dcmom

I agree with everything Meg's mom has said. She has helped me through many tough times. ERP has helped us tremendously. We are very open with our kids about pandas, and how it needs to be addressed, and a MAJOR component of that is ERP. It doesn't sound like you are in this position at this point, but I will add, that while addressing eating issues with ERP, and medical intervention for pandas, we also made some attempts to increase our kids caloric intake (which at one time got very low for each kid, due to eating issues). My daughter got to the point where she was eating about 25% of her normal diet. We did this by always having bite size, healthy, tasty snacks out on the table. I tried to make the very appealing meals. When things were really bad, we did dinner in front of the tv (my kids would eat a little more, keep at it a little longer if distracted). I would make a tray up of a lot of variety of small bite foods, not asking them what they wanted, just making it up. (lots of healthy chicken fingers, bite size sandwiches, crackers and cheese, apples and PB, mini muffins, fruit, veggies and dip, etc. We also did daily smoothies made from Kefir, ice, fruit, mango sorbet, and some protein powder. Once my daughter got "healthy", her food issues disappeared and have never come back. I agree with Meg's mom that food issues are probably the scariest things we have dealt with. It sounds like it is something somewhat minor for your daughter now, so you are doing the right thing by "jumping" on this with ERP.

Arial- That was wonderful- thank you. It is amazing how we think we are so alone, yet there is a whole board of "strangers" who understand EVERYTHING we feel.

nmama- I totally agree...does HIPPA not cover "conversion disorder"?

Milk? Really? If I have a doc that asks us that, I am running for the hills! Has she read ANYTHING lately?

It is Dr Storch (loooove him). A blurb is on Pandasnetwork. Org but I really want the whole thing.... I didn't look carefully, but if no one has a copy, and it's available for purchase- I think I will buy it.

I would LOVE a copy of this article if anyone has I will send you my email thanks! Eileen

What is he trying to make political statements with his diagnosis? AND what happened to HIPPA? Is it okay to disclose that these girls all have mass hysteria? What a joke! Dr T cannot get there fast enough....

chase- I am so glad your daughter is getting relief! Yes to your thoughts. My dd's both have pandas. Both had almost total symptom relief after 30 days of zithromax. My first diagnosed came off zith after a month and went on twice weekly, relapsed within a month due to T&A, and we then put her on daily zith for about 2.5 years. Her sister was diagnosed after this, and had total symptom relief after 30 days, and due to our scary experience with sister, stayed on full strength zith for two years. Later episodes were not helped or avoided by zithromax. Both girls eventually even contracted strep throat while on zith (plus augmentin). Both have normal immune function, and fight off illness well, recover fast. They have only had strep twice in the last three years (and they are cultured at ANY sign of fatigue, ocd, stomach ache, illness, etc). This summer, in frustration of them getting sick on two abx, I started questioning everything we did. I have come to accept that it is NOT possible to keep someone from getting sick. It is probably NOT a healthy idea to try. So I took them off of EVERYTHING. They did great! I will admit, I have them on zith twice weekly now, since school started- because I am a chicken, I guess I want to hedge my bets a little- but my "grand" plan is to get off of abx. I am VERY afraid of unintended consequences. I have gotten older and somewhat more cautious in the last three years. In a perfect world, I would suggest staying on full strength antibiotics for two months. Then, I would slowly wean her off of the antibiotics. If I saw any symptoms increase, I might give it a few days to ride it out. If symptoms spike uncomfortably, or for more than a few days- I might abort the weaning, and try again after another 30 days. Some kids seem to be "antibiotic dependent"- I don't think that was ever the case for mine- and some others- so hopefully you will be lucky. At that point you can decide with your doc whether to keep her on prophylaxis. I think the KEY to pandas is not to prevent illness (because that is not realistic or healthy), but to be ready to immediately react to the pandas itself. Our new protocol is: treating any illness, if they get strep treating with a course of clindamycin, if we see any symptoms flare go to 5 days of full strength zith plus regular advil dosing. If this doesn't take care of it, we move quickly to a steroid burst. The last one we did for my 40-45lb daughter was 40 mg/day X 3 days, 20 mg/day X 2 days. So far so good. We do keep up probiotics and vitamin D (500mg/day) for both no matter what. Disclaimer I try not to bother with lots of bloodwork anymore- but my kids have been tested for EVERYTHING. Most of it comes back normal. If I had any concerns of illness, I would be less inclined to do the steroids as easily. As it has gone, both have seemed to need steroids twice during the school year. For them to have a normal life, I can live with that, especially if that means being off of long term antibiotics. The important thing is having a doc at the ready to write the Rx as soon as you need it.

