Megs_Mom

Hi - I am so sorry you are having such a tough time. If I were you, I'd definitely do the Cunningham test. Not a lot else will make you feel comfortable that it's PANDAS, and let you focus your energies on an infectious cause. It certainly sounds like that is the situation. I would ask for another month of abx while you are testing, just to be safe. Then I would quickly run an immune panel and an allergy panel for your son. I spoke with one of the PANDAS "experts" (doc, not parent ) recently about what to do if a virus has become chronic, and the suggestion that came back was that this would be a situation where IVIG would be a good answer. I would not suggest IVIG casually, but this may be something you need to explore. I would also find an ERP therapist, if you son has any OCD - this will help him cope while you are finding answers for him. There are some great books out there - there is a thread about this on the forum. I'm sure others will weigh in here - we had a dramatic and debilitating case, but our solution, so far has been relatively simple, so I don't have the range of experience that many here do on the treatment protocols. But my heart goes out to you, and I hope you find answers soon.

Welcome to my world . By the time we got help, it was over. Then when we needed help again, we couldn't get in. Repeat again. That's why I am so obsessive about having a team of docs at the ready!

We still get a reaction to illness - but now that she is treated, (at least so far, all fingers and toes crossed) we just don't get the dramatic peaks we used to have. Just nice little manageable rolling hills. After so long for you, I'm sure it feels wierd - but we see the same thing. Glad no rage!!!

Oh Tamistwins.... I wish I could give you a real hug and find a way to tell you that I felt that way for years. When my son was younger and so very disrespectful to me and always hurting others I just could not believe that he was my child and kept wondering what I did to deserve this. He is not that way anymore, but he does still have rages when he is in an exacerbation. Only now he and I both know what it is and he is old enough to talk with me about it. Dr. B is right that it is not your son's fault, but that does not mean that your son should not be responsible for any parts of his behavior. It is so difficult to sort out how much to expect and when to start expecting more. I wish we had child psychologists that specialized in PANDAS. We have a few physical doctors treating it across the country, but I don't know of any psychologists or behavioral counselors.... does anyone else? Now, you said your son has had IVIG and is on antibiotics. How long ago was the IVIG, and what antibiotic is he on? Is he taking anything else, like diflucan? Probiotics? Also, do you have a way of keeping track of behaviors every day. It is important to keep track of behaviors so you can see when there are small changes. Sometimes our kids are getting better or worse and we do not realize it right away. I am sorry to hit you with so many questions. You have been reading this forum for a while, so I am sure you have thought of these things, but perhaps there are suggestions that others can make in the way of supplements or timing of medication that could help you. I will be looking for you reply! If you want to add a psychologist or therapist, to learn tools to deal with OCD and all the related issues, as well as the issues that high anxiety can create - you are looking for a Pediatric ERP therapist. You can check the OCFoundations Website. To be frank, they are hard to find, depending on your area. If the don't understand ERP therapy (as well as CBT), then you really are wasting your money (IMO!!). ERP is not a cure for a PANDAS child, but you - and your child - can learn a ton of tools that can take the edge off the disease. We found it very helpful. We went to Duke in NC, at the worst of it (PCAAD), and while they did not specialize in PANDAS (we used medical doctors for that) they do specialize in ERP. In a lot of ways, they were most helpful to me - I sat in every session, as often my daughter could not respond well, and I learned pretty amazing techniques to use with her. These were not intuitive parenting skills - having a child with OCD, whatever the cause, is a pretty overwhelming situation.

