Malke

This reminds me that back in the summer (maybe early PANDAS epsiodes, maybe reactions to pool and sunscreen chemicals, not sure) I used to hold dd in my lap using a pillow over her arms, when she was having her exorcist/out of her mind rages. The pillow gave me better traction, provided deep pressure (calming), and kept me safe from hits and scratches and bites. (lovely, I know, but it sounds like we've all been there) Anyhow, she'd tell me to stop so I would from time to time to see if she could really stop the hitting etc. If not, then used the pillow some more. Usually, after a while she'd be calm enough to be able to sit on my lap with out striking out, and wouldn't want my hands anywhere near her, but being on my lap and rocking (in glider) would help calm her down the rest of the way. Never happened while we were out, though, which makes it tougher as you know. I've also put her on the bed and a pillow on top of her torso, and lain on her too. Sometimes it made her madder, but more often than not, when she'd get up she'd still be mad, but more in control. The deep pressure brought her back to her mind and body a little, I think.

This is great and all so true! I don't have anything to add, really, other than I'm realizing my kid's situation is totally what you described in #4...or maybe #6...I've let things go in the past thinking 'well, it's not as bad as so-and-so...' or listening to others say 'all kids do that.' Thanks for your thoughts. Really helpful.

I received many helpful and detailed responses to a thread I started a few days ago about IEPs and 504s for PANDAS kids. I have learned a lot in a short period of time, lol! Some of that feedback included the suggestion to have a letter from our doctor confirming the PANDAS diagnoses when I go into the initial meeting with the school district. I took that suggestion to heart and drafted a letter for our PANDAS-aware pediatrician to sign using, in part, some wording provided by ma2ar2rm2 . My intent in writing this letter was to use it as a confirmation of the existence of a medical condition. I also wanted it to be an general introduction to the school district about PANDAS and a conversation starter as we work to figure out how best to support my daughter in a school environment. For this reason, I made it as broad as possible, covering the potential for either an IEP or a 504. I just heard from the ped's office that she's accepted the letter as-is (no changes!) and will be putting it on letterhead, signing it and sending me some copies! I thought some of you might find it interesting and/or useful to see what I drafted. Here's the letter: To Whom it May Concern: This letter is to certify that [my child] is currently receiving treatment for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep (PANDAS) and may need some accommodation and/or support due to the psychiatric repercussions of the syndrome. When a child with PANDAS contracts or comes into contact with Strep, their body produces antibodies to the bacteria that attack their brain and cause inflammation. The swelling in their brain can have dramatic short and long term consequences for the child. This is not a communicable disease, but rather the over-reaction of the child’s immune system to the strep bacteria. Once this immune response has begun, the child may experience PANDAS exacerbations from contact with any virus or bacteria. PANDAS symptoms include: •heightened anxiety •obsessive/compulsive behaviors •age inappropriate behavior including separation anxiety, •personality changes and emotional lability (e.g.,irritability, sudden unexplainable rages, fight or flight behaviors) •tactile/sensory defensiveness •hyperactivity mimicking ADHD and defiance issues mimicking ODD •daytime urinary frequency These symptoms, when they arise, will need accommodation and/or support in the school setting. It is important to note that PANDAS symptoms generally have a ‘saw tooth’ pattern, which means they will remit for months at a time, and then flare when the immune system is challenged by strep or viruses. Common accommodations and supports for PANDAS include, but are not limited to: •Allowing extra time to transition into the school day (arriving early, special supports from school personnel, etc.) •Allowing parents to keep their child home on a day when s/he is having symptoms, as well as exemption from the school’s policy on excessive absences •Taking timed tests in an untimed setting •Understanding and support for anxiety and other issues (warning before a fire drill or other anxiety producing events, extra bathroom breaks, extra time for homework assignments, etc.) Please feel free to contact me with any questions about this disorder. You can also visit the website www.pandasresourcenetwork.org which has good basic information on PANDAS. Sincerely, PANDAS-aware Doctor or Specialist