I will agree that steroids have been miraculous for two of my kids, multiple times each. 10mg is VERY low. We recently did a short burst for my (about) 45 lb daughter of: 40 mg/ day X 3 days, then 20 mg/ day X 2 days. She was in the start of a downward spiral due to a recent cold. The first two days made her VERY edgy, which on top of increasing OCD is tough. By the fifth day she was back to herself 100% and has remained there for about a month. We are seeing a possible slip now, but not sure yet (using advil, other factors could be contributing), so far it is VERY mild. I agree with pow pow- I totally wonder about the responses to meds. My kids do not seem to benefit from antibiotics more than for treating an illness, yet their response to immune modulating therapy (pex, oral and IV steroids) have really been immediate and 100%.

Your ped sounds great- but, Peg, it is you who continues to fight for your daughter, and continues to be such a supportive and wonderful contribution to this forum! I am in awe of your steadfast patience and determination!

Hi Steph- My daughters both have pandas. We have had excellent results with IV solumedral. We have done it twice in both girls with tremendous results. We have never done IVIG, but have done plasma pheresis. We really haven't had negative side effects from the solumedral, and it has resulted every time in an immediate turn around, and then an accelerated path to healing. Please feel free to ask any questions. IMHO steroids are underused as a treatment for pandas. We have been able to really maintain a totally normal life for my kids, and really shut down episodes at their start, with steroids.

Jv83- It may be helpful if you share your daughter's story. Was she strep triggered? triggered by another illness? what type of testing have you done? how long has she had pandas? In our experience, with my two pandas daughters, antibiotics have not been the magic bullet. Initially, both remitted symptoms with about 30 days of full strength zithromax. But, after that, they would relapse due to another trigger (illness, strep exposure, loose teeth, T&A surgery, etc). At that point, antibiotics really did nothing- we had to move to some type of immune modulating (or dampening) type of treatment. For us this usually means some type of steroids. After three years of dealing with pandas in two previously healthy and "normal" kids, we have found that we don't need to go "above and beyond" a normal protocol for treating illness (ie strep throat), or even in searching for a trigger (though sometimes we still do bloodwork with a flare up of symptoms- and find nothing)-- we find that we need to quickly and aggressively administer inflammation control. If you have done appropriate testing for different bacteria/ illness: strep, mycoplasma pneumonia, etc and for immune system deficiencies- I would discuss with your doc the possibility of trying a steroid burst. In the meantime, you could try regular dosing with advil (as you would for fever) for 3 to 5 days to see if there is improvement. Most of us on the forum also give probiotics to help keep the gut healthy while on antibiotics. Also a GREAT psych experienced with ERP (exposure and response therapy) for OCD is like gold, if you can find one....

