Megs_Mom

Are you looking for his chart that he used to track symptoms? I'll try to hunt that one down, or I'm sure someone will link. Here is a thread that shows a lot of his summarys, such as how to diagnose, how to treat, how IVIG might work, etc. http://www.latitudes.org/forums/index.php?showtopic=3928

This is such an awesome comment that I have to add on! (SmaryJ - love you too - and you know more than me lots of the time!!!) The great thing about ERP therapy is that it is completely adaptable to each family (mom, often) and child. So you can put your personal style into the devlepment of the plan - and more importantly, use it how it will work best for your child. After all, you do know your child best. So the plan I outlined above is pretty "classic" - by the book, if you will. But you don't have to have a lot of participation from your child - and at the start you might not! You just have to know your childs limits and ability to participate - so that you can make the ERP hard enough to work - but easy enough to be successful. There are parents whose kids have Aspergers, that have been able to develop appropriate plans for that child. An example of this, was during a very severe period of seperation anxiety - I won't go into the details because they still make me cry. (Obsession: my mom will leave me - good thing I am not an underconfident mom - that was a lovely one! Compulsion: be able to see/touch mom at all times). Anyway, a therapist suggested that we have her try to stay in her room alone, with door closed while I was in the hallway. She suggested 20 minutes as the goal, and that we start in 5 minute increments. Well, this was ridiculous! Even the idea of talking to Meg about being alone for 5 minutes was an impossible exposure that could trigger a panic attack! what we developed was an agreement with Meg that she could try to stay alone in her room, with door OPEN, with me in the hall immediately outside the room for 5 SECONDS! The first time we tried was a fiasco - and she ran out before I could count to one. So when we made it to 5 seconds, it was such a huge deal, and we rewarded accordingly. We practiced 5 seconds for a while before we moved to 10 seconds, then 30, then 60, etc. There was no way to do a fear heirarchy - everything was a 10. 5 seconds was our limit, and we had to build from there. We have had times when even discussing OCD was an exposure. We might spend a few weeks just talking for 5-10 minutes a day about what OCD is, to build some confidence that she could help herself at some point. That alone was an exposure and was enough for that time. ERP was clearly NOT a cure for us - I'm experienced in doing ERP because it was the only tool we had for way too long. It was - and remains - a great tool to help us get through rough stuff - and nowadays some minor things. There were times when OCD was literally controlling in some way, every minute of her waking hours. I hope someday she never needs one second of it again. But for us, the PANDAS seems to be chronic, and while she is in an extremely good place, we cannot yet claim 100% for a year. I hope we find the key to why & we continue to search!

Ok, right there, I am seeing red!!!!! Study after study for childhood and adult OCD (not pandas, just regular OCD) shows that ERP therapy is AS effective if not more than SSRI's, and that therapy works longer (you come off SSRI, the OCD comes back - but therapy tools work for a lifetime). I'm not against medication - but that is a really odd statement. I wish therapist would just say "I don't know how to treat your child", rather than fumbling about! Ok, I am back to calm. There are no studies for PANDAS kids and the effectiveness of erp therapy - but there are studies about SSRI's and that the dose needs to start very low and to be careful to avoid activation. You can show her the NIMH directors blog about PANDAS if you want to give her some real facts - there is no doubt anymore that it exists - we just need more research. Did your daughter's tummy aches start around the same time as PANDAS? Our daughter's did - and we discovered stomach ulcers. Something about PANDAS/PITAND for our daughter seems to greatly increase her stomach acid, causing ulcers, reflux and stomach ache. We use Prevacid for this, but are currently in a search for how to stop this & do a more natural plan. Glad this made sense, and hope to hear good things about your daughter. I'm so glad to hear that you have an appt with a specialist in September. I have similar concerns about abx long term, but the benefit we are getting now so out weighs the other worries, so we just try to keep up the probiotics for now!

Thanks for the update - glad he is ok!

