Megs_Mom

"To see him do this is like having your dog walk up to you and start conversing in English." It's so funny - we were walking through the grocery store, and my daughter suddenly realized that she wanted Apple Juice again - after a full year of refusing it. I watch her all the time, like she is a movie come to life. I know everyone else thinks I am nuts - so it's nice to hear other people here talking about it. I can't stop marveling at little things. Here is an email I got from my husband the other day while I was out of town: "Megan's pill fell out of her mouth while getting in the car this morning. I was going inside to get another. She picked up the pill from the driveway and swallowed it. She slept 8:45 to 7:10 without interruption." We are so amazed by everything normal!

You are talking about ERP therapy (exposure & Ritual Prevention). It is proven to work better than medication on compulsions. You could read Tamar Chansy or Aureen Pinto Wagners books about Childhood OCD - they are very helpful in finding effective ways to stop compulsions, using behavorial therapy.

I was afraid of that. We are going back in next week, so I'm sure he'll tell us then. I'll be sure to get an extension on our prescription!!! Let me know what you think of NorthEast - maybe we will move as well, although I may go see Dr Lee and start the process with him as well. We are in a good place right now, so I hate to have to go explore - but maybe that is the time to do it!

I thought this was overall a decent article (given the state of research & education). Clearly they missed the preventative and possibly immune-modulating role of anti-biotics. At least they mention IVIG & PEX. I was very interested that Tamar Chansky posted - I love her book, it was very helpful to us in understanding what is happening in an OCD brain (whatever the cause). Here is her post: March 09,2009, 9:05PM Thank you for this excellent article. I am a child psychologist specializing in the treatment of OCD, and see many families with PANDAS each month, so I am grateful that you are providing parents and others with very accurate information about this phenomenon. If I can add two other thoughts: first, sometimes children have no symptoms of strep, but have a sudden explosion in OCD and/or tics. So if your child has behavioral changes, but doesn't seem sick, bring him/her to the pediatrician to get tested. Second, Cognitive-behavior therapy can work together with the antibiotic to help kids not get stuck further with their symptoms. The interested reader may want to look at my book: Freeing Your Child from OCD: A Powerful, Practical Program for Parents of Children and Adolescents. Thanks again for getting the word out about what can be a most confusing and distressing phenomenon for parents. Tamar Chansky, Ph.D. www.freeingyourchild.com --Tamar Chansky

edit: Oh wow, bronxmom, I hear that all day too "mom, ....mom......mom!". I'm always telling him to stop calling me. For us, this turned out to be OCD - the yelling "mom" was a compulsion - there were a few reasons for this, but once she learned the language to communicate OCD, she can better explain why. Often it is just because the thought "my mom has left me" has popped into her head with great urgency. So even if she can see me, she may still have a moment of panic. Yelling mom, and my answering is the compulsion that calms the urgency. I also would tell her to stop calling me (or stalking me from room to room). However, that did not work. Calming the anxiety for a time did not keep it from coming back again, sooner & sooner. When we did ERP therapy, even before any anti-biotic, we were able to calm this behavior. The antibiotic really got the thought to go WAY down - then the ERP was even better able to work. But before that, we could calm it down enough that she did not spend much of the day panicing that I was leaving her, screaming mom, and following me around the house. She could play alone, take a bath alone, play with a friend, etc.

Hi Lisa - You are in the Charlotte NC area? Who is the Neuro that is moving? Dr. Nelson at Presby Pediatric Neurology has been extremely helpful to us, and does treat PANDAS with both antibiotics, and IVIG if needed. We were refered to him by Lakeside Family Physicians. Also, Dr. James Lee, Neuropsychiatrist has very high recommendations from a number of moms. Dr OConner, immunology, is new to PANDAS, but is very interested. I have not heard of treatment recommendations from her yet, but she may be worth calling as well. There are also doctors in the Raleigh area, so while it is a hassle, it is not desperate here in NC. I have not started exploring Peds yet in terms of consulting with Latimer, but I feel good about finding this if needed. Some moms have already recommended Peds in Charlotte for this. You could also have your Neuro that is going to Nebraska consult back to a local doctor. Good luck on your calls!

I would call Dr. K (or email) at www.webpediatrics.com. He has at least some experience with possibly PANDAS teens, and may be able to help. Symptoms include stomach ache. On another front, do you think he has OCD? Have you tried ERP therapy? This can be a hard disease to understand, but it does get progressively worse, and has so many faces.

