you have an experienced doc (or two), a therapist, and a plan.

I have two daughters with pandas. I have been doing the following with both (one is 42 lbs, one is 80lbs). Both were off all antibiotics, and were great, much of the summer. When they started school, we put both on prophylactic zith, 500mg, 2x per week. When I see an increase or reappearance in pandas symptoms, within 24 to 48 hours (I wait till I am sure it is not just a bad morning, but I don't wait long.) I give them a z-pack; one dose of 500 mg, followed by 4 days of 250 mg, along with 5 days of regular advil dosing. If this doesn't do the trick, and symptoms are increasing, or have increased and plateaud at an uncomfortable level, I immediately contact the doctor to consider oral steroids, Iv steroids, or further treatment. I am working on finding a local, knowledgeable, therapist (who takes insurance) to help jump on any ocd increases quickly with some erp also. Hope this helps.

Hi Karen- Sorry recovery is rough My pandas daughter had a T&A. Her recovery was relatively smooth. I babied her for a few days. Unfortunately a week later she had a pandas flare up from surgery. I think being on the clinda is great (we didn't do that, this was 2.5 years ago). We used a month long steroid burst, which brought her out of the T&A episode. If you see worsening into an episode, I would consider steroids...

Ellen- I am heartbroken and at a loss for words. I wanted to encourage you to hold on to, and to remind your son, of the beautiful, creative boy that he is. My daughter found great comfort in your son's website, and companions she found there (one of Pow pow's daughters) during her worst struggles with pandas. Your son has helped many others! I am wondering if you have been able to find a doctor to offer your son aggressive medical treatment during this latest episode (pex, ivig, iv steroids, iv antibiotics)? I will pm you a few names (I am thinking you are in the Philly area?)

Is there any possibility the rash is strep?

I haven't read the whole thread, but.... My two pandas girls: immune system tests normal they get sick about once a year they seem to have a normal fever response. They have NO abnormal test results (and we have taken many, many, many vials of blood, testing for everything under the sun) other than Cunningham's test. They are physically healthy, and seem to be able to fight infection well. We have very little autoimmune history, and no rheumatic fever history in family. The strep that triggered pandas (they were cultured positive at time of overnight onset) was relatively symptom free (one day of malaise)- every other time they have had strep, it has been normal fever and sore throat- just that one time that was different...

Peg- no experience. But, you might want to look into this.... I met with a prominent rheumy (adult) last year who was interested to see my kids. He couldn't/wouldn't treat, but sat in on an appt we were having. He said his group is having great success with low-dose cellcept for kids with lupus. He thought that would be an avenue to explore for us (we haven't). I imagine this would have the same effect your doc is looking for.

While we have not gone to therapy steadily - it has REALLY helped. First of all, it really helped ME. It has been so helpful to be able to discuss things with a professional, it has given me tools to work with the kids, and given me the confidence in what I am doing. And, it has really helped my kids overcome some ocd. We saw two therapists we did not like. We saw two therapists we liked. The one that was the most successful for us, was tough. At first, I was unsure, but he was SO knowledgeable, and up front with the kids. He laid it out for them, and really pushed them to work on the ocd. He also helped "normalize" ocd by putting it in the framework of any illness. good luck!

When zithromax eliminated my kid's symptoms it was Rx'd for every day. Even now, though they take twice per week normally, if we see a symptom spike we increase the prescription to daily.

Arial- The ONLY very teeny silver lining to having two with pandas, is that they are not alone, they have a lifelong friend that can really understand, and hopefully look out for each other, even after I am gone. It is a built in support group.