That's an interesting thought . . . the excess stomach acid. My DS has always LOVED pasta with tomato sauce and pizza, but, especially when the exacerbation was at its height, he got concerned that eating either would "bother his stomach" and he took to asking if he could have a Tums before we even sat down to a dinner with either of those on the menu! Doesn't anxiety churn up stomach acid? Maybe that's why PANDAS seems to bring it up as an issue, too. But I'm curious about Meg's ulcers. I thought that it's now known that ulcers are caused by bacteria, rather than by "stress" or even excess acid?! Or, like most things in life, is it actually a combination or "perfect storm" of conditions? That is interesting. I hear a lot about stomach sensitivity, but not the cause. I really don't think it's stress - the stomach issues started immediately with the PANDAS symptoms - and were severe enough to cause multiple ulcers in a 6 year old. I had a lot of docs say stress, but after a lot of research, that seems to be one of those legends that are not really based in fact (although I do think stress can increase any issue). We did an endoscope for her (and tested for celiac) but did not find H Pylori. We are now working with a gastro in DC and may do another scope, as the stomach acid issue is still there - she takes Prevacid daily, but in a minor blip, the acid breaks through & she tastes metal or throw up in her mouth, and has a stomach ache. We deal with it, but it seems wrong. We did a LOT of therapy to learn to identify and describe the actual physical symptoms. Her OCD also centered around throwing up, and the ulcers were clearing reinforcing that constantly. I'll be interested to see if this new doc can find what is causing the stomach ulcers, as I worry a lot that this gut issue might be what allows the opening in the bbb. As a side note, we found the stomach ulcers 2 weeks before we started abx, so that was not related. She now takes a probiotic. We only use Motrin when it is urgent, due to this issue. Ideas welcome (sorry to hijack your thread, smartyjones!!!)

We carried peanut butter crackers and bags of Kashi Crunch (carb & protein) around all the time & if she even looked sideways I'd throw one at her!!! It was like a food emergency! I had her tested for blood sugar issues, diabetes - nothing came up. I KNOW that food was part of it. At the worst, when she woke up, I would already be by her bedside, with a meal ready to go (tiny bites, as she could not face large amounts of food). If I was off schedule, there was heck to pay. One wierd thing, was that she would never know that she was hungry - she just felt wrong. What is that!!! Meg also got stomach ache at onset, that turned into ulcers. I wonder if it is possible that PANDAS somehow triggers excess acid - and that the acid might actually process food too quickly? Now that she is healthy, food and sleep is still important - but not to the level of crisis management that it was in an exacerbation.

Did a long post on this last night and then lost it . SO frustrating! I am a little OCD about my posts . Control - over time, situation, order, etc is such a common OCD trait. I like the monkey brain analogy! OCDmom - those are all great points. We try to think of Meg's brain (when having OCD) as being in need of training. Just like a stroke victim needs to teach a different part of their brain to work a leg, an OCD victim can learn to have another part of their brain control the anxiety area. We have also tried keeping track of the time she "wastes" tantruming, but this seems to dial up her anxiety in the moment. We will talk about this part the next day when we recap what happened & what we could all have done differently (an important step that is now a part of our daily lives, even when we have no OCD). But we can't use this as a tool to manage a situation in the moment. We do use "not engaging" as a tool (love that one for my husband as well!). One idea is to invest in a cheap egg timer. Talk about this ahead of time - how for everyone, some things seem to waste time, but they really go by very quickly if we focus, and that then we can get to the fun parts. Use something you hate to do as the example, and use the egg time for yourself as well (to model the behavior). Time a shower, just for fun. I would guess that it is about 5 minutes, plus another 5 minutes to get read after (dry, jammies, brush hair, teeth). In this situation, we would "accomodate" without her knowing it, by having everything organized for her, so that no extra frustration is introduced. More work for you - but worth it. Once we time it once, then we introduce the concept of using the timer to realize that we have plenty of time to get ready. Say that you will not turn on the movie for 20 minutes. Remind him that he has more than double the time he needs, and if he is ready, you'll do tickle time or read a book together in the extra 10 mintues. DONT turn the TV on early - the point is to train his brain in how SHORT the getting ready part is - that even if slow, there is still extra time. So be sure that the getting ready time is at least 10 minutes longer than he really needs. Then use the time in short increments of 5 minutes. Say things at each bell (get a quiet one, not a jarring one) "wonderful, you have only taken 5 minutes and you are already done washing your hair. You are doing great tonight. We should have at least one minute of tickle time". Then if you have more at the end, say "wow, you did even better than I expected, we can read for 3 minutes AND do tickle time!!!" Try to keep this from rushing the child - your voice needs to stay positive the entire time (SO HARD!!!), so keep looking for the positives. If it fails, say things like "wow, you tried so hard tonight. Thank you for working with me as a team. This is like learning to play the piano, no one is great the first day! We'll keep practicing together. Isn't it nice to be done now? Let's go watch our movie." Sometimes this is hard to say when the time together is tough, but it takes a lot of the anxiety out, if they feel you understand and are working with them towards a goal. If this does not work, tell us more about the situation and what is working and what is not, and we'll all try to come up with more ideas. This board has so many experts on OCD now - including you! I'm always learning - and there is always a new way to approach each child. It is a creative experience to learn to parent a child with OCD. And if this is "just an age thing", then tools like this will still help them to mature, and give them tools to deal with frustration - something that helps me as well.