Madeleine W. Cunningham, Ph.D. George Lynn Cross Research Professor Microbiology and Immunology Director, Immunology Training Program University of Oklahoma Health Sciences Center Biomedical Research Center Room 217 975 NE 10th Street Oklahoma City, OK 73104 Tel 405-271-3128 Lab 405-271-2133 X47455 FAX 405-271-2177 email: madeleine-cunningham@ouhsc.edu

Hi Mommd - we are still waiting on immuno testing, but will be done by end of October. We have same immuno as you. Meg is doing so well, however, that I am really doing this as a data set for the future. I don't think we'll act on any results unless she gets ill again, and then it may change what we allow for her medically. We postphoned the Immuno/Neuro appt at Emory until after the results come back in, so that we can get a second opinion before we do anything else. I'll be sure to share results here. Everyone is also pressing us for flu shots & I have no idea what we are going to do on that front. Given her contamination fears during an episode, we are all concerned that the flu may set her back significantly, but on the flip side, we are concerned about the H1N1 vaccine as well. Bit of a quandry. At this point, it is not available here, so we have a few more weeks to make the decision. I will be thinking of you and your other son tonight -and pray that all goes well. They are both lucky to have you as their mom. Best -

Dr. Daniel Geller at Massachusetts General Hospital (617) 726-2936 and Dr. Tanya Murphy at the University of Southern Florida (727) 767-8230 have just launched an Augmentin-based PANDAS study. Perhaps you may want your child to participate, or you might know of another child who could benefit. Beth To join as a fan of Beth - http://www.facebook.com/pages/Beth-Alison-...f=ts&v=wall

Hi Worrieddad - I am just overjoyed to read your post. Between you and Pixiesmom, those are the 2 cases on this forum that concerned me the most - and to ready of the early hope you are seeing - it gives me great hope for the future. All my best to you and your family - and thanks so much for sharing.

I am so grateful that you shared this update - and think of you all every day. So hopeful that this will continue.

That is so great - congrats on the OT mtg w/ the school. I found "The out of Sync Child Has Fun" to be a great book to help us set up some home activities. I will say that the starter book "The Out of Sych Child" and "The Sensational Child" (sp?) were more helpful to me in terms of helping me understand what was actually happening, and to what level. They are usually pretty easy to get through the library. The "has Fun" version does not explain quite as much to help you categorize your child's challenges. Oh, and we also did well with one of the blow up seat with the textured top - kind of like sitting on a ball - really helps her sit still longer. Also, another mom has recommended the Weighted Vest - that was also very helpful to us.

It's funny how much I can forget in 17 months. As I read back through my notes last night, (hindsight being what it is!) I would say that 40% of the initial issues were sensory - as if PANDAS somehow made all sensory challenges one hundred times more intense. The other 60% was OCD, but it was as if we could not see the OCD at first for all the sensory issues that were covering it up. You have all reminded me, that for a long time I felt as if I needed to teach her to interpret her body again - she could not get into a warm bath (too hot), take a shower (hot, pain), hear a loud bell or alarm, tolerate bright light, etc. She could not even seem to interpret simple messages from her body - anything that was different became "I am going to throw-up". It was like I had to teach her what a feeling of needing to use the bathroom, eat, being full - what those feelings really meant. Once she learned all this again, then we were able to identify "real" pains or discomfort, and were then able to diagnose an actual stomach issue - peptic ulcers. Even the tone of voice from a friend would be dramatically misinterpreted. To this day, when she says "such and such yelled at me today", I still ask her "a real yell or a Megan yell"? Then we can talk about the situation. I remember getting so frustrated that she would cry if I was even a little annoyed with her - I felt very manipulated, like I could not get mad at all anymore without triggering a panic attack. I had to adopt a really calm voice all the time (with some serious running time in the morning to burn off my frustration!) OT really helped with all of this, as did ERP therapy for the OCD. When she was diagnosed with panic disorder, I was sure that SPD was causing much of the panic. I do think it is all interrelated. It's such a strange disease - I likened it to a stroke victim at one point - except she could walk fine, she just had to relearn how to interpret signals to her brain - she was hypersensitive to everything. This also reminds me how important it is to take care of yourself, and to find ways to release all that frustration outside of the interactions with a PANDAS child. My worst times in memory are when I got really mad at Meg, for things that she could not help without a lot of eductation and therapy - and antibiotics. My most proud times are when I was able to remain calm when all around me was in crisis mode. Eating, getting out my frustration, having someone to talk to - those were my outlets. I'm sure my friends are bored stiff, but thank God they did listen some, as I did not have this forum at the time.