This is so helpful!! Thank you for taking the time to spell out everything you've done and are currently doing. My daughter is in K now, but we (finally! by ourselves, with no help from the preschool) identified sensory issues when she was at the start of pre-K in the last school year. She could have really, really used all the things you described. It's no wonder I have PTSD around the separation issues...I didn't have any support either and things just got worse and worse. I'm so glad you had those kinds of supports in place for your son at such an early age. I did have the thought this morning, before I read your post, that many of her issues right now are ones that are unresolved from years of undiagnosed sensory issues and really horrible seperation anxiety due to the SPD. I believe, at this point, that the only reason they have surfaced again in the last few months are: a. Because she was snowballing into a major PANDAS episode (totally understandable) ...and then, as the abx and ibuprophen and Enhansa have been clearing the PANDAS symptoms, b. As a learned behavior from recent PANDAS and all those years when we had NO supports in place. Your reply today, and this entire thread, has helped me realize what we need to do next -- as we get supports in place for next year some of it has to include some kind of therapy (either from the SD or out of our pocket) and maybe a more structured, predictable routine for drop off with the school personnelle (sp?). I've felt so helpless over the years about this separation issue that, although I've been extremely effective in other areas, I've just totally dropped the ball -- Until now, that is! Thank you, thank you! Malke

This is really helpful too. The difference with my dd is that I actually think she is happier at home right now (age 5 3/4). Because of sensory issues from birth, she's never really been fully happy or engaged in preschool or Kindergarten. She loves her friends, but social situations really stress her out. I was with her for the first half hour of her morning K class today (as a way to try to mitigate the separation stress) and all she did was yell at the other kids really loudly. Her teacher, who had seen her on Saturday at ballet class said "She was really doing great on Saturday, happy, etc" and I said, yep, the kid in this classroom this morning is not my child. I walked out of there thinking that if it is so stressful for her, why not homeschool for a little while? On her good days we'll be able to do lots of things and she'll be flexible enough that I can get some of my work done as well (I'm self-employed). On the bad days there will be no pressure to go anywhere. I walked out of school this morning thinking, if its such an issue, and I have some flexibility in my life, why not just try it? The only thing is, I think we should finish out the school year and then transition to our new routine during the summer... Thanks again for sharing. I really appreciate it.

This is all brilliant, thanks so much for sharing!! I'll be happy to have my daughter's K teacher read this. Even though she is well meaning and caring, she still insists on telling dd that she is 'healthy inside and out' which is absolutely not the case.

Just a note about stinky BMs...we've never had bacteria BMs here, thank goodness, but we had years of stinky, unformed, messy poops none-the-less. Once we addressed food intolerances (removed gluten, casein and soy), and then added a probiotic later down the road, then the 'output' markedly improved. This is all just in case it helps...I know for sure the OAT can give you the full picture. Only us moms would have a spirited conversation about poop, lol!

Okay, please excuse the graphic descriptions, but in our dd yeasty BMs were light yellow, floating and fluffy (unformed). Before we identified food intolerances (which was combined with yeast issues) her BMs were also unformed, dark, very loose, and stinky. Are you giving a probiotic with the abx? If so, you may want to up the dose (slowly) and watch for improvement. There can sometimes be uncomfortable die-off symptoms if you increase the dose too quickly. We've tried a few different brands and really love Custom Probiotics (you can google them) and make sure you get one that is strep free. Some people also give antifungals, and the least intrusive in my book would be adding biotin (breaks down the yeast's cell walls) and also Grapefruit Seed Extract (GSE) starting with one drop in some grape juice and working up. Both of these things can be found at a health food store. Also, reduce and/or limit 'yeast feeding' foods like lots of juices, soda, fruit, candy, french fries, white rice, chips etc. Even a relatively 'healthy' diet can be high in quick carbs which the yeast thrive on. It's better to have what I call 'slow' foods, especially protein with every meal -- takes longer to digest. A great test for yeast (and also a fabulous picture of what is going on metabolically -- might help explain the stinky poops) is the Organic Acids Test (OAT). We used one from Great Plains Laboratory and it's quite easy -- first morning urine, freeze and send off in the FedEx bag provided. If you don't have a DAN or someone to help you interpret the results, I believe they can provide you with a consultation that goes along with the test cost. (Not 100% sure on this, but I think I'm correct.) Also, with any non-normal BMs it is often helpful to add a digestive enzyme. We use enzymes from Houston Enzymes. I hope this helps. Malke

