LNN

Malke, As a mom who's been dealing with this for a couple of years, the first thing you need to do is take a breath. I completely understand that this moment, you're in "OMG what is happening - this is a nightmare" mode. We've all been there and we all go back there sometimes, even after we've been dealing with things for a long time. But as crazy as this disease is, you need to remember the survival chant. In the worst of times, silently tell yourself "my child does not have cancer, she does not have a permanent disability, she is very loved." Pandas can be overwhelming - but it isn't the worst that could happen and you will find help here. That's important to remember. The second thing is that you need to realize that as helpful and supportive as this forum can be, it can also get a little nutty. In our quest to find missing pieces, we sometimes try things with alternative medicines, supplements, treatments, and share our ideas. Most of us have gotten to the point that we listen to some ideas and takes others with a grain of salt. At this stage of research and medical experience, definitive answers for our kids are not there yet. We know some things that seem to work but on a forum, you're not getting any child's complete story. Some kids have multiple things going on, some parents share more details than others. So it's impossible to say "do A and B will happen". So we brainstorm, sometimes we post things and then a week later our thinking evolves and we might feel differently. We're also our kids' case managers and often plod along with limited medical support. Finding a supportive, knowledgeable pediatrician is a rare thing and there are only a handful of "experts" - all of whom have their own twist on theories, protocols and bedside manners. As a newcomer, this can make it seem like we're all crazy and "out there." I sort-of kiddingly tell people I can measure how sick my own kids are by checking how often I come to the forum. If the posts strike me as frantic or out there, then I know my kids are doing well. When the posts strike a chord and I check in every hour, I know my kids are tanking. That said, here's my take on your questions - some "locals" have probably contacted you with names of doctors who can help. The first step is finding someone who will support your effort to do a month long trial of antibiotics (often abbreviated as abx). Keep copious notes. Make a list of your top 5-7 symptoms and rate them every day. For example - Aggressiveness = 5 today, sensory issues = 3, need to control things = 7 etc. Personally, I find it easier to rate the previous day rather than the day I'm in - a little perspective helps sum up the whole day instead of reacting to a particular hour. Then chart the month of data. This will help your doctors see "objectively" what you see at home. The second thing I would do is not only focus on learning about Pandas, but also about OCD and behavior therapies (cognitive behavior therapy and Exposure/Response therapy aka CBT and ERP) that can help you better manage things as you work your way through your medical journey. There are several posts on this topic and I'll see if I can find a few posts for you, with recommended reading and strategies. You can also use the "search" button on this forum and search "rages" "ERP" "SPD" "school"...As you learn about behavior therapies, you can work with your child's teacher and share what works and what seems to trigger negative behaviors. Most schools will want an official diagnosis before implementing anything as formal as a 504 plan or IEP. So for now, I'd probably just work with the classroom teacher. Formal accommodations beyond the SPD issues can follow after you've had some time to do an abx trial and work with a doctor. Try not to put too much on your plate at once. Finally, as scared as you are, realize that if it is Pandas, you will get a handle on it in the same way you dealt with the diet and sensory issues. This isn't a death sentence. There are parents here who do get their kids well. My son is doing incredibly well after a very long battle and my daughter, who is just starting to show Pandas signs, has been able to get back to a good place quickly because we now have a supportive network of doctors. We'll do our best to help you get there too.

I've had the same struggle trying to explain this to people. You feel crazy as you try to explain not one but two mis-understood conditions that have made your kids so "invisibly" sick. You know so much in your head that it gets really hard to explain something briefly. But you can give them the analogy of someone who's being treated for cancer getting the flu - how healthy people can get the flu and be fine the following week. But someone who's already fighting a serious illness can be overwhelmed by the same flu. The body can only fight so many wars at a time. So you may not know which illness came first - lyme or strep. But the one-two punch probably overwhelmed your child's immune system and resulted in symptoms that were more serious than what she experienced. I'd leave it at that. The simpler the better.