Some great posts here! I agree fully with exploring any possible issues, including immunology, for your child. We are - it's just blood test (and trust me, that is a HUGE deal still around here, so I don't say that mildly). And I am a huge believer in using the word "remission". Remaining realistic about the potential for a return of the disease, like any autoimmune disease, is important. But for us, we now feel that we have a support team that will make the next one not so life altering. We all know the pattern, and we have many things to try. Having a plan of attack really helps. We are in 98% remission for about 60 days now, and hoping to post here at a year! But if not, we'll post what we do next time, and how it works. We have so much hope! I wish you all the same.

Hi Manda - Ok, I am not an OT, and I would definitely suggest that you need one. Much of the below sounds like SPD. Here are some suggestions: * Go online and buy "The Out of Sync Child" and/or "The Sensational Child" (sp). They are quick reads and explain all of the Sensory issues - both on the over and under reactive sides (and you can have both) and suggest techniques to help. * Call your local autism society (no, I am not saying she has autism - but most children with Autism also have SPD, so the society is your best tool to find a good OT for SPD). Ask for references * Now, I am guessing that the next trick is to get her there - is that right? Ok, so first of all, make the OT appt. Then post about what happens when you try to get her out of the house. I am betting you are dealing with some sensory issues there, and more likely a lot of OCD. So we'll make a plan for that when you tell us more. But get the evaluation appt - sometimes they are weeks out. * As part of a sensory/OCD "daily plan", we ensure that our dd gets out of the home every single day. And then ideally, is away from me (safe person) for a period of time as well. If it is Agoraphobia, this is critically important. So tell us what is keeping her home. In terms of immediate suggestions for the sensory issues you have listed, You need to make a plan to communicate & test some things with her when she is calm. So get ready for this by making some plans. First of all, you need to explain the concept of HABITUATION. There are lots of ways to communicate this to a child - I send one plan to you via email. Basically Habituation means that if you let your body get used to something, it adapts. If you keep shutting out the sensation before you get used to it, you have to keep adapting over and over. So the example most people use it a cold pool. There are two strategies: jump in, or ease in slowly, right? We all know that the fastest way is to jump in. That kid yells for a second "cold, cold" and then says "hey, it's not so bad!" He has habituated. The other child slowly eases in - and when they hit their belly, it is the worst! And if they run out into the sunshine for 5 minutes, they have to start all over - they can't just go right back up to their belly. You may need to illustrate this concept to her physically. A good way to do this is to have a bowl of cold water & a bowl of really warm (not burning!) water. Feel the warm water first - see how fine this is? Do the cold water first, just stick your hand in for a sec till it is good & cold. Now, try to put your hand into the very warm water. It feels like it is burning! Tell her this is the way it will feel ahead of time. Encourage her to leave her hand in the water until it feels just warm again. That is Habituation! We use this word constantly, always looking for ways to "habituate" to a situation. We even call OT "Meg's Habituation therapy" so that she really understands the word. You want to teach this word in a fun and non-intimidation way. You cannot force someone to habituate - they have to choose it, ,and the first step to choosing something is understanding it. Ok, so then the next thing is "squashing". It sounds like she is already seeking that, with the upsidedown couch mashing thing (it is so wierd, once you learn the language - often their bodies are already telling them (and us) what they really need). Teach her about this when she is calm! This is not something you want to force - you want to help her learn to choose this. Explain that when someone starts to feel frustrated, it can help to play the squashy game. Show her a safe place, like the sofa and the bed (you want a few locations, as you need to get to this very quickly - put it in an easily accessable place). Have her lie on the sofa with her head to the side. Then pile pillows on top of her (you can try ways to make this fun too - do you gently lie these on her? Or does she like the feeling of a pillow fight when you do this?) and then lay slowly on top of the pillows and her. Make sure she is ok at all times, this is a very gentle process, and she should be able to get out at any time that she wants. Use light pressure and ask her if you can squash her more. If she says yes, give her more of your body weight or lightly bounce your body on her. You will quickly learn what pressure works. Now you need to catch "frustration" VERY early in the process. You can't get her to do this when raging (at first). So when you see her starting to get really frustrated over a small thing - then ask her to play squashy. We were amazed by this - she would go in really cranky & come out giggling. We also found that being upside down really really helped. You can acheive this by doing supported headstands on a bed if you can't hold her upside down. Again, practice ahead of time, and see if she likes this. You can hold her legs up, or use a mat & a wall to help. Meg can now do a headstand that you would not believe! Ok, I have to run & wake up Meg , so I'll try to answer more later. Tell us about what happens when you try to leave the house & I'll start sending ideas about that too. Good luck! Have fun practicing squashing!