I just cried and laughed at the same time. Hope you survived the night - and that he is ok. But oh, how I can relate. I still start laughing (like a crazy lady on the bus) when I remember some of the things that our dd did during an exacerbation. Congrats on maintaining a sense of humor in a crisis!!!!

Laure - we do ERP therapy, and it does really help. Depending on your daughter's level of anxiety and her style of learning, after PANDAS treatment, you may find that you can do some of the work at home - maybe all of it, depending on her level of need. We called it "courage work" or "brain work" for a long time. The best book to start with, for kids, is "What to do when your brain gets stuck". We also find OCD to be sticky and habit forming for young kids. I think this makes sense - they are looking for reasons why they feel so bad, and ways that they can control what is happening to them. Tie that in with brain inflamation, and you have a bad combo. I'd encourage you to give her every tool you possibly can - and ERP is one of those. I do agree with the moms above - we found that we cannot trick Meg into doing anything. In general, we treat her like a small adult - she is going through so much already, and whether she likes what we are doing for her or not, she needs to trust that we will tell her about each step of the way. If you can spend a few weeks (or longer!)just educating her, without any pressure to attend an actual therapy appt, that might be wise. Read books with her, tell her stories about other children, let her do the workbook with you. I would also find an ERP therapist that will be willing to work with you as the primary coach. You can go see them on your own, and learn how to teach her the tools. She can eventually go with you to hear the "brain doctor teach mom". Our daughter did formal therapy at 8, and she spent most of the time playing with blocks & staring at the floor in the actual sessions. However, she was listening, and would then be more willing to try something with me, when she heard a doctor recommend it. She loved her EPR doc - but we had a few bad experiences before that, with therapists that were really clueless about OCD. Try to find a good one, and do warn your daughter ahead of time, that if a doctor is not talented, you will continue to search for one. When you read the books and talk to a therapist yourself, you'll find that there is an entire language out there that can be used to motivate a child to do therapy. It's an art, and lot of parents have this same challenge. One of the things to think about, is that the actual steps of therapy are so tiny - and the child is in charge of what they do - and they are well rewarded. So the child is brought along slowly, at a pace they can handle. I like to talk to my daughter about how lucky she is that she is so smart. That therapy is easier for kids who can use their brains in amazing ways. We did things like using cotton balls and wood popsicle sticks to show her the gates in her brain that are "stuck open" because of PANDAS. These gates allow panic and OCD to flood into the rooms in your brain, and then they overflow. A little worry is good, so we don't stick our hands on a hot stove. A lot of worry stops us from doing great things that we love. Then we showed her how with "brain work" she can learn to close those gates herself. We talked a good bit about other kinds of brain challenges, and how people can learn to use another side of their brain to spell, or to walk, or even to see! Then we'd say, your work will be a little easier - you just have to train a different part of your brain to close those little gates. I read a book called "Brain Lock" - way to advanced for her, but I did show her a few pictures of the brain and how just using your brain in an effective way, can change what your brain can do. Then we discussed that someone has to teach us how to use our brains in the right way. Basically, you have to make therapy less demoralizing. I like to do this with stories. Eventually, you find the story that appeals to her - and then you start to build on that. I'm sure she thinks going to a therapist is for "wierd kids". Finding the right language for her to learn about ERP is really important. Another example, is that we talk about how we learn to play piano. I remind her that you have to practice everyday, and have a really good teacher. If you just run up to the piano every few days and bang on the keys, you'll never improve. But if you go to lessons and use the music, and practice - then it's amazing what can happen! Our brains are meant to learn new things, and ERP therapy is just one of those useful things. We also found that meeting other kids with OCD was very helpful. For us, we did this at the OCDFoundation's Annual Conference. Knowing that she was really NOT the only kid with this issue was very helpful to her.