I'm not a detox expert - but I think of charcoal like a sponge. It's going to soak stuff up indiscriminately. We too give bedtime supplements and yet bedtime and morning are always when DS feels the worst. So if I have to give charcoal, I try to give it at lunchtime (hrs away from bfast and dinner abx) or if it has to be at night, he takes bedtime supplements (which for us is just probiotics) and then we finish the bedtime routine and read for 30 min. Then he takes a charcoal just before lights out. That at least gives other things a little bit of time to run for the hills and maybe survive. The other thing you can try is alpha-lipoic acid (ALA) which is best taken on an empty stomach in the morning but can also be taken any time during the day and with abx. ALA is supposed to stimulate the body's production of glutathione and acts as a detox agent. So maybe ALA and/or other detox supplements in the morning and a charcoal as needed at lunch or, worst case, for a few nights right before bed? Charcoal can be binding, so be careful if you give it for more than a few days at a time... We used to use Culturelle - LLMD switched us to Theralac - 30 Billion CFU daily and if needed, TruFlora 1 pill 2x week for yeast. We see much better results than we did with the Culturelle.

You remind me of when we were facing the yes/no decision on IVIG (and at the time, we never suspected lyme). I had gotten myself so twisted up with worry that I just wanted someone to tell me what to do. If someone had said "listen to your gut" I'd have punched them, because I had no idea what my gut was telling me. I just wanted to do the right thing and I had no idea what that was. I think your decision depends on how the cost of IVIG impacts your family, the support system you have for your family, whether you have other children who might be effected if IVIG were to cause an increase in symptoms, if you have a spouse - are you in agreement on treatment.... I do think if you decide to do IVIG with lyme, you need to be prepared for a longer or more serious "herx" or "turning back the pages" sort of response for possibly many weeks afterward. It may not happen, but I would mentally be prepared and I would read up on detox strategies/supplements. Neither lyme treatment nor IVIG are a walk in the park. Both have drawbacks. Both have benefits. In one breath, I'd be freaked about the long term time bomb IVIG might be and in the next breath, I could make myself think that maybe IVIG would give my son antibodies that might protect him down the road. There's no way to ever know. I tend to agree with Wendy's view that there's no harm in giving a combo abx treatment a try first and then seeing where you're at. I'm sure having your child so debilitated makes it feel like you must do something NOW and you just want to take a nuclear bomb to whatever it is making your child sick. But I think you need to sit down with a pro/con list. After that, wake up on Monday and tell yourself "We're doing IVIG" and do that for 2-3 days. Then on Wednesday, wake up and tell yourself "we're postponing the IVIG decision until we do 3 months of abx combo for lyme" and tell yourself that for 2-3 days. Then next weekend, decide which period of time brought you more peace of mind. Best of luck with this tough decision.

If you lived in New England, I'd tell you to look at lyme/herx. Have you done testing for things other than strep? Lyme, mycoplasma, etc... have you tested ASO/AntiD Nase B titers lately? It would seem "something" is causing the backslide and a reaction to an abx is a clue, even if it's not obvious yet. You can try a charcoal pill once a day, away from abx. It helps my son with lyme symptoms the way mortin did when he was sick with strep. I found it at a local health food store but you might also find it at a local pharmacy/CVS. Try to stick with it for a week. His response over time will tell you a lot. Try to take a breath. It will not always be this way. Believe in your own ability to get to the bottom of this...

No skewering here! Couldn't agree more. My Pandas son would often make his younger sister the target of much of his anger and frustration. I told the therapist it was like asking my daughter to grow up in a house with an alcoholic - she could never be sure of what she would face and tried (impossibly) to morph herself into someone her brother would love. That's a recipe for disaster as she looks for relationships in adulthood - always looking to please someone else. Initially, when she was 3, we explained that her brother was sick and didn't want to be so mean. But in the next breath, her brother would have consequences when he couldn't keep his rage behaviors within set boundaries. Obviously, he wasn't expected to be able to not have a rage at all. But there were parameters. He could not throw anything, he could not break anything. He could not touch his sister or use hurtful words. He could go to his room and punch a pillow or child's punching bag. He could go to his room and scream like a wild animal, or cry and I would rub his back. These things were laid out during times of calm. But if a boundary was crossed, then there was a punishment/consequence - loss of computer time, etc. - administered after things were calm again. My son came to find this reassuring. That even tho he felt out of control, Mom and Dad seemed in control, and that brought the anxiety down a notch. Now that things are better, my son still rags on his sister - we can't change the fact that their personalities clash. But he still gets reprimanded or in some cases, has consequences - for his words. We also have conversations with our daughter to try to reinforce the message that you can't please everyone and sometimes people, even your brother, can be jerks. That we love her exactly as she is and she should be proud of who she is. That she isn't expected to always like her brother. It's far from a perfect solution. I wish every day they were better friends, that I could protect my daughter from any criticism he hurls at her. But we're still a work in progress. I can just do my best.