JAG- I have had lots of "selfish" thoughts over the years. The latest one being, in this past year Dr T has been amazingly helpful for my kids. What happens if/when he cracks this Leroy thing? Will I ever get in to see him again? And yes, if general medicine/insurance/NIH get this accepted into the mainstream med community and media- what will they say works? I don't really think my kids have needed long term abx, though we did do them, but we DO need periodic immune modulating therapy (steroids, iv steroids, pex). Sigh- I do feel it will be a long road even if PANS/ PANDAS becomes more mainstream..... BUT- the more generous side of me is very hopeful that these kids get well, and that Dr T finds overwhelming success and support! (Ya know- it is MY job to be a mama bear to my kids).

philamom- I agree with llm. Maybe you are substituting one ocd for another right now, but the goal in to get closer to functioning. You are in such a hard place- very hard to get out of without major professional help from someone really good with erp. You should move towards- No most likely you will not throw up today, but I cannot guarantee it because someday in your life, you will throw up- BUT when you do, you WILL be able to handle it. And then refuse to engage in the conversation any further or again. BUT- it is baby steps. I am just a mom, I have very little erp experience, just some time with a GREAT psych working with my kids. It is a frame of mind, an I am going to be completely honest and open with this kid, and work on getting them to live in a very age appropriate manner, a step at a time. But sometimes it is hard to get from here to there in a direct line. Having had a kid with some agoraphobia tendencies with pandas- I say CELEBRATE. Having her out in the world is a huge step, an exposure, and maybe she will naturally start to be able to expose herself to her fears. Most of erp is somewhat intuitive, common sense- BUT when you are in the situation it is VERY hard to see clearly (I am much better at giving advice than giving myself the same advice sometimes). I find, when my kids are getting to a "healthier" place, they start doing some of their own erp; "well I CANT possibly go to school, but I will try to go to the store, and see how it is..." etc. Now the trick is- you NEED to get her out of the house, to a public place, EVERY SINGLE DAY until this is a distant memory. This is great news, and a great start, and I think you should rejoice with her!

Hi Airial- I don't have a lot of time this afternoon, but wanted to chime in. I will review my post and add more (if needed) tonight. I feel like only this summer did I start to get a tiny tiny bit of understanding of ocd. I feel like I am at the beginning of my learning/understanding, and that is mostly from spending 30 hours with someone who is extremely gifted in working with our kids, this summer. So- I will try to channel my inner Dr R (this is what I tell my kids). First-I think your daughter is younger, so you may have to rework my thoughts a little for her age. Our dr would say that our kids really know inside what reality is. Your daughter on some level knows her fear is not "normal"- yet her brain is stuck. SO- while it is important to address the fear with some conversation, this should only be done once, she is smart, she will hear you and get it. Addressing the fear with correct info, will do nothing for her ocd. So you should talk to her about fires- Yes houses catch fire. NO it doesn't happen that often, but I cannot promise you it won't. But what I can promise you is that Daddy and I have a plan that we have taught you, and if our house did catch fire, we all (including you) will handle it. Apparently, some of the fear in ocd is not the fear of the thing, but the fear of "handling" it. Of course you couldn't promise her there won't be a fire, but you can promise her she will be able to handle whatever would happen. I think you need to dig in with her and find out the fear. There may be more to it- the house will burn down- where will I live? I will lose my toys? My mom will die? I am thinking there is kind of a second part to this fear, that might be key to working on it. Then I think you need to tell her, the fact that she thinks of this over and over is something called ocd (have you discussed that with her?). That yes, everyone is afraid of things, but they let it go. That you will no longer answer her questions with a discussion about fires, because you just had one. In the future, if she asks, you probably need to say something like, we already had this discussion- remember what I told you - I am no longer answering these questions because it will not help your ocd. Then you need to work on exposures- these will need to be tailored to the second part of the fear (if you can find that out) - but I will run down a list of thoughts to the house on fire: say "our house is on fire" look at a photo of a house on fire watch a video of a house on fire ask her to draw a picture of your house on fire have your daughter write a story about your house being on fire re read the story she wrote to several people- dad, grandma, etc (either have her read it, or you read with her there) spend a little time every day with her visualizing your house on fire- be detailed - what would start it, where would burn, it would be hot and scary, mommy would grab you and go to the neighbors, lots of stuff would be ruined, the whole family would have to live in a hotel for a while, etc THis is the best I can do for now. My kids are 8 and 11- this is how "my inner Dr R" would handle it. If it is not hard, and she is not somewhat resistant- it is not the right exposure and will not work. At the same time, you need to start with the easiest and move to the hardest. I would discuss with her the list of things she will have to do, and have her put them in order from easy to hard. Then I would do one every other day, practicing them a few times every day. It is not easy. The biggest thing I learned from our therapist is that he was very blunt and up front. He didn't hide anything from them- anything he could discuss with me, they would be in on. So IMHO it is important that our kids know they have pandas and ocd, we like ocd to diabetes- it sucks, for sure, but lots of kids have "stuff" to deal with (divorced parents, poverty, illness, learning issues). We "normalize" it in this way. The treatment for OCD is ERP. It is not optional, just like insulin would not be optional for a diabetic child. (we were lucky in that one of my daughter's bf's is diabetic and cannot eat anything and takes multiple shots daily- my dd would rather have the ocd). My disclaimer is that my daughters (well at least one) responded way better to this with a therapist than she would have to me- so I think it might be important to find a great ERP therapist (although for us we had to travel from NJ to FL for that...) Good luck- feel free to pm me if I can help in any way.