I am exploring the Immunology route for Meg as well as Rheumatology. I have a horrid suspicion of Lupus, which I hope I go to my deathbed someday, wrong about! We try hard to balance exploring what is happening to her, with having a normal life. It's a balance, and I try every day, not to be a "nutty PANDAS mom", which is really my now natural state . I think there may be more than one answer to the question "why are our children vulnerable to PANDAS?" Why one kid, and not the next? Why do antibiotics and ERP therapy so far give us a 98% remission? Why does another child need IVIG, and another PEX? Why is Pixie still struggling? A number of factors may play in here - heredity, underlying immuno challenges, environment, different strains, dumb luck.... The hard thing to me, is that there is not enough research going on in the medical community. So it's up to us - parents as scientists! We will never be fully objective - and that is not our job. It is our job to love and to have faith in our children. Somehow, we have become their case managers as well. But hopefully, by sharing ideas, by disagreeing calmly (which you are all doing a great job of on this site - politicians could learn from you all!), perhaps someday, one of our ideas will motivate a scientist to listen & explore. So keep talking, keep your opinions strong, and keep exploring. I wish you all the very best!

Many tics can be actually OCD compulsion. Sounds like he has a good bit of OCD listed below (hat compulsion - you can tell, as he is anxious if interrupted), seperation anxiety, and hoarding (which is also OCD). All of this responds well to ERP (exposure & ritutal prevention), and you may find out that some of the tics will respond as well. You may want to be a detective yourself, and start keeping track of anything, that if interrupted, causes anxiety. Very likely, you are interrupting a compulsion. If you read "What to do when your brain gets stuck" with him, he can also be a detective. Good luck!

We have let Meg pick out her own clothes for years! That is one battle I just don't care about. What you want to distinguish is the difference between sensory issues and OCD issues around clothing. They can both be real, and are treated slightly differently. If you feel that you have a sensory issue, I have an email for that topic that I'd be happy to forward to you - it's the sensory plan that worked really well for our daughter, so that she can wear the clothes that she WANTS to wear. PM me if you want it & I'll email it to you.

