Megs_Mom

I am googling NOW!!! Thanks for both tips today!

We are NC as well (Charlotte area - lots of us around here!) - so far, we have done very well with Z-pac. I would not hesitate to use Augmentin if needed, but since she has a co-morbid ulcer condition, we have been very comfortable with the way that Z-pac doesn't seem to be adding to the problem. We have not found a probiotic that she'll take yet (can't take pills yet and is very sensitive to tastes). PMom - we head to the NE each year for the holidays, so I will keep that in mind if she catches anything up there, God forbid.

That is wierd. I never mention this because I did not know how to describe it. Meg has this a day or two before each of 2 major onsets. I'm not sure about the original one when she was little. It looked kind of like the really early signs of whiteheads, but she was only 6 and 7 - and they faded in a day or two without becoming anything. It was like a rash, but skincolored. It was just odd to me because she usually has perfect kid skin. I mentioned it a few times to docs and the did not even blink or comment, so I dropped asking about it.

I am so happy for you all. You are one of the families that I think most of us follow closely, in the hopes that Pixie - and her parents - will find relief and joy. I suspect that this is still a difficult time for you. In many ways, I find that I am best in the time of crisis - it is the phases of slow improvement that are much more challenging for me as a parent, both in terms of identifing the areas of "personality" vs "behavorial learning" vs "illness" - and in term of my own patience with a chronic disease. I hope you are both finding ways to celebrate the amazing job you have done of advocating and healing your child. And I know that Pixie will continue to improve - clearly you and Manda will not have it any other way! All my best - and thank you for the update.

Call during the day until you get Andrea.

This was the biggest thing we learned - was that underneath all the anger and fear, was that Meg was still there - still wanting to do well, and to have fun. But paralyzed by fear. So we had to learn to talk about it, and to discuss why we were asking her to do things that we knew she wanted to do. It was a tightrope. It was the hardest thing to have other people watch, as it looked like I was forcing her to do things she did not want to do. We just had to hold that picture of her in our heart, and we were nearly always right, and Meg was pretty much always glad that she succeeded. It's funny - just recently, I am learning some things I missed - that she refused and said that "she did not like" - but really they were just fear based during an episode, and then they became "things Meg does not like". Mostly foods, so far - apple juice, smores, and now cotton candy. I need a street fair! She is ready to try cotton candy!!! All of the sudden she is telling me things that she thinks she might like to try again. I wonder how many kids miss out on things because we see their fear as a real dislike, instead of seeing the child hi-jacked underneath? I feel very fortunate in some really wierd way that our onset was sudden and severe. So we could see very clearly the before and after of Meg. But if the onset were gradual, many things would have become gray - that for us were black & white. Even with the sudden and extreme onset - over the 15-18 months that this went on, we still lost some of the details around the edges. As an example, Meg quit ballet. She had good reasons and went to another activity so I had to respect her. And she did not quit mid-season - she saw it through. But to this day, I do wonder if much of her deciding to give this up was due to the stress of "holding her hands a certain way" that just ultimately took all the joy out of this activity (OCD did not like these hand positions, and she was constantly trying to find different ways to hold them or having to do mental compulsions to reverse them). We compromised by agreeing to consider ballet again next year (just take a break, not "quit") and to do a summer camp for a week next summer. That way, at least she'll have another chance to "make up her own mind", now that she can do as she wishes with her hands. Whatever she decides will be fine by me - so long as she is deciding!!!