Thanks Meg! We do have WTDIYBGS, have not gotten all the way through it but I had sort of forgotten about it. She really liked getting those skills but rarely puts them into play. I need to work with her more on it. I talked to her about it this morning, got her to laugh a little at OCD, told her about Meg so she'd know she's not alone. Luckily the weather is not looking as bad as yesterday said it would be. She's still asking if hse has to go but I think she will go, but it will be tough this morning. I'm resistant to go to a specialist since the one I did see didn't think he could help us. But her OCD at that time was not bad and he was overwhelmed by just learning about pandas from me I think. Anyway, right now we are overwhelmed with my physical therapy appts, allergy shot appts, school starting, crazy work, I don't have enough time in the day to schedule everything. I will seriously consider it though once all my appts die down. Susan Your girls are such smart resiliant kids - maybe just practicing the skills at home will be enough for her to cope! Good luck - glad to hear this morning is kind of calm. We did it at home for a long time, until a major episode overwhemlmed us (untreated at that time). now that we are treated, and have practiced a lot, so far, we have never needed any help for blips - just pull the book back out, review a skill, and off we go. (we went through a bunch of darn therapists before we found the right one - you may want to leave all the PANDAS to the side & just ask for tools to use with OCD behaviors. I have yet to find anyone that can help us with it ALL - I'm the "case manager" and we have a team of professionals to help us). Pain in the butt to find the time - I am with you on that!