Also want to add "Tiger, Tiger, Is It True?" by Katie Byron http://www.amazon.com/Tiger-Tiger-True-Questions-Smile-Again/dp/140192560X/ref=sr_1_1?ie=UTF8&qid=1296128736&sr=8-1. It's not ERP specific - more a story for young children on how to do a reality check and not let irrational worries take over.

I'll second Meg's Mom on using ERP to break residual habits, discussing with DD that you're not doing this as punishment, but to free her from the fear monster that's harassing her. Make sure you align yourself with DD as a team, working together against a common enemy. If she sees it as you vs her, her energy will go toward wanting to be with you to keep the bond instead of focusing energy on defeating her anxiety. Mind set is key to success. Also make a note of how each night goes. If it's habit, you should see progress in a fairly short time. If you're still struggling in about the same place a month from now, that "lingering infection" thought you have might need to be investigated. I hear you on not wanting to rock the boat. Life can get so insane that when you get to 95% you think it's selfish to want 100% and maybe you should just be happy with how far you've all come. The thought that being "greedy" could rock the boat and send you backward is enough to make you just hold your breath and leave things alone. But obviously if you're posting, something inside is letting you know this isn't enough for your family. Time to test the waters ...Good luck and try to think positive!

This is the info I was able to find for Dr. Murphy http://health.usf.edu/medicine/psychiatry/faculty/staff_murphy.htm Might be worth a phone call. Also, if you can't find a local ERP therapist, I believe USF has a program that offers therapy via Skype.

I got an alert that this article has just been published, but the link doesn't work. Does anyone have access? Streptococcal Upper Respiratory Tract Infections and Exacerbations of Tic and Obsessive-Compulsive Symptoms: A Prospective Longitudinal Study James F. Leckman, Robert A. King, Donald L. Gilbert, Barbara J. Coffey, Harvey S. Singer, Leon S. Dure, Heidi Grantz, Liliya Katsovich, Haiqun Lin, Paul J. Lombroso, Ivana Kawikova, Dwight R. Johnson, Roger M. Kurlan, Edward L. Kaplan, Journal of the American Academy of Child & Adolescent Psychiatry, 50:2:108-118.e3 (February 2011) http://www.jaacap.com/article/S0890-8567(10)00816-6/abstract

Re: lyme - Western Blot is a type of test - a way of analyzing the data. Quest does a western blot, Igenex does a western blot. But they look for different antibodies (which show up as bands on a western blot analysis). I'm assuming your lyme test was done by a lab in your local area, which probably used the CDC bands. My son was completely negative on a CDC western blot, but he has lyme and tested positive on band 31, 34, 39 for Igenex (two of these are not on the CDC WB and therefore didn't show up on his first lyme test). Not trying to stir up the lyme debate, not saying your child has lyme. Only alerting you to the fact that a different lab (Igenex or other lyme specialty lab) could give you a different result because they look at different markers. Just something to discuss with Dr B when you see him.