Ugh. I am so sorry. I feel your frustration with finding a therapist, as we have that same issue. We have had lots of ocd issues, and some ideas they have gotten "stuck" on (items they want, things they want to do, looking for a lost item, etc)- but nothing really similar. My best advice would be to use direct, simple, honesty. Reiterate that this behavior is completely unacceptable, and will not be tolerated by you or the school. (If you have already went through the reasoning- I think you can skip over that). Tell him that you are happy to help him in any way he needs to avoid this behavior , but that this will no longer be tolerated. Come up with a plan of consequences and rewards. Consequences may be loss of privileges, time outs, sitting behind the bus driver. Ideally consequences should be short, immediate, and if at all possible related to the behavior. I think maybe if he speaks like this at hockey, he immediately has to leave? If he speaks like this on the bus, he will have to have his seat moved next to the bus driver? I am not sure if these make sense- just throwing out ideas. My daughter is 8, and we use an oriental trading box treasure chest full of prized for rewards. It is cheap junk, but she likes to be recognized as cooperating, and she likes junk. For each bus ride, playdate, hockey practice, etc, that there are no issues like this- he can take a prize. Would this be motivating for your son? (you can come up with other reward systems as well). This can move to other issues in a week or two when this behavior passes. We use this to work on her ocd issues, and she is motivated and happy to do so. I think you are doing a great job by taking this seriously, and sending him the right message. If it is truly ocd, you may need the help of a professional (or the advice of a parent who has been through something similar)- but I think you are doing the smartest thing- ocd or no ocd, there are some things they need to know are just not acceptable. He is 8- but imagine if he was 15. You are doing the right thing by taking a strong stance. I think it would be important for his dad to be on the same page and let your son know. Maybe you could talk to the other dad, or your husband could- to let him know you would prefer if he wouldn't allow his kids to use that kind of language?? Or better yet, if it takes place during practice- the coach should have a word with the kids. I don't deal in sports, so I don't know if you are dealing with a bunch of cave men- but in my "girl" world of horseback riding and ballet, I could easily have a confidential discussion with the teacher- letting them know my child's situation- and enlisting their help. I am not sure the kids sports world is as evolved Good luck- honestly, you sound like you are doing a great job. I think (for yourself) the key is not that the behavior is eliminated immediately (although that would be nice)- but that you are consistent and sending the right message.

I pm'd you. Steroids have been our lifeline. They have allowed both of my pandas girls to live a relatively normal life.

kthoms- I have two daughters with pandas. Both initially remitted from 30 days of zithromax. Further episodes, caused by various illnesses, required immune modulating treatments (steroids, pex, etc). We view the pandas symptoms as an autoimmune reaction to illness. We currently use the appropriate, aggressive antibiotic to treat the illness, but then rely on steroids to halt the autoimmunity.

smarty- Have you tried contacting Dr Susan J Perlmutter in VA? She is a neuropsych- maybe she does the testing, or could refer you. She worked with Swedo.

I certainly agree you cannot, and wouldn't want to force a child to abstain from doing their rituals. I have seen how when the ocd hits my kids are in a sheer panic. But- I do feel it is important to continuously work on the ocd with erp. This does not mean not allowing the rituals. What this would mean is, sometimes when ocd is really strong, starting with teeny tiny baby steps, and rewarding them. For example- try delaying the compulsion (even for 5 seconds), try switching up the compulsion, shortening the compulsion, etc. Something even really small, that with a little pushing, they CAN do, and then rewarding them for it. Or doing teeny tiny exposures to the fear (which would be different than eliminating the compulsions). Drawing pictures, writing stories and watching videos on Youtube can be helpful for this. Even starting by working through the workbook what to do when your brain gets stuck is a start. I don't think it helps anyone not to do any therapy. I think even the TEENIEST bit of erp can give the kids a sense of control, and set the expectations for the point that they are able to work on it. It is a balancing act- for sure.