Darn it all, I just lost a post! I hate the internet at our house. Anyway, Meg's first episode was at 3.5. We thought PANDAS/OCD - no one agreed or would treat, we did ERP & anti-biotic for ear infection. Age 6.8, again, sudden onset - diagnosed with Anxiety, Panic Disorder & Agoraphobia - no one would treat (too young). So we did "home-made ERP" which is also good for Panic - and it worked ok, but I know now, that I was missing a lot of little stuff. Then back again at age 7.5 - this time, clearly OCD and Panic. After flying through some therapists, took her to Pediatric OCD specialist at Duke, who is awesome. She taught us the most about how to recognize OCD and fight back. Also some awesome books - basically, we read everything, reviewed all the research literature we could find, went to OC Conference to learn more, listened to parents on OCParenting. We immersed ourselves in the world of OCD for a while. Then we met a researcher at Yale, and he finally said "Look again at PANDAS", and another mom that post here some also really helped us understand PANDAS more. Once started on anti-biotics, her mind calmed again and ERP became even easier. Now at age 8, Meg understands her mind from an OCD perspective, and can mostly help herself if needed. As a family, we are better able to talk to and help her. We don't accidentally dismiss or mock irrational fears. We know how to ask questions and how to interpret some behavior. She is not punished for OCD behavior. It's like we learned a new language, and it helps us all cope. Meg knows that this may come back (but not yet why) - and she feels that she is ready for it. She loves being Meg, and understands that sometimes it will take some courage and work to get to do what she wants to do. But she has not had a panic attack in months - even before the anti-biotics. It's not so overwhelming for her, the scary irrational thoughts. Honestly, she is my hero - both her dad and I are amazed at what she can do at only 8 years old, at her personal courage. We often worried that we were needing her to do too much - but in fact, all that work is what is allowing her to be a child again, and for us to have joy back in our house. Reading books really helped me - here are some suggestions: Adults: What to do when your Child has OCD: Strategies and Solutions - by Aureen Pinto Wagner Talking Back to OCD: The Program that Helps Kids and Teens say NO WAY - and Parents Say Way to Go - by John March Freeing Your Child from OCD: Powerful Practical Program for Parents - by Tamar Chansky Brain Lock by Jeffrey M. Schwartz Kids: What to do When Your Brain Gets Stuck - a Kids Guide to OCD - by Dawn Huebner Blink, Blink, Clop Clop,. Why I do Things I just Can't Stop by Katia Moritz Up and Down the Worry Hill - by Aureen Pinto Wagner I also have a blog (long & boring!) about the challenges along the way, if you are interested. Or if you want some of our example files about OT or about OCD therapy, just PM me your email address. In some strange way, perhaps her PANDAS was made worse by the misdiagnosis over the years. Or maybe it helped us know how to fight the OCD component of it. I am not sure, but it is the path that we were on, and at this point, we are grateful for the place that we find ourselves in now. While we dread the next onset, if it comes, (and yes, we are on permanent low-dose Azith) we are fairly confident that we at least have some tools to deal with the psychological component of it. I even wonder, if she had some very very mild OCD tendencies to start with, and this is why the OCD is so intense when PANDAS comes? But when I found myself with a 3 year old that seemed to have OCD, depression and Anorexia - all in the space of a week - I knew that we had to take dramatic measures on all fronts. I still fear the teen years, and hope this is really gone by then. But on the flip side, hopefully, we are giving her all the tools to handle whatever comes her way.

HI Faith - here is my best guess about the list you gave: Sensory:FREAKS out and cries and whines like a little girl with knots in her hair (he's a boy) when I try to brush it for him. Answer - you need to try OT for this, and get to the point where he can do it himself. I don't touch Meg's hair unless she asks. Most likely OCD, given what you have said: transitioning from shorts to long pants and vice versa, .... ALWAYS wears socks to bed, only wears t-shirts and hoodie jackets, FREAKS out and cries and whines like a little girl with knots in her hair (he's a boy) when I try to brush it for him. sharpens pencils constantly, ALWAYS removes the place mat on the kitchen table when he sits down to eat because it bothers him (have no idea why). The one ocd I am sure of was a repetitive erasing thing he had in school that flaired last year and the year before. it had to be perfect (and it was to begin with) or he would erase it multiple times and/or go over the letter. it got so bad, he would whine and moan while he was doing it because he couldn't stop, and he eventually told me "something in his head was telling him to do it". at that point I discussed with the teacher and he was allowed to write in pen. eventually it got better, but he still corrected his work with the pen. no question he is very ocd, because everything for him takes twice to three times the amount of time it takes other kids, so I truly don't know what's going on here. but I'm working on it. (PERFECTIONISM is a form of OCD - the obsession is that something "bad" or wrong will happen if they are not perfect - compulsion is doing it over and over. DOUBTING is another form of obsession in OCD, this can also cause compulsions that slow kids down a LOT. This responds very well to ERP therapy) OCD: he doens't seem to like the sound of ME, my singing, my saying cutesy remarks, even a word he never heard before. he gets irritated and shows it! he basically has a mini meltdown over it, not joking, sometimes I do it on purpose to get a rise out of him and he comes at me, but we are both laughing. (It is great to have a sense of humor about this. There is a show called "Obesssion" on A&E - the old shows are on-line. There is one, where a woman has obsessions about hands and fork noises - they just "feel wrong" like fingernails on a chalk board. Her mom in particular drives her "mad" and she does ERP for this. It works). The thing about OCD, is that it is irrational. It means that part of the brain is not working correctly. So you don't have to find the logic in it - you or your child. You just have to do the ERP therapy to get over it.