This is for two pandas girls: 1. Both took daily zithromax for two years. Both never seemed antibiotic- dependent as far as keeping pandas away. When they got strep on zith and augmentin (at same time)- I totally changed my frame of mind. The were off ALL meds in the summer, and now both take zith twice per week, however I do plan to take them off completely this spring. 2. Both take the same, zith 500mg/ 2x per week. 3. One weighs 45 lbs age 8, the other 82 lbs age 11. 4. I would say they have had 3 severe-ish pandas episodes- they were diagnosed 3 years ago. 5. At this point their status is excellent. I would say they are 95% plus. The youngest seems to have started a slip last week, but am hoping to head it off with steroids if needed. Things have been relatively stable since August for both.

okay, one more thing. I know you are frustrated. But, Dr T is a sole practitioner, and one of a handful of docs that treat pandas. I have been in his office quite a bit and seen him in action. I can tell you he REALLY cares about his patients and is constantly busy. His practice is new-ish and he doesn't have a "staff". Sometimes there can be a wait to speak to him, and I understand you are panicked and frustrated. But- I know he prioritizes kids in terms of who REALLY needs something immediately. There are some cases of pandas that actually become somewhat life threatening, and need immediate and aggressive treatment. I have personally seen him completely focused on getting a very sick kid help. So, just know, for all the times it takes you longer than you would like to get to him, that if (god forbid) the day ever comes when you are in a complete emergency situation- he will be there. He has really been a rock for us this year- I don't know where my kids would be without him. All of the docs that treat pandas have some "issues" that you must deal with as patients- but the alternative is other docs who have the "issue" on not actually TREATING pandas. You are in the beginning of this road. This is the hardest part. You haven't learned how to help your kids most effectively, or learned to see their patterns. This will come over time. You will develop a plan with Dr T, and life will get easier, more predictable, and you will very very very very slowly start to feel that everything is going to be ok. I promise.

The suggested antibiotic for "carrier status" is usually a course of clindamycin. If you explain the situation, and show the tests, to your husband's doc- I would think he would just oblige and prescribe one course of clinda. Both of my kids contracted strep throat while on daily zithromax (plus another antibiotic). Our regular pediatrician, willingly, prescribed clindamycin for both kids, which immediately cleared infection.

TMom- Dr Storch and Dr Murphy are also interested in this antibiotic combined with CBT for OCD. This is a preliminary study- I don't have a link now, and I think they MAY have an ongoing study. Storch, E.A., Murphy, T.K., Goodman, W.K., Geffken, G.R., Lewin, A.B., Henin, A., Micco, J.A., Sprich, S., Wilhelm S., Bengtson, M., Geller, D.A. (in press) A Preliminary Study of D-Cycloserine Augmentation of Cognitive-Behavioral Therapy in Pediatric Obsessive-Compulsive Disorder. Biological Psychiatry

LaurenK- In our experience, once strep triggered PANDAS, flare ups can be caused by many illnesses: H1N1, common cold virus, strep, even loose teeth, and I have heard a prominent pandas researcher say stress. For us, the strep caused the initial episode and got the ball rolling. Doctors have been coming around to the fact that other viruses/bacteria may cause PANDAS-like illness, or that the triggering strep infection may be missed and the trigger never found.