Ann- I have totally been where you have been- so I will add my two cents, fwiw. When pandas ocd hits in our house, it is overnight and like a mack truck. A child normal one day, is the next day consumed with ocd, and completely panicked. The child begins to "listen" to the ocd, and NOT to us. The child also begins to lash out at us, because their stress level is SO high. We see this, and feel so much compassion for them, that we lower the bar for behavior, do more for them, and try to make their lives easier. Then after a period of this, we wonder how our family life has gotten so out of control, with in many cases, the kids running the show. We sought intense ocd therapy this summer, and ended up working a lot on this issue, mainly an issue of compliance, with the therapist. It was extremely helpful. So- here are my thoughts: Do not ever let them get away with hurtful (physical or emotional) behavior. Do not ever become involved in their ocd rituals. These two things, no matter how hard or how long a tantrum, should be held firm. I personally think it is okay to temporarily lighten their load of stress if the ocd is really bad. I think you can have a frank discussion, and tell them they can skip their chores (or whatever it may be) for a week while they are working on the ocd, but that after that week is up, they will need to return to their responsibilities. We try to use a very consistent behavior management. Basically we sat them down this summer, and said that we no longer will tolerate what has been going on. We would no longer let ocd be an excuse for bad behavior. We expected them to act age appropriately, and discussed every issue we had and what are new requirements would be. And we started all at once. What happens now (we had to use this a lot initially, now, very seldom) is that we use a timeout strategy. For any hitting or physical behavior they immediately get a time out. For most other behavior they have one warning, and then if they don't comply, they get a time out. The time out is 4 minutes in a designated spot. If they refuse a time out, that is fine, but they get nothing (no one speaks to them, no food, no tv, no computer, until they take the time out). If necessary a loss of privileges can accompany the time out, but we found it wasn't needed. Once the time out is over, the crime is "paid for" and everyone moves on. I will say, this has worked FANTASTIC for me. I used it a lot for maybe two weeks, and now the house runs really smoothly (even through a most recent uptick in ocd). The kids HATE the time out, so they do try to avoid it, yet if they do take one, it calms them and diffuses the situation. It is truly not only used for bad behavior but for any compliance issue. In other works if I say: daughter, clean up your desk now, thanks. And she says no- I say, you can either clean your desk up now, or you can have a time out and then clean it up. I will say, it has not worked as well for my husband. He doesn't use it as consistently. He gets angry with them very quickly and yells- instead of using the time out. And things frankly, go haywire. When I can successfully coach him to use it, everyone is happier. I hope this helps a little bit...

Pandas 16- I would suggest that you contact Beth Maloney and Diana Pohlman. They are two pandas parents who are in touch with lots of moms. If anyone would know of some young adults, they would. PM me if you need their contact info. I know this isn't what you are looking for, but I will tell you anyway My older daughter was 8.5 when pandas hit, mildly. Nine months later she had a debilitating onset (constant ocd, agoraphobia- type behavior, refusing to eat, major depression, hiding all day, etc.) Prior to pandas she was a completely "normal" child. In fact (in my eyes) somewhat of a superstar. Socially adept, insightful and outgoing, academically advanced, interested, enthusiastic, fun, etc. Since pandas onset, she is all of the above and more. The more is; wise beyond her years, and compassionate for others. The more is also an autoimmune disorder which flares up occasionally and gives her mainly ocd along with some anxiety, moodiness and panic, that we are learning how to treat aggressively. In between episodes (which may be 2 per year, and last less time as we learn to treat) she is completely normal. During episodes, keeping up with "life" completely is hard, but to all outsiders- she looks and acts completely normal. I do not envision a normal life for her, I envision an exceptional life for her, for that is what mothers envision for their daughters

Petie tk- You will find a few different answers to these questions. I will give you my experience... I have talked to some parents who have pandas kids that are NOT triggered by other illnesses. We have not found this to be the case for us. I have two daughters who were clearly triggered overnight by strep. They get mainly ocd. They both are able to achieve 95 to 100% recovery in between episodes from a combo of immune modulation and therapy. We have enjoyed long times between episodes: 7 mos, 9 mos, 14 mos- you get the idea. BUT both girls have been triggered by non strep illnesses: H1N1, common cold virus, and sometimes even heavy exposure to illness. Thankfully, the do not get sick too often. When this happens, we see either what we call a "bump", a short lived, mild-ish increase in symptoms. We handle this by increasing antibiotics, dosing regularly with advil for 5 days, rest, routine, healthy food, no stress, etc. Sometimes we see a more dramatic episode, which usually happens "overnight" again, with a continued decline. Things end up getting pretty bad, pretty fast. When this happens we use an immune modulation therapy, ie, steroids, to help pull them out of it- like you did. With a great TEAM of doctors, and quick action, my kids have been able to live mostly happy, normal lives since diagnosis. I certainly worry A LOT more....