OCD is sometimes hard to explain, only in that there are about 7 common areas of obsessions, and as many compulsions that result as a mind can create. So I'd really have to understand your child's situation to give the examples that would make the most sense to your situation. However, with that consideration - here is our situation. Meg had primary obsessions in the "contamination & safety" column and in the "scrupulosity" column of OCD. Her related compulsions took up nearly the entire day. Most of these were in her mind, but some were physical. Some of the things that I originally had in the sensory column were as follows: Sensory Issue: Megan has become very sensitive to taste & is rejecting many of her favorite foods. She says that they taste wrong. Actual issue: once we understood OCD, she was able to tell me that her OCD was making her think something bad (mostly throwing up) would happen if she tried to eat certain things. So to fight back against the OCD, we would take baby steps to try the food, break up the ritual of AVOIDANCE. Avoidance is one of the most common OCD rituals, and is in some ways, the hardest to spot. (For Meg, it was Agoraphobia - wanting to stay at home and with a safe person). Since OCD feeds on ritual, the more we stayed at home, the harder it was reinforced that she would not go out. Now, with slow patient therapy, Meg has added back all of her food options. Once we added the antibiotic, the difference was that she would be able to buy & taste & like the new food all in one day (or maybe two). Before the antibiotic, she could still add back the food, but it might take a week of work and rewards. So the OCD seemed to become just habit based. Sensory Issue: Megan often freaks out in a crowded classsroom, and will not let other children touch her. Acual issue: Meg is so scared of germs, that she cannot touch another child, even her best friends. She does not know how to explain this. Children cannot touch her paper, her pencil, her body. She cannot play games that involve physically touching anyone. At OT, she will fight with another child to get to play a game EXACTLY the way her OCD wants her to play. She is often evaluated as being unable to get along with other kids - but actually it is her fear of germs. After ERP therapy, she works very hard on this, as she loves being social SO much. sensory issue: Megan hides behind notebooks while testing. She seems overwhelmed by the noise of the classroom. Actual issue: Meg is convinced that she will cheat. She is building walls around her so that can cannot see anyone's paper & therefore worry about cheating. Sensory issue: Meg freaks out if I am in the least angry and feels that I am yelling at her. She seems to hear all voices as much louder than they are. Actual issue: Meg's OCD tells her that if she does anything wrong, that her mom (me ) will leave her. This is an irrational fear, but as a result, her tolerance for getting into trouble is at zero. It sends her into a complete panic. Sensory issue: Meg cannot wear some clothes. Actual issue: This one was two parts - she always had some mild sensory issues about clothes, from birth. But we dealt with those through habituation techniques. But some clothing issues continued to create panic. It was because OCD told her some outfits would make her sick, literally. Either because she wore them around someone that was sick or she was sick when she wore them - or they could have been touched by someone in a store - you see this loop is endless! Again, ERP therapy and a lot of courage on her part - much easier when treated medically, but still there. Sensory issue: light really bothers Megan. This was true, and went away with anti-biotics. This was also true for really loud noises. Ok, this is just a few. I'll pull up notes and post more later. Feel free to ask questions about this.

We did OT for a year, and it helped our daughter keep up with many areas during a PANDAS episode. At the beginnning, we thought she might have SID. But recently, we reviewed her status to see if she still qualifies for the next year. Nearly everything that the OT group (who is awesome) and I, thought were sensory - were nearly all now clearly OCD. We just had to learn so much about OCD before we understood how it manifested. Really, only the sensitivity to light and sound were primarily sensory issues, and those fade away when a PANDAS episode is treated. We will not stop OT - we are now going to once a month, so that they can reserve a spot for us in case we have another episode. But in the end, our remission was gained through anti-biotics and very intense ERP and Habit Elimination Therapy.

I agree with this. I love that so many men are involved! My husband is awesome & I am so appreciative of his patience and support during this time. But it was not intuitive for him - quite the opposite. And this was not his "thing", so if I wrote a story, it would largely be about dd8's struggle w/PANDAS & OCD - and mine with doctors and research. Honestly, he would want to be mentioned as few times as possible!!!

Hi Manda - I am so very sorry for what you are going through. I hope things improve. I'm sure you have considered if there might be a co-morbid diagnosis in addition to PANDAS - but I know how hard that is for anyone to figure out. A decision for hospitalization must be the most difficult crossroads in a parent's life. At a recent conference, I was able to meet a number of people who had severe OCD (not PANDAS) who were hospitalized, and greatly helped by that. It was good to hear the perspective of those that have been there. I have heard very good things about Ramuda Ranch. Whatever you decide, you have my empathy and support. It is clear how much you love your child. Do whatever you need to do to keep her safe. If you think she may harm herself or anyone else in the house - then that maybe the time to seek help, even if for a short term period. Hope to hear more positive news soon.