ERP (Exposure/Response Prevention or Exposure/Ritual Prevention) is a sub-set of Cognitive Behavior Therapy. It's the process of breaking a fear down into manageable steps. Instead of tackling a whole flight of stairs, you focus on just moving up one step. Then tomorrow you focus on taking the next step. Climbing one stair may be doable, even when the thought of climbing the whole flight of stairs is overwhelming. You also focus on one fear at a time. So if your child has a contamination fear and a need to hoard, you don't focus on all both at the same time. You might allow all other rituals and only focus on hand washing. Maybe you only have a goal of only washing hands 24 times that day instead of 25. Then once they celebrate their ability to tell OCD no, even once, you can build confidence that they can do it a second time tomorrow (or next the next day). So for a medication fear, maybe you start with a chewable baby aspirin and have your daughter hold it in her hand. The next day, maybe she works on touching it to her lips. After she accomplishes that (and you celebrate it like she just won the Nobel peace prize), she works on being able to lick the aspirin. Then maybe put it in her mouth then spit it out. Then chew it but still spit it out..until she works up to swallowing it. Then she does this successfully for a period of time, then you work up to other meds. I highly recommend reading "What to Do When Your Brain Gets Stuck" with your daughter. It will give you both a common vocabulary and understanding. When a Pandas child is really sick, this is a very hard thing to do and will likely have a lot of failures sprinkled in with a few successes. It's like training for a marathon. It needs to be an every day thing with a commitment and understanding that it's a long term therapy. It may take time before you see results. But IMO it's essential to being able to control this disease over the long haul and it gives important life tools even when OCD is in remission. You mentioned seeing Dr Murphy for your son. Is that a possibility for your daughter? It may help to work with a doctor who knows your family history and has been willing to help you with local doctors. She is also an advocate for ERP and may be able to help in that regard as well.

Other members have given some good ideas for you to try. I would also add that in addition to what you describe as a fear of mistakes (an OCD symptom), some kids also have temporary impairment in their executive functioning and ability to organize their thoughts. This "real" hurdle can compound the "psychological" fear of making a mistake. When you go to grade the paper, any correction or criticism runs the risk of reinforcing these fears. Likewise, any input the parent(s) give can influence the child's perceptions and fears. I think it's great that you're trying to educate yourself and help this student. But you will need an understanding of ERP (Exposure/Ritual Prevention - also known as Exposure/Response Prevention) and how to break an OCD fear into small steps. I would also encourage you to get the parents on board with this, as it really requires a team, with the messages and tools being practiced all the time, at school and at home. I recommend "Talking Back to OCD" by John March and "What To Do When Your Brain Gets Stuck" which is for a younger crowd but will give you a good overview in a quick read. It is also important that a Pandas child be supported by proper medical care, such as long term antibiotics. It sounds like a 504 or IEP would be very helpful, but even an unofficial team of teachers, family and doctors could do much of the same things. The key is emotional support along with medical and OCD therapy tools. In the short term, you may want to focus more on comprehension and oral communication of ideas. During the peak of an exacerbation, there's only so much a Pandas kid can handle. Sometimes, expectations must be very fluid and adjusted day by day. Try to celebrate even the smallest accomplishments (sometimes simply showing up is a huge feat). The other major contribution you can make is to advocate for this child among his other teachers. You "speak the language" of teachers and may be in a great position to bridge the gap that's so often present between parents and educators (particularly administrators). Your student is very lucky to have you on his team!

I'm sorry you're having to go thru this again. It's exhausting. It seems you have a few tasks ahead of you. First, you need to uncover why she's still in an episode after so long. It would seem there's still a chronic infection by something, somewhere. Until that's treated, it's going to be an uphill battle. Second, I would search old threads on rages and CBT (cognitive behavior therapy) and get a few books on CBT and ERP. As you say, you cannot reason with someone else's unreasonable fear, but there are very effective steps you can take to help someone overcome their own unreasonable fears. That's ERP. Third, I can't think of any treatment that might be ahead for you that doesn't involve medications. So I think you need to help your daughter overcome her fear of medications (ERP would be a useful tool here as well). We used tic tacs to help my kids how to swallow pills (no harm done when they got spit back out, unlike precious antibiotics). If it's a fear that a medication might poison her or make her sick, then others may have some ideas on that. Maybe start with something like a chewable baby aspirin - something you can practice over and over and afford to have spit out again and again. Eventually "proving" to her that nothing bad happens when she takes medicine. But I think somehow, this is something you're going to have to help her with, not just for Pandas but for any other illness she may encounter. Maybe if you can explain what drives her fear of medications, others can offer ideas...

