SpenceOhana

So DD's pupils have stayed dilated over the weekend. Been giving her Ibuprofen all weekend. Anxious about this. How long did most of you notice the dilated pupils? Would they subside after taking ibuprofen, antibiotics or both?

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! Thanks for your response! Her psychiatrist suggested I make another appointment tomorrow for her to come in for a session. She mentioned something about cpt psychotherapy, is this like ERP? Actually a lot of what you explained seems to be the tools and techniques being taught in the 2 books my daughter is reading that her psychiatrist suggest, "What to do when you worry too much" and "What to do when your brain gets stuck". Tonight we were just reading about the 3 tricks OCD does and how you can't give into their tricks. She's recognizing her thoughts and compulsions now, but still a bit fearful to say "no" to the OCD. Her 2 major thoughts/compulsions are germs & fear of contamination, therefore wanting to wash her hands. We've been able to get her to not give into washing her hands but she still has trouble getting rid of the thought - keep telling her to put it in her "worry box". The other one is fear of praying wrong or not being truthful to God, therefore she wants to pray over and over again. It's kept her up the past 2 nights. This one is going to be tougher because the compulsion isn't so much a physical action she keeps doing over and over again, but a mental ritual/action. We haven't finished the books yet and learned all the tools and techniques. So I'm eager to see how it goes once we use them all and implement them.

Newbie here too. Our daughter was diagnosed with PANS last month. She had negative strep but suffered from a sinus/respitory infection before sudden onset of OCD behaviors and compulsions. Our pediatric psychiatrist diagnosed her. Pediatrician isn't familiar with PANDAS but believes it happens as she has another patient diagnosed with it. She treating DD9 with zith because she did have a lingering cold. Her OCD subsided on day 2-3. But 5 days after treatment they returned. So I asked to do another round of zith, ped was reluctant but prescribed it. Once again her symptoms subsided day 2-3 on it. But here we are again, 5 days after the OCD returned. Psychiatrist is having us treat with Ibuprofen over the weekend until she gets in touch with more peds and psychiatrist that treat PANDAS, hearing from them what longer term antibiotic treatments they do. She's worried about DD developing a superbug to the zith. She strongly feels their is a lingering inflammation. Because each time we treated with zith we also gave ibuprofen. So testing only ibuprofen. Tonight is day 2 on it, symptoms seem a little better but definitely still present. We're also using behavioral techniques to help too. I noticed in your post you mentioned ERP? What does that stand for? I'm still new to all the abbreviations. Also I am going to ask her psychiatrist tomorrow about anatabloc (another mom on here mentioned it) it's a natural supplement anti-inflammatory. She said it helped so much more than Motrin for her DS.

Did you buy it through GNC? Or can you get it elsewhere?

I'm sorry I'm still new here and not hip with abreviations yet, what does cbt stand for?

That Anatabloc sounds interesting. I see it's sold at GNC. How did you know how much dosage to give?

And to treat his inflammation, did you just use ibuprofen? For how long?

Scheduled with a PANDAS neurologist in May. :/ Yes for now her psychiatrist suspects PANS, since strep was negative. DD9 had a respitory/sinus infection before this all started. Psychiatrist is waiting to hear back from other peds and psych who treat PANDAS patients, she called them on Friday but she has not heard back yet. Spoke with her this morning, she said for now give her ibuprofen in the morning and evening. She doesn't want to push her ped for another round of antibiotics and have her develop a superbug. Hoping the ibuprofen helps with any systematic inflamation. She also wants DD9 to come in for a counseling session, teaching us more cognitive and behavioral techniques. She said sometimes cpt psychotherapy can help remit symptoms. Did any of you do this?

Oh and I forgot to say psychiatrist was pleased to hear her symptoms subsided with antibiotics. She was going to call 3 other peds and another psychiatrist who treat PANDAS and talk with them about longer courses of antibiotics. So I am thankful she is willing to research into this. She said she is treating one other patient with PANS/PANDAS but he isn't responding well to antibiotics.

My topic title came from a comment left on one of my previous threads. So DD9 has been on two rounds of zith (5 days on 5 days off). After the first round, 5 days out her symptoms returned. Tomorrow we are 5 days out from second round and we are noticing her symptoms returning again . Hyper active talking, fear of being truthful, crying a few times (once over wanting to read, another over worrying about God being upset with her), germ/contamination phobia, incessant praying...and dilated pupils again. We noticed dilated pupils right before we started each round of zith. So I am assuming this is another flare? Why do the pupils dilate, what causes that? Good thing is psychiatrist called to check in today. She said she understands why our ped is concerned about prescribing longer term antibiotics....but DD9 obviously needs it. With each round her symptoms would significantly subside by day 2-3. So can the psychiatrist herself prescribe antibiotics? Or does that have to come in from our ped? Also think I will request more bloodwork (strep negative bloodwork normal last time). As I was typing this DD9 got out of bed emotionally upset saying she can't sleep because for the last hour she has felt the need to keep praying over and over again.

Yikes, this makes me worry. Especially since DD9 is allergic to penicillin. What other antibiotics do PANS/PANDAS kids take?

Thank you everyone for your input. Waiting to hear back from her ped today. I hope she gets on board and presribes zith for at least a few more weeks. I think I will ask her to try it in pill form, my DD9 will probably prefer that once she learns to swallow it.

Do the pills have a bad taste? I'm wondering if my daughter would prefer these, she really dislikes have to take the liquid every evening.

Thanks! I have been keeping a daily journal log of her behaviors. Dropping that off at the ped tomorrow to try to get her on board to do a longer prescription of zith.

Thanks for the info. You mentioned "tabs", right now they are giving my daughter liquid form of zith...for older children can they get it in other forms?