How did he do this am? I have my fingers crossed for you both, whatever your decision. I'm sorry to be late in replying - little internet access last week - but I'll post anyway. We tend towards the firm side. I think that may partially be because despite suspecting PANDAS from the start, we were unable to get her diagnosed for a long time, so we existed in the "OCD world". This was long before Dr. L came on the scene. While I will now ALWAYS treat her medically, we did learn a lot during the process about what we can really expect in the worst of times. While I say we are firm, we also try to be realistic and very loving. So during times of extreme Seperation Anxiety, we set a policy of telling Meg that she would have to attend school, camp, babysitter, time with dad - some activity everyday. However, in reality, we dialed it back a LOT. We would pull her out for lunch, and keep her for a long time, take her to other activities and stay with her, start the day really late, etc - but we never expressed it as an accomodation to anxiety. So she would feel like life was going on as normal, but in reality, we were asking very little from her. We called it "bravery work". And in her "real" life, she loved all activities. So we held onto that image of Meg, and assumed that the "new Meg" was not real, and that underneath it all, she still wanted her life. We just had to fight for it. We also visited with every person that would be with her - ahead of time - and explained seperation anxiety and OCD, and how we needed immediate help when we arrived, with a quick calm seperation, and that they needed to immediately give her something to do. In Meg's case, she likes to "help", so we had them give her a helpful task, like counting taking attendence, handing out papers - whatever, to keep her moving immediately into another activity instead of just curling up in a corner and crying. This was often very difficult, but if they could keep her moving, she would normally keep going. I spend a lot of time crying in my car while waiting to see if she would make it. It was not easy. We had great "team members" in teachers and counselors and other moms, and they would text or call me once the storm passed. It was usually ok in 20 minutes and then she would actually enjoy her time there and be glad she went. Then we would reinforce that and role play it afterwards. Eventually, while still hard, she could gather her courage to go into activities more independently. I don't think we could have done this without an amazing community of support around us, that did not flinch when she seperated from me while screaming, and put their whole hearts into helping her. If she was sitting in the corner crying all day, there is no way I could have kept sending her. She ended up having fun almost every time - or enough fun to satisfy me that we were doing the right thing. I found that giving others very specific tools to help her was the best thing - just a little info about her illness & then a tool to help. Some days, I felt like every single activity was deliberate - like every second of the day was designed around therapy for her. If we sensed that a caregiver was not supportive - then we bailed on that activity & found another alternative without involving Meg until the plan was done. We had no time or energy for anyone that was not on our team. I became "one of those moms" . Meg had sudden onset of panic attacks, agoraphobia, sep anxiety, sensory issues and severe OCD. We spent evenings mapping out the next day's plan - what she would do, how much we would expect from her, what would be the next baby step forward, what was too much, what was the reward. And then when she awoke, that was it - the plan was the plan, and we put our full confidence into it. If it took 2 hours to get out of the house, so be it, we were not quitting. However, there was very little beyond "fun" that was expected of her during that time. No cleaning, no homework, no independent play - I could have cared less what or when she ate, so long as she did get food - I did not care about a clean room, or about tantrums - or handwriting - or chores. That was all off the table. We cooked, cleaned & catered to her physical needs without really letting her know that we were doing it - usually in anticipation of the need. And we had a fun reward for every accomplishment. One hard thing - like going to school - might earn her a night to sleep with me. So we'd avoid a known trigger (sleeping alone) as a reward for courage, instead of as a reward for anxiety. I can't tell you how many times I was ready to quit on something - and then she would finally do it and her face would light up & she would be so proud of herself. We learned a way to talk to each other, so that she could tell me if "Meg wanted to do something" and "if OCD was just telling her not to do it". That way, she could acknowledge how badly she wanted to go to the birthday party (or whatever) but how hard it was. So we were always "fighting OCD (or anxiety)" not fighting with Meg. We always tried to be a team, if that makes sense. If we had not done this strategy, she would have been completely homebound for 3-5 months - so in some ways, perhaps her severity required a stricter approach. I can't speak to that - for us, if we gave OCD an inch, it took a mile. We had to hold the floodgates closed, if that makes sense. I really pray that if there is a next time, that antibiotics, Pred, IVIG if necessary - will allow us to be more flexible and not quite so desperate to hold onto her life. In a mild phase, then we are flexible, but still have some basic requirements around school and also homework - and around self care. I agree with Mati's Mom - confidence in our decision was key for us - both my husband & I had to be on the same page. Also, whatever the decision to bail from something, to not make it about anxiety, but to give it a different name, so it can't become manipulative. I am left with a lot of PTSD from this time frame - I am still amazed when she gets out of the car in the morning & walks into school. I am amazed when she feels the fabric wallpaper in a hotel without freaking out about germs, for heavens sake! I hold my breath every time a child around her sneezes, or if Meg looks at her food the wrong way. But Meg's memory of the worst time this summer, is not as bad as mine. She remembers more about courage than about panic and fear. I think maybe it's like giving birth - you kind of forget how bad it was after it is over. Well... she forgets. I can't.