We saw a difference in about 3-4 days. We were doing ERP therapy, and suddenly the work was so much easier. It took care of a lot, but not all - but was a big difference, and got even better over time. We use "Attune" Chocolate bars - the only thing we have found that she'll actulaly use - and we can stick in lunch box with an ice pack & still trust her compliance. She LOVES the Chocolate Mint ones. They are a little pricey . I am not sure if they are really better or worse than other products, but we have to go with what our dd will tolerate taste wise. Glad you are already seeing a difference! Don't be shocked by some bad moments - I think their brains get trained to have OCD - and some of it is habit based after a while. So you may see a flair up, but we found if we stayed calm, that they are short lived, and not repetitive. Good luck!

THANK YOU!!!!

Hi all - ok, so have a mom that does not post here - daughter cannot take pills (horse) for Augmentin, she wants a liquid. Doc says not sure what to prescribe, wants advice on this - tells her to ask other moms (well, I appreciate someone listening to all of us - but REALLY!?!?!) Her daughter is about 68 lbs. Can anyone type out the exact description on the bottle, so she can ask for a script? Thanks!

I am going to respond emotionally! So I apologize in advance! And WHATEVER you decide to do, I will completely support you - you have MORE than earned the title of warrior mom. But... I will never forget what you all went through and my candid response is " no way"! Pixie-and you - went through so much to get to where you are today. Maybe after 2 years? Whatever you decide, I know it will take so much courage and I wish you well. I wish there were research based answers for you. So glad pixie is so well. All my best - Susan

Oh, I so related to this! I am so sorry it made the vacation so rough. We had our first normal vacation in 2 years, and every single night, my husband and I would look at each other in amazement. Our memories of vacations are of screaming panic attacks, a drive home for 8 hours where she would not eat anything, and wept and raged. By the time we got home, I needed Valium. It was the worst vacation I could ever imagine. Now that we are on abx, we find that attacks (so far, please let it last) only last about 5-7 days. 3 days of ramp up, give her treatment, 3 days of ramp down, and done. Nothing ever got up above a 4, between ERP tools and ABX (and Motrin!!!) You can ask my best friend, I had panic attacks myself the first 3 times - now it seems like a manageable thing. I still hope for 100%, but the place we are now, is so "ok" and full of joy on 98% of the days - after such darkness, that I can't really complain.

We felt the same way. While I wish we had been diagnosed earlier, our OT was a lifesaver & we learned many ways to help. Oddly, turning Meg upside down could stop a panic attack - so she learned to stand on her head (she wins contests for this now!). Also firm (but gentle) pressure from pillows could stop extreme anxiety if we started it early enough. We learned that Meg could not "see the mid-line when writing, and that she needed a lot of sensory stimulation when sitting - she really still does not sit still well. I wish our OT had known anything about OCD or PANDAS. It would have helped us a lot. OT, ERP and abx are also our lifelines. Oh, and Pred.

Well, I am completely weepy today anyway, but wow. I did not know this poem - and how amazingly applicable to parents & kids with PANDAS. I would be hard pressed to choose between these lines: If you can keep your head when all about you Are losing theirs and blaming it on you; If you can trust yourself when all men doubt you, But make allowance for their doubting too; If you can wait and not be tired by waiting, Thanks for posting this!

Even very low doses of azith do a lot for us. We are currenly considering raising it, but have some other health issues to try to deal with first. I lean towards azith being anti-inflamatory. Our daugher also has a very classic response to Prednisone and Motrin. Does you dd have a good response to anti-inflams? Since you have seen Latimer, you might want to schedule a phone consult to discuss with her. Just as expensive from an appt standpoint, I think, but minus the flights, car, etc. Not 100% sure if she is doing this, but I think so. We are in NC too - Charlotte area.

Have you had her tested for Lupus (first test is simple blood test for ANA levels - check and see if she already had)? It does seem like a Lyme, Strep or Rheumatoid symptom. The only ped Rheum in NC is in Chapel Hill - had awful appt there. I hear the guy down in Emory is good (no clue how he feels about PANDAS) - and he is a Neurologist as well. Might be worth a referral request, as you can drive there.

Does she consistently ask reassurance questions about her worries? If so, that can be the compulsion that u start with. Does ur therapist do ERP therapy? A lot of therapists have trouble doing rep and cbt in kids. We did rep at 3,6,7, etc. Great coping tool, although not a "cure" if pandas -just a great tool to help. Did u see the thread in how cod manifests in kids.