Hi Susie – wow, great catch! Yes, that is OCD – you must be a very intuitive mom! The obsession is to “match”, the compulsion is to bring the clothes with you and to change. You know it is OCD because if the compulsion is not followed, she will “burst” and the resulting anxiety will ruin the play date. Allowing her to bring the clothes is called “accommodation”, but it’s not as bad as it sounds. When OCD comes out of no-where, like it does in PANDAS, we all get caught up in the OCD, as we don’t have any tools to deal with it (it is often counter intuititive to normal parenting) and it can be so severe that it feels like there is nothing to do but reassure. I am not a therapist, just a mom – but the below are some things that worked for us, and that you can read about in books to learn how to do at home – or you can do with a good therapist. If you have a therapist that is not suggesting these kinds of “erp” steps, then you may want to interview some others. Most therapists understand anxiety – but OCD is more than anxiety and can be harder to treat if you don’t understand it. First, I assume you dd is getting some medical treatment (abx? Motrin?), so I’ll just focus on the therapy here. Therapy for OCD is called ERP therapy – Exposure and Ritual Prevention – and it does NOT mean going cold turkey on accommodation. The first step is CBT for OCD – which means educating the child about what is happening in her brain. This is important, as realizing that they are being “attacked by OCD” and that they can “fight back” and that it happens to tons and tons of kids, will help normalize their experience, and help them gain courage to use some tools to fight against the OCD. The next step is to break the ritual down into tiny steps. When you first do this as a parent, it seems overwhelming. It’s just one big mess and how will they ever take the first step?! Well, as an example, in this situation, you would spend 4-5 days with your daughter, setting up a fear thermometer (how scary from 1-10 would “not doing a compulsion” be) and then discussing baby steps and ranking them from 1-10. I always start by telling my daughter that I am not going to force her to do any of the things that we discuss. That if she wishes to do them, that it will be her decision (actually, I am going to reward the heck out of her, but let’s hold that for a sec). Oh, and you might call the thermometer the “burst” thermometer if that helps her identify the feeling better. (This kind of OCD is often called “just right” ocd, and it is not really a feeling of fear – more a need to feel a certain way. The process of allowing your body to adjust to the OCD feeling is called “habituation”. If you want to know how this feels yourself, here is a cool exercise. Take your finger and run it the wrong direction in your eyebrow, from your cheek to your nose, messing up those hairs. Now, see how long you can leave it that way.) In this case, you might have some of the following in her fear hierarchy: • Don’t take any clothes to a play date, don’t change – fear rank of 10 • Take clothes with me to a play date, don’t change – fear rank of 10 • Take clothes with me to a play date, change only my shirt – fear rank of 8 • Take clothes with me to play date, change only my shirt & shorts (not socks, shoes, headband, etc – list them all) – fear rank of 7 • Etc…. • Take clothes with me to a play date, change everything except my hair band – fear rank of 2 You might even have to break some steps down into minutes – ex: take clothes with me to a play date, change everything except for a hairband for 30 seconds (1 min, 2 min, 5 min, etc). Any compulsion can have a million steps in it – as tiny as you can think of! And you really don’t have to know the “reason” for the compulsion. That’s why I like “physical” compulsions – there is always something to change about them. Mental ones are harder – but you can still do it. Once you have found a step that is only a 2 – something that SHE thinks she can tolerate. Then set up a reward program for her, based on something that she wants to do. You might feel weird rewarding her for not wearing a hair tie for 30 seconds – but you are trying to slowly build up her confidence to trust that she CAN do a harder step. Building motivation for children is hard – I think of it like jumping out of an airplane. Tell a adult that she is jumping out of an airplane tonight – and she WILL refuse! No way! Tell an adult that you are going to learn to jump off the back step – but only the bottom one – and even a kid will jump. After a few weeks, you have worked up to jumping off a small wall, then using a parachute, then flying in the plane, then looking out the window, then jumping with an instructor, etc, etc. This is how OCD feels to a child – like you are asking them to jump out of the plane at 10,000 feet. Start with a step, let it take a while. Let them build confidence with baby steps before you move to the next baby step. Plan the reward with her ahead of time. I like immediate gratification for this age, and usually have a prize box with me at all times – go to Family Dollar or WalMart’s dollar section, and you can get a lot of “stuff” for $20. Then you might also add “coupons” for more TV time (we limit to 30 minutes a day of “unearned TV”, computer, game with mom, extra book at bed, getting to hold the leash for the dog – whatever is age appropriate & your child wants to do naturally – stuff like mom makes pancakes on a weekday or dad tries to stand on his head – can be REALLY motivational!) Remember, that when an effort is made, a simple hug and “wow, that was a great try, let’s take a break for 5 minutes and then see if you can take off the hairband for 30 seconds when you are ready” can be very helpful as well. I like the workbook “what to do when your brain gets stuck” – available on amazon – it’s awesome to read with your child, and it gives you good ideas as well. Sorry for the long post – I love making up OCD hierarchies – and this one is a different one than the usual! I’m so sorry your child has PANDAS. It is an awful disease! Our daughter had severe sudden onset OCD that caused panic and agoraphobia on top of the compulsions and rituals. Reassurance and avoidance were big in our house. Breaking down the rituals became a part of how we lived. Once we FINALLY got medical help, the ERP became much easier to do, and really helped us break through the last habits of OCD. Now we use it as a tool during “blips”, as my daughter (thus far) has remained chronic PANDAS with small blips breaking through right before any respiratory illness. We know she is getting sick about 3 days before she shows any signs of it! But between a medical strategy and ERP, it is not a huge issue. Hope your child responds to medical treatment at 100%!!!

Scary! Yeah. 'cause the tick fills up with one disease so the 2nd one doesn't fit? (And I'm sure it's also impossible that your son could have been bitten by more than 1 tick!) There is a great study of tics (the bugs, not the movements) in NY, showing that 30% carry 2 microbes. And they did not test for all common varients, just a few - and still found multiple. Here is the link: http://cii.columbia.edu/pub/documents/AssessmentofPolymicrobialInfectionsinTicksinNYS.pdf (for those that are slow like me "polymicrobial" means "more than one microbe").