That is a great question. I have sent emails to the webmaster at NIMH, have contacted various perceived owners of content, all without success. I tried calling one day and just gave up. If you find a way in, I'd sure be willing to provide a marked up copy of the NIMH website with corrections based on the current research. Buster Here's a list of communications people at NIMH Volkov, Marina L Acting Director, Office of Science Policy, Planning and Communications email mv31o@nih.gov Buckley, Diane Deputy Director, OSPPC email buckleyd@mail.nih.gov Little, A. Roger PHD Sr. Policy Advisor for Sci. Coord. email alittle@mail.nih.gov Stevenson, Maggie Program Coordinator NSC email mdahl@mail.nih.gov Egan, Katharine D Chief, Science Writing, Press and Dissemination Branch email ke66j@nih.gov I don't know if any of them would be the correct people, but if they all got enough emails, sent and sent again every few weeks, it might get the attention of the proper people. Squeaky wheels and all that. I really think that PANDAS does not get any funding because NIMH feels that no one cares. Everyone assumes that it's a rare disease. But there are 1.5-3 million kids with OCD. If only 1% of them have PANDAS, that's 150,000 kids. Toss is Tourettes, GAD and ADHD kids and it's pretty easy to make an argument that there's a difference between rare and rarely diagnosed. Buster - do you have a particular message you've composed in your head that you'd like us to convey? Some references to recent studies, some key points that need to be addressed? It would be more effective if we all communicate roughly the same ideas. Love your ideas Laura. Maybe you could ask us to all send an email to a different 2-3 people every week or two? So that we'd stay organized? Look forward to hearing Buster's thoughts on what to include. Do you want the first email to be our child's story? And then future emails to be topic/plea based? Look forward to hearing more.

I have printed this & am using for my book of info for doctors. While we are in the US, to have this recognized & recommended in Canada by a review board is really good info. I think to show that they have really considered there, and that it is not recommended for general autism, but is recommended for PANDAS (and therefore for a child with both) is very cool. A little odd, given the issues folks in Canada seem to have with getting IVIG.... Thanks, peglem.

We saw improvement with Steriods, but so far only did the burst for 5 days. It only helped for the time frame that she was on it - but I do understand that it has helped other children longer term. We would do the steriod in a heartbeat if she ever got really bad again. I'd do almost anything at that point. However, my question is why your neuropath suspects Lyme? That is not a casual diagnosis, and if he really suspects this, he should immediately be referring you to one of the experts in Lyme so they can do testing. Most Labs have a REALLY high rate of false negatives. You don't want to do steroids if he has Lyme. Did you tell Latimer about this suspicion? If not, then call her & explain this & see what she'd recommend doing next - maybe she will send you to a Lyme expert. I would not hesitate for one second about the antibiotics. I waffled on this for a while (I was a little earthy about antibiotic abuse) and am very sorry that I let her suffer for one day longer than necessary. Meg's OCD was pretty dramatic, but we had so many PANDAS naysayers around us that it was hard to make the call. I will never suffer from that insecurity again - she gets antibiotics for as long as she needs them. We continue to see improvement - lately, I have been noticing that almost all of her sensory issues are gone. I think she had these since she had her first incident at 3 - but SID remained. I just thought that was how she was, and got her tools to deal with it. But with antibiotics, this seems to be resolving as well. She wore a hooded sweatshirt for the first time - I think ever - yesterday! A lot of kids get antibiotics for acne... our pharmacist reminded me of this & it rocked me - why are we treating skin and not brains!