Our daughter has PITAND/PANDAS with a high ANA score (speckled), and a PANDAS range CamK & high Anti-lygan. Negative strep titers. Her specialists read of this information is that an autoimmune/inflamatory process is taking place, that clearly corresponds with severe sudden onset OCD. What the exact cause is, remains a question, but she had enough clues to be treated (successfully, 98%) for infection/inflamation based neuropsychiatric illness. If we ever figure out cause, maybe we can get rid of the last 2%.... But I'll take what we got!

To be frank, however, there are a limited number of doctors that understand and treat PANDAS across the country. It is a tough disease to have on more than one front. Hopefully that will change soon. In the meantime, many of us have found the best solution is to travel to an expert and then ask them to consult back to a local doctor. If you can find a local doctor first that does not know much, but is willing to learn, that is generally best.

wow. Long is right. And quite confusing. I really struggled with those questions - I mean if you actually thought that the treatment for anxiety would be "harmful to your child", then of course, you would feel underconfident in doing the treatment, right? But I don't feel that way - so how the heck do you answer then? I felt like most questions lead you to a pretty specific answer, because it never asked you if you felt the way that the question implied you would feel. Who is the mom here that writes surveys? I think you need to help redesign!

There are quite a few threads about this - even very severe cases find help and hope in treatment for PANDAS and related illnesses (PITAND). Thankfully, this illness does not cause permanent brain damage - so don't feel like because you have not found relief yet, that this means it's not out there. It is. I know how hard it is every day - and no child should have to feel like this for one minute. But as they heal, they forget much of how bad it really was. The one that never quite recovers is the parent! I know it is impossible not to worry - but just wanted to send you some words of faith - that I believe there are answers for all of our kids, and thank God for the doctors that are willing to help us. I would second (or third) the advice above to call Dr. B, and see what he advises. We also find that a dose of Motrin about 30 minutes before bedtime can really help. We did not use melatonin, but have heard wonderful things about it.

I think the main thing is to have a plan in place for a time that he may have another exacerbation. Maybe the next step would be to have an appt with one of the main doctors, specifically for ds5. Did ds5 have any other high levels (dopamine, antilygano, etc) on Cunningham test? Does he currently have any signs or are you thinking preventatively only? If you have a full appt for ds5, you might find the thinking of a major doc would result in preventative steps - or at least a plan of immediate action should you see signs. Our daughter cleared on abx as well - after her early episode (3 yrs old), we had a 3 year remission. The next round, however, was harder to deal with. I'm not entirely sure that we would have kept her on abx for the full 3 years, after "only" a month long 1st illness. In retrospect however, that clearly would have prevented a lot of pain. Every story is a little different. Great news that he cleared so quickly on abx, if I am understanding your story correctly! It must be so amazingly hard to be worried about 2 children with such an illness. You have my complete empathy.

Certainly the spitting could be OCD - my daughter had this in an extreme way - she was spitting germs. However, it could just be a "little boy" who likes to spit & hold onto his best friends . So when I start to get a little panicky - I like to try a behavorial plan to see if I can change the behavior - or if it creates a ton of anxiety and therefore gives me a clue that it might be OCD - or even an involuntary tic. You probably know how to do this, but basically sit down with your son, and ask him about the spitting pretty casually. Then offer to have an ice cream party (with your family) the next night, if he can remember not to spit before and after being in car. Then remind him each time right before it would normally happen. (If you are really martha-stewarty , you can make ice cream cards & hand them to him before each expected time & write "no spit" on each one, just to make it more fun). Another way to do this is to casually offer him a piece of gum right before getting into car, with agreement of no spitting while you have gum. For the genital issue (we have not had that one!!! No boys....), you might try habit reversal - give him something to do with his hands instead of what he is doing. Something that will use both hands. So you might start with a throwing a small soft ball at him and then moving to playing catch for a minute. Or handing him some silly putty & showing him how to use it to copy things. etc, etc If it is OCD, then he will not be distracted, or will evidence anxiety about being interrupted. If a habit, he should move on easily. With habit reversal therapy , you break the habit for very short periods of time at first, and then move up to longer periods, until you reclaim most of the day. For little kids, keeping it off the word "no" or "don't do that" and instead giving them a positive action to do instead, usually works pretty well - although it is a lot of work for mom! Good luck - I am in complete agreement - mom's intuition is usually best. For me, at least, if I can rule out a few things kind of easily, sometimes that helps you see what is urgent quite clearly.