Thanks LLM- gave me chills, and hurt. How long is the stigma against kids/ people with mental illness going to last? As WE are learning, most of it has a biological cause- but, frankly even if it didn't- why is one person's life worth more than another? Hopefully this will change in our kids lifetime. Oh and BTW- as I am sure you all know, parents teach this to their kids. My dd has a special needs child on her bus. I imagine, by what she tells me, that he is high functioning autistic- but I don't know. The kids are cruel to him. They set him up to ask a girl out, they tease him, etc. Only she and one other girl (her friend) stand up for him (they went to a guidance counselor). When I asked my dd what he was like- her response was- I don't know, maybe kind of like I was when I was sick.

Philamom- So sorry about what you are dealing with! I will give you my dd's story- take from it what helps.... DD had a sudden onset of pandas (we didn't know at the time, took us about 6 mos to figure out). A lot of her fears over the last three years have centered on getting sick/ vomiting. Initially, she complained daily of stomach aches. Her stomach "hurt" when she was hungry, when she was eating, after she ate, when she needed to have a bowel movement, etc. We eventually (after lots of gi work, and an "aha" moment) realized that her stomach "hurting" was actually more of a sensory issue. Just like her sister became "sensitive" to clothing, she was sensitive to ANY motion in her digestive system. It is a chicken and egg question, but OCD wrapped tightly around this sensory stuff. She headed toward becoming agoraphobic. My once "always want to go out" kid did anything to stay home. She was afraid her stomach would hurt, or she might vomit, out. Things eventually got better on their own. Then she got sick the next year and the sh on toast hit the fan, so to speak. She had panic attacks every night. She would barely eat and would not leave the house. She spent much time in the bathroom, because the ocd told her she wouldn't vomit if she was in there. Things went from bad to worse, and we had pex. The next year, she had a milder onset of pandas. We treated medically immediately, and most stuff resolved. She had one issue of fear of vomiting. Her fear went a little further- she was afraid she would vomit, people would see, and she would be embarrased. Initially, this was EVERYWHERE. However, things did calm down as we went places. But- it stuck at school. So much so that she basically missed half of the year last year. We worked with the school and a therapist. She had homebound instruction and at the same time we were slowly forcing her back to school, one period at a time. It was horrible. She would "white-knuckle" it through her time at school- panicked the entire time. This summer we went to USF for three weeks of therapy. Our therapist was AMAZING. I cannot say enough about him. Basically, we were not doing the right thing for Caroline by just pushing her back to school one step at a time. We were kind of doing the response prevention with out the exposure maybe. At Florida- she was EXPOSED to her fear, starting smaller and moving up. Everyday was uncomfortable (if it isn't uncomfortable, its not going to work)- yet not too much to bear. Our daughter was a little different, because in addition to the vomiting fear, there was the fear of embarrassment. After we did all of these things- she was fine. SHe went back to school with next to no anxiety, and within a week or two it was like she had never had the ocd. Amazing. Here is what we did/ learned in FL: She is afraid of throwing up and being embarrassed. Well, we cannot say for sure that won't happen. But what we do know for sure is that if it happens she will be able to handle it. People throw up in public, it is not fun, it is embarrassing, but they deal with it and move on. OCD is an illness, like (lets say) cancer or diabetes. It sucks to have it, no question. But, thankfully there is treatment that we know works. Treatment is not optional. If she (dd) had cancer- she would not question the cancer doc and we would not let her decide if she gets chemo. We needed to start looking at ocd this way. Her exposures, in this order (remember if they are easy, they are not the right ones, all of these were met initially with resistance from daughter). Say the word throw up. Say the word throw up to strangers. Write the word throw up. Look at photos of vomit. Look at photos of people vomiting. Look at videos of people vomiting. (Yes there are some great resources on the internet- youtube, vomit girl on you tube, and our favorite- ratemyvomit.com.) She writes a scenario of her vomiting in school. She writes a scenario of her vomiting in school and reads it to a stranger. She tells a stranger about a time she vomited at school, and they ask questions. Make fake vomit. Take a photo of herself with fake vomit on her shirt and hang it on her mirror. The culmitnation was making fake vomit and putting it on the floor of the kitchen in the hospital, and asking the receptionists to come see and clean up her vomit. I am not sure if these are the correct exposures for your daughter, but they will give you some ideas. Our FL therapist was very blunt and honest with our daughter- which was refreshing and inspiring. We have not before, nor since, been able to find a therapist knowledgeable, experienced, tough and matter of fact enough for us. I learned SO much. But, I will say that my daughter still needs a therapist to bring her through these exposures and not me. For us, it complicates things and creates arguments. When we have the doc laying out what needs to be done, I can follow through with her and she is cooperative. I think because she is smart and her age- she does not always take our word for things- but she much less questions a professional. Of course the therapist is not emotionally involved also. Our therapist was VERY matter of fact, this is no big deal, and I have seen kids with WAY worse issues than you.... I wish I could be of more help. I assume you are in Philly. Did I hear Drexel had a program? Personally, my advice would be not to fool around with an unproven psych. Get in contact with Dr Eric Storch at University of South Florida- I think he knows someone at Drexel. We spent six months fooling around with local inadequate psychs, when three weeks in FL did the job.