Hi all - I have a friend whose 2.5 yr old is having sudden unexplained high fevers. They are every 2 weeks. I feel like it is likely strep related, but thought I'd post the details and see what you all think. There are no behavorial changes - just the fever (during which he just lies in bed & doesn't eat). My thought is that she needs to check the IgG subclasses & treat the child with a few months of antibiotics (she says he is better after antibiotics & will be fine for a longer time afterwards). If anyone knows any studies that would be helpful too. Here is her email that she said I can post: Yes, I went back and checked and the blood work done in September included the “Quantitative Immuglobins”. I do not have a copy of the results….i started requesting copies in October after another 6 vials were taken at the ID specialist’s appt. And during that round, they also did testing in several categories including IgD/Serum, Hematology Miscellaneous, Immunology, etc…. an entire page of items. It was from this round of blood work they said he was not showing enough “robust” responses to the pneumococcal vaccine. They also said his platelets were slightly elevated, however, he started another fever episode the very next day and they later said his platelets “could have been elevated because a fever was coming on…” We are supposed to go for another CBC w/diff and another test during the next fever episode (within the first day of it). I know our situations are different, but for what it’s worth here is a quick rundown of what we’ve gone through with Connor. If you have seen/heard of anything (or spoken to anyone with similar situation) like this in your research, I am all ears. Thank you again—SO much. When Connor was 5 months old he had bronchiolitis/walking pneumonia. Since then he has had battled respiratory issues and was treated as asthmatic last year…first on Singulair (which gave him in nightmares, so we stopped) and then with daily breathing treatments for approx. 6 months. He has improved tremendously and now only needs breathing treatments as needed if he has a nasty chest cold/cough. He is one that’s always been sick….You name it, he’s most likely had it! Roseola, strep, countless ear infections (tubes put in), countless “nonspecific viruses”, pink eye (several times), stomach flu (couple of times), eczema/itchy skin, etc….. He has tested positive for strep 3 times (and they’ve done countless cultures). And he is only 2 and ½ years old. The weirdest strep episode came when he was broken out in hives, all over and itching like crazy. No throat symptoms or fever. The “fever episodes” really kicked in within the last few months. On average, they occur about every 3 weeks. During each episode, his has a high fever, complains about his throat and has no appetite. During the past year, he’s had blood work done five times. And to reinforce that there is something more going on than “just getting sick a lot and/or daycare”, our daughter (10 months old, in the same daycare) is never sick (with the exception of the swine flu, which we are still in shock over Connor NOT getting). As of now, the front runners for his condition (based on dr.’s thoughts….) are PFAPA or cyclic neutropenia.

That's it exactly - this sense that we got "lucky" to find answers, but that so many other children are suffering in the privacy of their homes. That without the internet, we would never have known. This sense of obligation to ensure that others have the opportunity to help their children, regardless of socio-economic barriers - or resistent doctors.

When our daughter was really ill, we used to take pictures of her eyes, trying to get a picture of what was happening. We have a electronic frame in our kitchen & I can tell you if she was ill or not at a glance. Even when smiling, her eyes are wrong. It makes me sad to see them - but I agree, they are there for a reason. I can't forget what we have gone through for many reasons, not the least of which is to stay prepared for the future. Everyday, I know I bore my husband by raving about common place things that just feel like miracles to me. Saturday, Megan helped me sort and organize her books. Sunday, she organized her clothing drawers when I asked her to, without help. I have never been able to have her clean any part of her room before without a lot of supervision and upset. Then we shopped for clothes with no drama. I find her reading in her room sometimes. In so many ways, I just find her to be a different person now. My husband said to me last night "I am so glad you are getting to just be a normal mom for once". It made me cry. I do find such joy in small things. Maybe having reminders of that time will help me keep that simple joy in our lives. I wonder what each of us will now contribute to the understanding of this disease, in small and large ways. There is an odd sense of "calling" in the recovery mode, that I hope we can hold onto.