Oh, Susan - I know how that feels! It's so hard to know that a major issue is on the horizon and you are heading right towards it. Dcmom is right - it's not the sort of thing that you can develop tools to deal with overnight. But once a child is on a medical treatment plan - especially if you think you have chronic PANDAS (and possibly other autoimmune involvement) then it might be a good time to help them to develop some tools to deal with the OCD and Panic. I am always amazed at how grateful kids are when they start to understand how their brain works, and how with medical treatment and with some powerful little brain tools - they can begin to win the war and beat up some of the OCD. Have you ever read "what to do if your brain gets stuck"? This might be helpful - but the best place to start would likely be with a good OCD therapist who does CBT and ERP. There are quite a few in the Charlotte area now, if you need any recommendation. It won't be a cure, since they have PANDAS, but it might help them (and you!) deal with episodes and blips. I think OCD does not just rule the child's life, it can rule the entire family's! Fear of weather/tornados was one of Meg's earliest severe issues - she would run screaming from one window to the next, in terror that the trees were falling on us and that she'd be left alone (apparantly I was the one that was going to be nailed by the tree!!! ) Even a jet flying overhead would send her into a panic. She would beg her dad to turn on the weather report. It was awful, as has been every OCD issues we've had along the way. We tried logic and reassurance, and that did nothing for her fear. This was back in the days when we did not have medical treatment for her - but she always tells people with great pride that "she killed the weather worryman". She did it with persistence and slow baby steps in ERP therapy. I'll be thinking about you tomorrow - hope this crazy weather lets up soon! I think the next 7 days or so are pretty calm - so that should help a little!!

I think you are absolutely right, but am not sure that assurance will help you! I assume you have already begged? I'd take the pen, and start searching for another pediatrician. Maybe you can find one through other moms in your area. Ask a mom of a child w autism, or call local autism society for referrals. Glad you have dr l in a month. Call and see if you can go on cancel list, if you can get there on short notice. On the positive, she will be pleased to see such immediate response to augment! Frustrating, but so great that you are on the right path!

I knew you would comment! Yep, I figured that was just a really passionate parent, sharing. We all have our own way. Some days, I just feel really OLD! Why isn't there a grey haired emoticon?

It's always interesting on site where parents are looking for answers for their children. It can be very passionate, and sometimes controversial, especially when we are bucking the conventional advice, and looking for new answers for our children. One of the things I love about this site is that a lot of ideas are tossed out there. We are VERY slow to try new things, because we are in pretty good shape right now. But we can't stop searching for answers, and I appreciate so much, hearing about the paths that others are on. I often reject that information due to other experiences we have had. And then sometimes, a year later even, I may go back to it and think about it with a new perspective. We evaluate everything with a careful thought of "will this harm her in any way" - it makes us slow to the best answer sometimes. But when we do reach it, we do so with confidence that it is the best thing to try at that time. There was a time that I was scared to death of antibiotics. Now I thank the heavens that we found a doctor brave enough to try this for my daughter - and for the best friend that kept encouraging me to take a risk, and who helped me evaluate that risk through research and facts. I don't think I ever take information here at face value. There was even one post recently that I wondered if it was a salesperson! But over time, you learn to evaluate the posts and take some value from each one. My best friend and I were just talking about this forum, and how open it has been to other illnesses beyond strep. I think we are both looking for a infection/inflamation based neuropsychiatric illness - and we find both support and answers here. We are both used to being yelled at on another site, for suggesting that a child with sudden onset OCD might have PANDAS. We have learned not to take it too seriously, and to try to help the best we can, without being too emphatic. We don't know it all, that is for sure - but each answer that we have been blessed to find has made our homes happier places. Thanks for sharing - your passions, your doubts, your fears. It's what makes this forum a home.

We have used 2 abs before, to no Ill effects.depends on abc mix, but sometimes 2 are needed for a variety of reasons. Hope it works for her!!!!!