Thank you everyone SO MUCH for your thoughts and time spent spelling out the issues. I'm sort of overwhelmed at this moment in time. Once the late-January crisis abated with the help of abx and ibuprophen, I think I sort of let down. I was not prepared to have a conversation (without much warning) with the school director yesterday -- when she asked how can we help you, what kinds of things do you do at home that we can do at school too -- I just couldn't even talk clearly. This is not really like me, lol! My lack of a coherent response also made me realize what I still need to learn, so now I feel I'm on a better track. It'll take me a while to process all the good information I've received on this thread. But, I think I'm ready to rally again and make sure that we do a good job forming a plan. We're only four weeks into this thing and still have a long way to go to find out about co-infections and/or lyme. We still don't really know for sure what we're looking at it other than it's PANDAS-like. I'll be happy to have more information, for sure. Anyhow, thanks again. I *really* appreciate it. Malke

I don't know much about it, but I've been reading about the Usman biofilm protocol. Bacteria and viruses in the gut create a protective coating which shields them from antibiotics and other 'enemies' so they are essentially 'hidden' but still free to do their damage. Take a look -- it seems like a very intensive process, but potentially very effective for what you are describing.

Hi -- I looked all over that site and couldn't find the letter. Could it be on a different PANDAS site? Thanks!

Great tip, thanks.

Thanks to everyone who has replied so far. Very, very helpful to get the long view. However, my daughter is five. We haven't really made it to the world of homework and testing (and I'm hoping we will be able to find a private or charter school that is naturally more accommodating) but I just don't know what to write into an IEP or 504 for a future 1st grader with these issues: 1. Emotional lability and low frustration threshold with social situations -- if she's unable to make a clothing choice before school without falling apart, then my choice would to just keep her home, she doesn't have enough resources to make it through school that day. 2. When anxiety peaks (examples from this fall: a field trip, a visit from a fireman, a slide show about some kind of animal that scared her.) 3. Biggest issue -- seperation anxiety. Things were really just fine when we started school in September, but starting in about November (which, when I look back, is when I first see the PANDAS starting) things really got hard. I take her to her clss room in the mornings and it takes me 20 minutes to leave, and usually part of that time is me trying to leave and having her run after me. Her teacher has to make sure dd is highly engaged in something or I can't get out the door. This is on top of a good-bye routine we've been doing for years. I think I will let the school director know that we are willing to have a meeting to start the process, but I would so appreciate any other thoughts about an IEP and 504 for a younger child. Some days I just want to throw in the towel and homeschool, just to take the pressure off both her and me.... Thanks again for the feedback, Malke