Thanks all - I called and asked for something like the medicines you suggested - they ended up prescribing Atarax, which I just picked up. We go again today at 3, so cross your fingers out there! I am a little nervous about how much to give - it says 1-2 teaspoons. This will be our first try, and I don't want her to be knocked out, just to take the edge off, so I am thinking I'll start with 1 tsp. We have been using the Emla cream, but while the anxiety is about pain, that doesn't seem to help her anxiety. We have practiced & practiced at home, but she breaks down when she sees the nurse with the needle. I found out recently that it only takes about 3 months to get qualified to do blood draws, so if this continues to be an issue, I may be heading back to school at night!!! I had to do a blood draw myself this week & I will say that it does hurt a little in the vein. I'm not very sensitive, but she is - and she has to do 11 vials of blood. I'll be happy if she gets one done today. Thanks again -

There is a type of OCD called "bad thoughts" OCD. It is treated with ERP therapy. If you have an old therapist that is used to anxiety, be sure to ask if they are specifically trained on ERP. Regular talk therapy does not work for OCD.

Thanks so much for taking the time to type it all down! We have done some CBT following a book for grown ups, but we'll definitely get the books you recommend, and start working on it again. Dr. Latimer said it doesn't really work, but I think she meant it doesn't really work BY ITSELF. I know a lot of what I see are very hard set habits by now. We are starting new abxs and steroids tomorrow. I will give it a week and then slowing start picking apart the monster! I am so hoping this will work! If you ever need to brainstorm ideas for a specific compulsion, just let me know. I had a good therapist to help us come up with creative ways to approach it, and that really helped. I also went back to pediatric game ideas, and talked to a kindergarden teacher about ideas - often for a much younger child & then incorporated the ERP into the game. So for example, one of Meg's huge fears was putting her hand over her heart (she thought this meant that she was wishing for something bad to happen - nice at a basketball game during the pledge....everyone staring, like "why doesn't that mom get her kid to behave!"). So we'd play the card game war, and if she lost a war, then she had to put her hand over her heart for 20 seconds. Then we'd go back to playing the game. If I lost a war, then I'd have to do something equally hard for me, like do a cartwheel (not attractive, let me tell you,; I am 40 and could not do a cartwheel at 18!). The game helped the ERP go down - kind of like the "spoonful of sugar". We did this with monopoly, card games, hand clapping games, finger war, etc.

Where did you get that cute dancing bean?!?! I say that deserves a happy dance! Hope it lasts - I always try not to celebrate or to panic until 3 days have passed. I'll keep my fingers crossed for the next 2! I felt like we could see results very fast in terms of intensity, but we were clocking her very closely, so the changes were small but noticable for the first week.

Hi all - need some advice. Meg is nearly 99% now - no real OCD left. Maybe 1 compulsion per day, but very habit based, not at all stressful. She is doing well at school & at home - much less hyper, better focus, no nighttime issues, no clothing issues, etc. She is very happy and talks about it all the time. Anyway, at this point, our big residual problem is around blood draws. Meg had 2 horrendous experiences during PANDAS (one time a newbie yanked half the thing out & blood went everywhere - all over both of us. The next time, an evil nurse threatened to "hold her down" because she yanked her arm just one time. Meg had claustropbia along with everything else at the time, so not good.) Anyway, we have been trying to get a blood draw from her for 2 months now. We went to therapy about it - her therapist does not think it is OCD/PANDAS, and neither do I. It is clearly anxiety & also just that Meg has put her foot down (I don't really blame her!). We did therapy for her on this issue over the last month - tons of practice at home & found an awesome nurse who has also been taking it step by step with her. Well, today should have finally been a full vial. And Meg went backwards and refused to do the draw. Needless to say, I am VERY frustrated. Whew, I swear, I have the patience of Job when we are in a PANDAS episode - but this will drive me nutty . I think we should medicate her for the next draw, so she can be successful and start building her confidence about this. I tried Benedryl and Motrin today, and that did not touch it. Any recos? I want to call her ped in the morning & I know it will be better if I have a specific request. I am thinking of something like a kid valium? Would love some ideas! Thanks -

Yeah!!! Every good day counts - glad for you!