It is great that this article ran in such a high profile paper like the WSJ. I am sure many families struggling with PANDAS, without knowing what they have, will seek help. I liked that it listed several pandas symptoms, and somewhat painted the pediatricians as crazy for wanting to head to psychotropic meds first, before antibiotics. Tanya Murphy and USF are just a gift to all of us. But, to be honest, I felt a whole bunch of frustration upon reading the article. Not sure why. I guess just wishing that some journalist would actually do a story. Not just skim the surface, and do research that may take and hour or two, but really look at this in depth, so each story is not the same, over and over. I guess that has more to do with the newspaper industry than anything- but I felt like- tell us something new, something insightful. Or, really delve into the symptoms, the presentation. Try really helping SOMEONE. I talked to a local reporter (although chose not to participate in the story for privacy concerns for my kids) and his research was- one psychiatrist, and looking for one family. He had not gotten in touch with the top couple of docs in the state who treat this disorder, he had not talked to any families yet, and he didn't even know Saving Sammy was published (he told me a book about pandas was coming out- I was excited- then he told me the author was from Maine- duh- that book has been out for what? two years?). He had talked to one psych, and told me the story was half done, he just wanted to add one family's story. Really? That research is an embarrassment. He is certainly not qualified to write anything that would be published (although he will). I guess this is why no one actually READS the newspaper much anymore.... I guess the excitement, for me, of seeing pandas in the press has worn off a bit. Yeah, it is great to alert new families to the disorder- but what good is that if they cannot get treatment? I am really not feeling that negative today- but just wanted to get this off my chest

Pat- Doesn't California have a philosophical exemption? I am in NJ, and I have been forced to take a religious exemption from vaccinations, even though our doctor wrote a letter stating that my kids should NOT be vaccinated at the current time. Ggrr. Good luck!

Lauren- I agree with LLM. I have two daughters with pandas, both onset and diagnosis close to two years ago. I won't tell you it has been easy, but thankfully we have had long windows of time relatively symptom free. I do not think there is any "permanent" damage done- but I do think the kids "learn" from pandas, and some therapy is needed for many to make a full recovery. My best advice to a new parent is to find at least one, if not two, doctors EXPERIENCED in treating pandas- and then treat quickly and aggressively. Everything will be ok

Amy- I am just going to throw this out there FWIW- I have 2 girls with pandas. Oldest's initial onset was very mild. She remained mostly functional, if a little moody. She had some ocd she hid. Her major issue, though, were stomach aches. They were on and off all day, and eventually made her not want to go anywhere. She didn't seem to be having unusual symptoms in the GI dept other than the stomach ache complaints. (she did have occasional loose bowel movements). We did GI appts and tried diet, etc- nothing helped. Eventually we realized it was pandas. Pandas gave her some heightened "sensory issues" in her GI system. Her stomach "hurt" when she was hungry, or after she ate, or before and after a bowel movement. In other words, any time there was any "action" down there, she either felt, or read it as pain. OCD wrapped around this and made her stress on it, and not want to go out because of it. This was her initial onset- one month of zithromax and this issue disappeared, and (fingers crossed, thank goodness) it hasn't returned in almost three years. So- of course, rule out anything physical (we did)- but keep in the back of your mind that pandas can cause all sorts of issues....

Glad you are getting help! I have to agree, that Dr T has been a rock for us in the last year- not sure where my kids would have been without him. All docs have their issues, but he has been responsive, in touch, and has taken action when we have needed it!

I do not blame vaccines for my kid's pandas. (They both DID get the flu mist a little less than three months prior to onset....) BUT- for now, we are pretty much done with vaccines. NO flu shots, NO HPV, no boosters in the forseeable future. Could not take the chance. And- when doing the risk vs reward equation for each vaccination, pandas seems to tip the scales to NOT vaccinating. I am angry because the state that I live in requires SO many vaccinations, and has no philosophical exemption. Also, a letter from a doc about an autoimmune condition is not a valid. I had to take a religious exemption- of which I am not- and I prefer not to lie- but I am forced into it. Gosh- pandas has made me somewhat bitter.....

it is very likely from low potassium from prednisone. While on prednisone we increase potassium intake by snacking throughout the day on: oj, oranges, cantaloupe, bananas, and raiisins. I also supplement calcium.