What do you mean "how can I apply ERP without the vomit?" Does she vomit if you attempt ERP? I was under the impression she doesn't vomit too frequently? To be honest- my daughter really needed someone other than me to do the ERP. She is 11, and very smart, and has lost the thought that I know everything- she really wants to deal with a "professional". It has been very hard for us to find someone who REALLY understands ocd. We have to travel to FL for that

Philamom- So sorry. My daughter had extreme fear of vomiting in public (particularly school) last year. We tried everything- local therapists, patience, tough love. Ugh- nothing worked. We finally got her to a therapist extremely experienced with ocd, and after three weeks of daily appts, her fear was gone. In retrospect, we were not doing the right things to help her. I wish we had gotten her to this therapist sooner. The KEY for us was Exposure therapy. It was not easy, but it was easy enough, and it worked. BTW- you are not alone, I had one prominent therapist tell me fear of vomiting is the most common theme in her office (her and several partners). We had done GI evals the year prior- the only physical issue for her was the pandas/ocd. Not sure if this is your case... is she vomiting frequently?

I am so sorry you are not getting the results with IVIG. I have two daughters with pandas, and can tell you what has worked so far for us. We have not done IVIG. Both girls had sudden onset of ocd plus other symptoms that correlated with strep infection. Initially, their symptoms remitted with 30 days of zithromax- but that was not long lived. Both had subsequent triggers for pandas (exposure, other illnesses, loose teeth, looking at them the wrong way...). I am kidding there, but that first year it seemed like they reacted to everything. They both had pex with great results, but not a cure. We took a short, unproductive, detour into lyme. They are both now (fingers crossed) the BEST they have been since pandas onset. They are both basically back to themselves- with maybe some minor residual stuff. Our current treatment protocol is to treat this as an autoimmune disorder (novel idea?). When we see ANY indication of an increase in pandas symptoms (our first indicator is certain types of moodiness, usually) we do 5 days of daily zithromax, 5 days of regular advil dosing, and for precaution a throat culture. If this does not take care of things we move immediately to steroids (either IV or a short burst). So far this year, this has handled everything for us. Last year both girls had a bad flare up, that we couldn't treat immediately- so we ended up doing high dose IV steroids- which worked great, and are what started us on this path. I know you will get a lot of responses about lyme treatment- and I in no way am discouraging you from looking at that. I just wanted to share what has worked for us.