I like the combo for pandas pitands and consider Lyme to be pitands. I learned about Lyme on this board. I used to be able to hit a new post button at the top of the forum and see most recent activity on all forums. Is there a way to do this now? If so then having two boards might be better, as I imagine a huge number of Lyme parents will come? If not, then I hate to the two broken up.

Thanks buster. For this mom of a no tics, no titers girl, it's reassuring to see a pattern. This would be a very interesting research study, that might help in diagnostic criteria. We had the restrictive eating as well, and my biggest fear is that this would come back to us when she is a teen. You've helped clarify my thinking about why I want 100%, not 98% with continued minor blips. Thank you.

Philly - You made me cry! I think all the time about what if I had refused to accept the diagnosis of "not pandas" when her strep titers were low. I think I could have given her a year of joy back. It's hard to look back sometimes. Hope your son is doing better now. Indiana Rose - maybe find a good DAN doc that will work with you - start with saying if the abx cures his mind, then how do we ensure that his gut will stay health as well. A really ggood DAN! doc will understand that you have to make choices and his job is to help you keep the rest of the body healthy. Good luck - we all so hope to hear good news from you. YYou will like Dr. k - he is very kind.

Hey - yep, full allergy testing (nothing), immunological testing (nothing), testing for lupus (high ana, finally declining with abx therapy - odd - no other signs of lupus), pretty much all else you can imagine, except Lyme (on the schedule). Took out her adnoids, put in tubes, use swimmers ear drops, attack ear infections early in the process. Each month is same level of azith - each month is similar pattern of breakthrough - worse if an infection, but some breakthrough either way, just for a few days till abx is raised. Not a huge deal to her life, but clearly a pattern that I'd like to break. 100% sounds greedy, but it would be lovely.

I almost just PM'd you about this! That is the direction that I am leaning - asking for a higher daily dose and be done with it. My suspicion is that the initial 3 days of each month builds her up enough, and then as we near the end of the month, that the amount in her body is too low to keep up with inflamation, and we see a mild breakthrough. I am just curious as to whether kids that are 250 also see breakthrough OCD on a regular basis or not. My gut is that they do not, and that they need to raise the strenght on a more regular basis. Or maybe I just keep way too many charts . But this one is now pretty clear. So I think I'll ask for the higher prescription - it sounds like that is becoming more common than when this first started for us. Thanks for the response!

Our daughter, age 9, 62 lbs, is on an alternating dose of Azith - 250 mg daily each month for 3 days, then down to 100 mg every other day for 25 days. It's worked well for her (she had 2 weeks at 250 initially), but she had a few days of breakthrough every single month, towards day 22 - 28. Either she gets some kind of mild infection & it is worse, or it's just a mild blip that we can deal with using Motrin and ERP. If she gets an infection (ear usually) then we just move the full dose up & she is fine in 3 days. She communicates really well, so we are on top of infection unlike in the past when we were not hyper parents about bringing a doc into the mix for a cold, etc. Generally these last only a few days - and compared to the darkness of an exacerbation, are usually not worth worrying about. But no way could we pull her off the Azith. History - she is severe sudden onset OCD at age 3.5 (azith for ear infection, remission in 2 weeks, 100% on OCD, 90% on sensory), 6.5 (untreated remission after 3 months - at 70-80%) and 7.5 (2 spikes in close proximity, 80% remission for one week of Pred burst, finally treated with Azith after 3 months, 99% remission after 2 weeks, held for one year). Sensory integration disorder, OCD (lot of kinds), Agoraphobia, Panic Disorder, Sep Anxiety and Eating Issues. We are now at the one year mark without a severe exacerbation. She is a happy kid (except for needle phobia and baby talk that now seems to be a habit - she can talk regular, but forgets a lot. But these blips are just driving me nutty, as it seems clear that the Azith is helping her on a monthly basis, rather than being preventative. She is in remission, it just seems fragile. We have Prednisone in the fridge, but have never used it over the last year. Our immunologist wants us to use the Prednisone, and keep the abx at the lower level. So we are going to see Dr. L in a few weeks, and I am thinking a lot about what might be going on. I wonder if your body can build up a tolerance to the Azith - I would not want to lose this as a tool - this thought argues in favor of staying at a low level, since it is such a miracle drug for us. But I'm not sure the resistance argument is true. Or should we be asking for an increase in her dose for a few months or longer? I know a lot of people here are at 250 daily, and wonder if you also need a regular increase - in other words will I see the same pattern of needing to increase periodically just with a higher base? We will also get the Igenex test signed for at this appt, and suck it up for another blood draw (nightmare of our life!), and ask for Parvo and Myco testing, just in case, while the darn needle is in there.... Probably take another month to get it done. Ugh. Thanks for your thoughts.