Hi Isobel - ERP therapy is called Exposure & Ritual Prevention. A CBT therapist can do this (it's a kind of CBT) - BUT most CBT therapists are NOT trained in ERP for OCD, especially in the pediatric community - so be careful. ESsentially, ERP's premise is that instead of avoiding the anxiety situation or reassuring - you expose them to the anxiety - in tiny steps. It is easiest to talk about this in terms of examples, so is there a specific behavior that you think is OCD related and that you think your child would like to get rid of? Here is an example for us - Meg was very afraid of robbers in the house. This became an enormous obsession, and her compulsion was to be with a safe person. So she could not play alone - or use the restroom or bathe - or sleep. She had no privacy and neither did I. She became my constant shadow. And she would scream "Mom" at the top of her lungs if I went in another room - in a clear panic. One day, she was screaming so much that she could not hear me call back. I was...um...occupied, so I could not run to her. So she ended up running out of the house & down the drive in a terror. I am not sure where she was going. That was one of those moments when I knew we had to do something to help her! So the therapy for this was to break the compulsion down into a tiny tiny goal. We talked about what was happening (strongly advise ordering "What to do When Your Brain Gets Stuck" - it is a workbook for kids that explains OCD - every kid I have given this to LOVES it. It leaves them feeling much less alone, if nothing else) and then developed a plan for what we'd try. She agreed to the plan -that is important. Then we had a reward system - for us, this was mostly a "prize box" with a point system to earn based on "our bravery work". We also named the OCD - the worryman - so that we could talk about it. For a long time, she would deny that something was OCD, but we would just repeatedly calmly say "I am sorry that the worryman is being so mean to you - I can help you learn some tools to get rid of him". Anyway, our first step was for Megan to go in her room & I would stand on the other side of the door. I think we set a 5 minute goal. Well that was a bust!!! So we set a tiny goal - I have lost track now, but maybe 20 seconds! I would then go in & hug her & tell her she got a point & then we'd do it again. We might do 20 seconds for 10 times - until it became easy and boring. Then we'd do it for 40 seconds. Then a minute. Then I might move to the stairs & do a minute on that. We would practice about 10 times, or 30 minutes per ERP work session. The screaming "mom" went away first. She learned to just come look for me. Eventually, after a week or two, I could go downstairs for 5 minutes. And then we worked up to 15 minutes. At that point, it kind of went away. I really felt like I was training a stroke victim. How could my child have forgotten how to be alone for 1 minute? So I kind of treated her like a stroke victim - firm but empathetic, always saying that she could do it. Then we would always go to something fun after we worked so very hard. Another tool we used when she was worried about robbers, was to use a "loop". Since Meg was so young, we did this in a song. We would sing to the tune of hi ho the derio (sp? weird word!) - she would cry and cry for the first few verses, but then would calm down. So instead of saying "Meg there are no robbers in our house!" I would say - let's sing the robber song together. So like "there are robbers in my house, there are robbers in my house, hi ho the derrio, there are robbers in my house". Then we'd use each room of the house "there are robbers in the closet, there are robbers in the closet...." etc. We usually tried to do about 10 verses and then when she'd start to get bored (ie, the anxiety was gone), I'd change it up & do something like "there are rabbits in the potty" - just for fun. Looping really worked as exposure to things that we clearly could not really do (or at least we hope not!!!) We know a lot of very funny songs now. For parents, I really recommend reading Aureen Wagners "What to do when your child has Obsessive Compulsive Disorder". I never imagined how many ways that OCD could impact her life, and I found it really challenging to understand the "mind" compulsions that I could not easily see. Again, so this post is not taken out of context - this is a tool which if well practiced can help your child keep from spiraling out of control - maybe not in the worst of an episode, but for many kids. And it really worked to reduce the impact of OCD even when we were untreated. But I would not recommend this for a PANDAS child without medical treatment as well. I found that when we added the abx, the ERP work went SO much faster and so much more easily. I don't want another episode, but we will immediately go to increased antibiotics & likely steroids in the hopes of keeping an episode down to a week or two instead of months. There are tons of other tools - and they work best with the child understanding how they are going to retrain their brain. At this point, our entire family practices ERP. It sort of becomes the way you live. Sometimes Meg will say "mom, do you have a worryman"? And she is usually right. We also would look for worrymen in other people. It is easy to see in a mall!