We had a positive experience with pex - very effective. Yes, expensive, but with insurance coverage, no more expensive for us than IVIG (we've done both). The process was uneventful, the staff and PICU setup was awesome. The worst part was when they removed the adhesive bandage that held the central line in place (use LOTS of adhesive remover and it won't be an issue - we should've asked for a whole box of remover wipes and not settled for the 10 1x1 squares we were given). But overall, a very good experience. Like you, we had a horrible experience with IVIG. But that's probably because we had undiagnosed lyme (which may be why the pex results didn't hold and we turned to IVIG). So I agree - make sure you screen for underlying infections first. Then, if you are "just" Pandas (ha - like it's "just" a heart attack), I think pex can offer very positive benefits. As for airports - we drove. It was 10 hrs, but in a nonsensical way, I felt more in control bringing a canister of clorox wipes into McDs and rest stops than I would've if we had flown. If you decide to go ahead with pex, feel free to PM me, or I'm sure any of us, and we'll walk you through the whole process.

I admire those who can successfully home school. The time and commitment and ability to switch hats and do lesson plans and keep up with the grade-level expectations...wow. Personally, my son and I have a different dynamic. We often work well at homework time (tho we did not when he was really sick). But for him, the social skills he practices at school, the abilities of his teachers, the resources he gets from having different teachers work with him on different needs - it's not something I could manage myself, and I'd so beat myself up if he didn't stay on track and I felt it were my fault. So my hats off to all who manage it! My daughter (with something brewing but we don't know what), used to love school. But since New year's, she's been crying and having anxiety attacks about 30 min. before it's time to catch the bus. She says the OCD fairies make her doubt that she'll have fun and she'd rather stay home with me. But once she gets there, she does have fun and is always so proud of herself for conquering her daily fears. So for us, being able to get her on the school bus is our daily ERP challenge and letting her stay home isn't a practical solution, because it would send the message that her fears were somehow valid/real. And she would feel defeated. That she wasn't strong enough to beat the worry fairy. And my fear is that would spread and make it harder for her to keep fighting her other fears. But then, she isn't in a place where her OCD is debilitating. So I'm not saying this is the answer in every case. I think your answer depends on how your daughter views school when she's healthy, how often she gets to a 10 each day, how overwhelming it is and for how long and how flexible the rest of your family situation is. If you think homeschooling would benefit, if you can manage it, if you feel she's getting nothing out of the day while she's in the building, then it may make sense. But if there are portions of the day that she can manage, if she once enjoyed school and has a support network there, then maybe she can attend for certain parts of the day. Maybe the answer isn't an all or nothing approach.

Someone just sent me this link and it looked like a helpful checklist... http://www.spannj.org/BasicRights/appendix_d.htm something to help you review all bases.

My son always responded extremely well to prednisone tapers, which is why I dismissed lyme for a long time. When he was eventually diagnosed with lyme/bartonella, I asked the LLMD how we could've seen such a positive response. His explanation was that if you feel awful, prednisone will bring you relief and make you feel good - temporarily. (in our case, for about 2 months before something would start to slip - but I always assumed it was due to an exposure - never thought it could be lyme) My personal theory is that one or both of these disease caused an autoimmune response that the prednisone halted. But you can tie yourself up in knots trying to decide the chicken/egg questions of if lyme, when, with or without Pandas... I think you can have both - a chronic infection, along with periodic strep infections, an overwhelmed immune system that tips into autoimmunity. But it's speculation on my part. What you do know is that you have xyz symptoms and one, probably two diseases, causing them. The good news is that a combo of antibiotics is a good way to treat both conditions. My personal experience is that our LLMD has been able to change DS's abx into a combo that has been really really effective and he has experience managing the body's detox process to minimize herxes and side effects. So in that regard, my son has benefitted with an LLMD. Get rid of the lyme and see what you have left. If any Pandas vulnerability remains, go back to the Pandas doctors (don't burn bridges in the process - I don't mean to discount what they bring to the puzzle - just that I'd go to the expert for lyme and then the expert for Pandas). Have hope. You have key puzzle pieces now. Lyme treatment for us has not been difficult - nothing compared to what we've been through beforehand.