If you get your school district to do this, I will be VERY impressed! If you want an idea for how to have the social worker to take a really good CBT/ERP training that is specifically for OCD (CBT is a pretty broad category), then try this website for the IOCDF - they offer training institutes quite a few times a year. http://www.ocfoundation.org/BTTI.aspx. http://www.ocfoundation.org/uploadedFiles/BTTI_Handbook_and_Program_Description.pdf This is a description of the program. I think the current training is sold out, but you may also want to call & talk to them about when the next one is. You go girl!

I kind of wish we could stop using the word crazy on this site. No one is going to call it the crazy kid syndrome. Neuropsychiatric illnesses are those that effect the brain for a wide variety of reasons. I expect that lots of areas of mental illness will likely be found to have an infectious base. I'd like to advocate that whether the mental illness is a infection or inflamation based, or a genetic base, that we could be kind about those. There are all kinds of parents here. The word neuropsychiatric is in the current definition of PANDAS. I think the issue is to take the stigma off diseases of the brain, and we are the first line in doing that. I admit to being a little sensitive about that word. And I doubt that our guesses about the name are accurate anyway!

I'm with Smarty on this one - baby steps have always been a winner for us. Peg, once you get near the elevator, simply pressing buttons might be a good first step - then touching the door, then putting one foot in the door. Once she gets in the door, letting her press buttons while the door is securely held open by an adult, letting her just sit in there for 10 minutes at a time if she is ready, etc. Just staring at the elevator, and going an inch or two forward might be enough for a few weeks time. We literally dealt with phobias and with seperation anxiety one inch at a time. Painful to watch, but once you adjust your own mind to incremental success, it is much easier (not a problem for you, Peg - but for some of us, it takes some getting used to). I tend to use the rule of thumb that if they WANT to do something, then they have to be given the opportunity. We have to believe in them at least as much as they believe in themselves. Good luck - what a super brave girl you have.

Please don't worry about this! The brain is so vast, and so powerful - even a small damage could be taken over by other areas, so this is just not worth your time. Think about it - he was doing well - if it were brain damage, he would not get better & then worse! It is much more likely that he has either had a re-exposure, or that the hard work is so much for him to process, that he is having a "burst of OCD". Sometimes this happens as "ocd fights back" and then you win, and it calms quite a bit. You'll know in a day or so. Hope it improves quickly.

Ask her if she is also advocating against abx being given to cattle! Geez! I agree, not point in fighting, just fire.

There are quite a few in and outpatient ERP programs. Another great one is in FL - we considered traveling there at the worst. If you go to the OCD Foundations website, they have a section on intensive therapy programs.

I'm so glad you are finding some relief. That is SO impressive that he has already come down from a 33 to a 24! I can't imagine how bad it is at a 33, and how much courage it must take at that point to do the work. I know a lot about the upper 20's and they are not pleasant. I hope the next week brings him down into the teens and that you can sustain those gains at home. It take a tough and caring mom to do a program like this - and a very brave child. Please tell him that he has our utmost respect. In combination with ERP, thus far, we find abx to be quite effective. For us, Azith was the right combination. Hope to hear more when you get back home.