I hear this a lot with PANDAS children, although we never had any joint pain (a LOT of stomach pain!). Just be sure to rule out Lyme & PANDAS. If you research on Lyme, there are specific test that you need to run. I think these two illnesses should be ruled out anytime there is joint pain or rashes and OCD. Doesn't mean that it is either of these, but it is worth checking. We had a rheumatologist rule out both, after some suspicious blood tests at our neurologist.

This is a behavorial technique that really does help us too - I had to learn how to become really really calm in the worst of it. We learned to stop homework before the spiral started. At anything, if she becomes frustrated we stop immediately, and do something else - for us, usually something like a head stand. Then we go back to it. When we started this, she would scream & have a tantrum. But we lasted through that, and now it works. She is still mad about it, but she knows that when you are frustrated, you can't get anything done. This is true for all of us, but usually the break would let us talk about it and make a new plan for whatever needed to get done. Of course if it is an OCD repeat, then that has to be dealt with or the frustration will just keep repeating. I know it sounds mean, but I would take the flash cards away. Just like a young child's tantrum, you have to be ready for the storm but it does pass. Susan - this may not work for you - but I so hope that your behavorist can help with some techniques for your beautiful daughter. I found that I had to become a whole new kind of mom. I hated it for a long time & mourned my "ideal mom" state, but now I ok with it. Meg knows how much I love her, and we try to explain anything that we need to do to help her. And I really hope you consult with Latimer!!! Hate insurance!!!

We did ERP therapy & it did help us get through every day much more easily. But after antibiotics, she can do the ERP SO much more easily. I do have to say that a lot of it was how we reacted to her, so that is part of the success. But also, it was amazingly hard work. It would take doing one specific task about 50 - 200 times before she could start to do it herself. But much of it was giving her tools to use, that we directed her on, that kept the OCD from spiraling in a circle. We are huge believers in ERP, but that is just our story. As an example, she would scream "my stomach hurts & I am going to throw up" all the time & then run to restroom, refuse food, not wear clothes - whatever you can imagine. So we put together a list of "what makes our stomach hurt" and she carried this everywhere - we had 10 copies - one in her pocket, one in every room, one I carried around. And instead of responding to her with reassurance, I would ask her to read the list and see if any of those things might be the issue (needing to pee, needing to poop, being hungry, being really full - it was like she lost the ability to read her own body anymore). Then she would read the list out loud, crying the entire time - and then we'd make up another funny reason (like or, it could be tiny people putting up belly art?). Then we would say, is it possible that you are hungry or need to poop? And after some time, she could pick the reason. She still felt the fear, but it did not dial out of control. The antibiotic seems to be making the fear go away or dimenish in intensity by so much. I have to say, she is a really smart kid - but she could not remember this tool for 5 minutes, without hundreds of repititions. But the tool itself did calm each episode, even though the panic was there - it just did not spiral. And I say this every time - I firmly believe that treating the PANDAS with antibiotics or other treatments is most of the battle. Maybe it is because her OCD was so severe, but in many ways, it felt like some of OCD had become a habit. We also did habit reversal therapy for things like spitting which at the worst, was nearly non-stop. We would have to change her shirt multiple times because she was soaked. Every picture from that time has big rashes all around her mouth. And it took 3 -4 weeks of work to stop spitting. I can't even count how many time of practice or explain how much work it was. ERP is just a tool - and if it works, it is very helpful.

No actually, I really do feel confident that Meg has PANDAS, given the relationship to strep exposure & ear infections - combined with all her other symptoms & the prednisone test. But we started with Lupus & she was tested for Lyme a year ago (not the right tests, I am sure) due to her high ANA levels. But she does not have joint pain or any of the other signs, and I really think all of her inflamation is due to PANDAS. But, I am now obsessed with reading about "causes" of mental disorders. It's amazing information. And I just want to keep learning so that should our course take an unusual turn, I'll be ready. I am readying our family for IVIG, in case that may become necessary, as I know I'll meet resistance, and want to be sure I am well educated. And that is the first time that I've found a comprehensive list of Lyme symptoms.

Vodka with Cranberry & a Lime twist . Oh I wish I were in DC!!!