1) yes symptoms may return after 30 days 2) where do you live?--depends more on the individual doc. My dd's main PANDAS doc is her psychiatrist. However, other top PANDAS docs are immunologists, neurologists, rheumatologists, integretative docs, even peds... But, be careful of neurologists in general, many of them are big PANDAS naysayers. PS...I now see you are in Texas. Lots of PANDAS folk in Texas see Dr. Rao. Here's a link: http://www.latitudes.org/forums/index.php?showtopic=18094 You can also google "Dr. Rao PANDAS" Also, contact the support groups in Texas, they may have more info on docs http://pandasnetwork.org/resources-new-research/support-groups/ So when your children's symptoms would return after the 30 dose, how much longer would you continue antibiotics? We live in the Austin, TX area. We have an appointment with a neurologist group at Dell's in May. They scheduled us with one that see's PANDAS patients. So hopefully that's good?

Hello my DD9 is on her 2nd round of 5-day zith. She was just recently diagnosed with PANS or PANDAS (no strep detected, but she had respitory/sinus infection before onset). Anyhow, during the first round her OCD symptoms subsided, then returned 5 days later after first round. Ped agreed to prescribe another round. Going to talk with her tomorrow about doing at least 30 days or 3-6 weeks of antibiotics. But I did read on the PANDAS network site the following, "In some children, doctors have noticed the generic Azithromycin by name of “Greenstone” is not working well. SANDOZ and TEVA are doctor preferred.". I just realized that the Pharmacy has given us this Greenstone brand. What are all of your experiences with this? And are the other brands really expensive? Also I've given our daughter Ibuprofen along with her antibiotics. How long have you given your children Ibuprofen for you? Is it bad to give long term? Lastly when we started both rounds of antibiotics and Ibuprofen I noticed our DD9 pupils were dilated. It would only stay like this for 1 night. Is this just a PANDAS symptom?

Thanks for the reply. I am messaging our ped tomorrow to see if she'll get on board with our pediatric psychiatrist and give our daughter a few more weeks of zith. She is on her second 5-day round of zith, and again we're seeing her OCD symptoms subside. I'm so afriad they will return this weekend if we don't continue zith for longer. Praying the ped gets on board with this. Her pediatric psychiatrist said to have her call her if there is an issue. So hopefully there won't be. When your children take it for 30 days, do their symptoms ever return after the 30 days? Also a lot of you are mentioning getting a PANDAS specialist? By specialist do you mean a neurologist? psychiatrist? or other type of doctor?

I am definitely interested. We live in Kyle. I just sent you a PM about info for that doctor in San Antonio.

Saidie10 I just PM you.

Thank you. Where do I find out more information about this trial?

She is still on antibiotics. She was originally put on azithromycin(three cycles of five days on, five days off)and we saw a small, but noticeable change. The change was most noticeable BECUASE when she cycled into the days off, we would see she was getting worse. When we connected with Dr. T, he added augmentin to the mix so she was taking a dose of azith in the morning and a small dose of augmentin at night. The change was much more noticeable after that change. several weeks later when we started seeing Dr. Latimer, she dropped the azithromycin from my daughter's protocol and increased the augmentin significantly (2x per day with each dose double what she had been getting daily before) and within a couple of days we saw MAJOR improvement. After about three weeks, we felt like she was significantly improved (maybe 75%), but then she got sick with a virus and started regressing. A few weeks after that, we did IVIG and that's where we saw the real improvement. The doctor kept her on full dose of augmentin and plans to keep her on that dose at least through the end of the school year at which point (at best) we'll wean her down to a preventive dose. I think the plan is to keep her on some level of a maintenance dose until she's a teeanger (she's 7.5 now). Right now, we're just taking it step by step.... What is augmentin? A type of antibiotic? Also did Dr. T charge for phone consult?

Hayley, did your DD's symptoms return when she finished antibiotics? Thanks for letting me know about Dr. ,T may have to put in a call to him.

We live in the Austin TX area. Our pediatrician said she has one patient diagnosed with PANDAS, and he see's a specialist in San Antonio for further treatment. That specialist's first available appt for new patients isn't until July. There is another pediatrician in San Antonio that specializes in PANDAS, left him a message but never got a call back. I will try again. I think our current pediatrician is willing to help our daughter, she just admitted she was not very familiar with PANDAS. Reading up on Lyme disease. Do you and your daughter recall being bit by a tick? Did she get a rash? Now that I think about it my daughter did have a small round rash on her wrist. This was present on day 1 of antibiotics. I kept an eye on it thinking maybe it was a rash in reaction to the antibiotics. We put some topical cream on it, and it eventually went away.

Hello. Our daughter was just recently diagnosed with PANS or PANDAS by a pediatric psychiatrist because she came back negative on strep test and AOS titer was below 200, but she suffered from a respitory/sinus infection a few weeks before her sudden OCD symptoms occured. I've actually blogged about our story here: www.pansawareness.blogspot.com. So 5 days after taking her antibiotics Azithromycin some of her OCD symptoms came back. Is this normal? I read that sometimes it can take 4-6 weeks to recover because the autoimmune process may be well in place. Her germ/contamination phobia came back as well as her incessant praying. I contacted her pediatrician and asked to do another round of antibiotics since the psychiatrist said a second dose may be needed. She agreed but said if it happens again, I'll have to bring her in. For those of you that treated for 4-6 weeks, how did you get your pediatrician to agree with? The pediatric psychiatrist did say, that if we run into a problem to have the pediatrician call her. Also our son has had a lingering sinus infection. Should I have him tested for strep too? How many of your children had PANDAS when someone close to them was the carrier?