I have a sample (stolen from Buster's ideas) that I use for both kids. PM me with your emails if you'd like it. I can't figure out how to attach a file to this post.

You probably won't agree with me right now. But IMO breaking down in front of your daughter and husband gave them a gift. You showed your daughter that no one - not even super mom - is always in control of her emotions. Imagine the pressure on a kid who rages if they never get to see their own parents lose control once in a while. You gave her "permission" to be less than perfect. You showed her that everyone "fails". And you allowed your husband to be there for you, to comfort you. You allowed him to be the strong one and allowed him to be needed, to have a role that he could play well, even if it was for too short of a time tonight. So hats off to you! Belly up to the bar with the rest of us mortals and celebrate the fact that you care so much, love so deeply, that dang it, you bawled because losing what you love most hurts so unbearably. And you may have saved yourself from a nervous breakdown in the process

My Pandas son developed what looked like tardive dyskenesia within a day of starting Tamiflu. We discontinued after 1 dose and symptoms resolved within a day. We're the only ones I know of who've had an adverse reaction. So I don't want to add to your already frazzled nerves. For us, symptoms did resolve quickly upon discontinuing (DS has also had adverse reactions with Zicam). I believe others have used it with positive results. So you can always start it and just watch closely. (bear in mind we may have had lyme in the mix when this happened - that may have been a factor - don't know).

You can PM Kimballot on the Pandas forum. She's a New Yorker and did Igenex. You might ask her experiences. I know she had to do things differently because of the NY residency.

which abx are you using? has he had this abx before? has he ever had complaints of pain in these areas (even if sports related)? the stomach pain could be abx-related. but the muscle pain stands out. I'm sure you've thought about motrin. what do you think of doing a trial of charcoal? in a herx/detox situation, it works for DS as well and as quickly as motrin did. might give you some clues if it does help. sending you support as best I can...let me know if you need anything.

Are you still giving prednisone or did you stop that? Trying to understand if the pain came back yesterday with just abx or abx plus prednisone.

I don't know if what my son experienced would be called catatonia, but at his worst, he would "freeze" for about 3 seconds at a time - in mid-stride, in mid-sentence. It was like someone hit the pause button. Then he would resume exactly where he left off. I asked if he remembered it happening and he seemed to have only vague awareness. He said he felt it coming on, like a sneeze, but couldn't do anything about it. Because it happened so randomly, no doctor ever saw it happen and we have no videos of it. Once he went on daily abx and had a T&A, this symptom never came back. But a year later, when I gave Zicam for a cold, his "piano playing" fingers came back along with chorea-like movements. We never tested zinc levels, but in our case, the extra zinc made things worse. It stopped once we stopped the Zicam. (my son has since been diagnosed with lyme/bartonella - but I can't say whether Pandas, lyme or the combo caused the freezing). Is it possible that the myco p infection may still be there? I know others have used different antibiotics for this (biaxin? omnicef?). It might be worth re-testing or re-treating. We waited 9 weeks after HD IVIG to do an Igenex test. I'd recommend testing C3D immune complexes at the same time, as high complexes can give a false negative, so you want to know if that's a factor in interpreting the results. In the meantime, you may want to set up an appt with a Lyme Literate MD (LLMD). I know DANs do a lot of exploration, but if you're still no better off than you were, then I think you unfortunately have to keep digging. Even tho you have to wait to do lyme testing, it takes time to get an appt. You can have an initial consult and get the clinical picture and may be able to do a trial of different abx combos without having blood test results in hand. An LLMD might be willing to try combos of abx that haven't been tried before - things that are better for myco and/or lyme/bartonella. I'm not saying this is a lyme-related thing. Only that you've tried so many other things and have gone thru such a grueling journey without finding the key. I think it might make sense for this to be your next area of exploration. You can go to www.ilads.org to get a list of 3 doctors in your general area (go to the contact us section and send them an email - they respond pretty quickly). I know you must be exhausted (not to mention broke). Our thoughts are with you and we'll all try to support you as best we can.