Hi Everyone, Just got back from dd's preschool/kindergarten (she's in K) and a talk with the marvelous director. While really trying to be helpful and completely well meaning I don't think she grasps the seriousness of the situation. The purpose of our talk was to find out how they could support us and to encourage us to get an eval from the school district for an IEP or 504 (medical) plan for when dd heads to 1st grade next year. She kept talking about how the woman in our district who does the evaluations is really great and that they'd be able to put a really supportive plan into place for when, for example, dd has a day with low frustration tolerance (outbursts, agressive, name calling, seperation issues). I just kept saying, it's not like a regular behavior issue, it's not psychological or even developmentally based. I just kept saying: "a medical issue that looks behavioral" and "anger, defiance and emotional issues with a medical cause." She kept asking me what the doctors say about managing this condition...I told her that basically no doctor really understands it beyond, maybe, what treatment to try next and even that is still up in the air. I explained the BBB and the auto-antibodies that attack the brain. I said, this is not an excuse but it's a reason. She finally got the picture when I told her that PANDAS kids often end up with IVIG and when I explained the procedure to her her eyes widened and she sort of slumped in her chair. I think that sometimes graphic is better. I also said, if a kid has a broken leg you don't say "come on! get in the race, you can do it!" Nope, you know not to push them to do something they are unable to do. I said, if a kid had a different autoimmune disorder that attacked their blood instead of the brain, then you might be able to set up a regular schedule for school, but as it is right now, I can't predict from day to day whether dd should go to school or not. I don't care if it's easier for the teachers to plan. If she's unable to go to school, I'm not even going to try. Also, a big one for me, if a kid's brain is ADHD/ODD foggy b/c of PANDAS you can't use regular behavior techniques to help them "learn to cope" and be more successful in the classroom. MEDICAL CONDITION. From my experience, when dd is in the middle of an episode, even if it is relatively mild, I can't reason with her. Sometimes I can distract, but if they are having to do it all morning long with her then it's not even worth sending her to school. Soooo...sorry for the rant, but I am wondering what your experiences have been with IEPs or 504's. Since, as I was discussing with the school director, the medical profession (at least in my limited experience) can't really tell you what to expect or how to explain it to others, especially school, what kind of advice can you offer me? Gratefully, Malke

Oh Sarah, it sounds like it all went as well as it possibly could have gone. You are an amazing mom and you made all of that happen with your perseverence, personal energy and rock-solid commitment to your amazing kid. Great work! xxoo Malke

That all sounds very familiar. Once I realized what was going on with dd5 I decided that my strategy with the pediatrician was to: 1. Make my case and make it a good one -- I wrote the doc a letter outlining the classic symptoms of PANDAS and referenced the sites where I got the information (http://www.webpediatrics.com/pandas.html and http://pandasnetwork.org/). We didn't have any clear 'strep events' but in my dd's case, she had about 75% of the symptoms mentioned. After the basic symptom description, I put in *red* how my daughter was exhibiting these symptoms. 2. I told our pediatrician (who had only 'heard' of PANDAS but knew nothing about it) that the only way we could really determine if it was PANDAS or not was to start a trial of abx immediately and if things improved, then we had our answer. If things did not improve, we also had our answer. I also said, you know I am not the kind of person who asks for antibiotics for every little sniffle, but in this case I think it's really important. 3. I asked for 200mg of Azithromycin per day for 10 days. (DD is 42 lbs) Our ped mentioned the normal kind of abx used for 'strep' and the normal length of of the RX but in this case it's not as simple as that and I told her that. We were lucky to find another PANDAS-aware ped an hour away soon after who gave us 3 months more on Zith. We are in a watch and wait state right now while looking for an immunlogist and/or a integrative MD to help us zero in on what exactly is happening. 4. I also started dd on Ibuprophen 1 1/2 tsp twice a day to help with inflammation. It was the only thing I could think of to do while waiting for the doc to get back to me. My pediatrician agreed to start abx and, 28 days later (now), I have a daughter who is in much better shape than she was when we started the abx. So, we have the answer that it is PANDAS-like and we are going forward looking for more specific treatment. She's not 100%, maybe 80%? But so much improved that now I have room to breathe and really start trying to solve this thing. I'm pretty sure IVIG should come later, if other things are not working. Sounds like you may have caught it pretty early, so you may just need to watch and wait on the abx. I've read on this forum that if it is lyme and not PANDAS, then you'll see some die-off the first four or five days on the abx and then things will improve. For us, DD improved within days of starting the abx. I hope this helps. The folks on this forum have helped me a lot in the last month, so you're in the right place. Malke

I know this is Holly's thread, so I apologize, but I appreciate Smarty and Wendy's input on the subject. For us right now I am trying to find someone in both camps (integrative MD and Immunology) to help us. I knew about four months into changing dd's diet last year that I needed more help and support so I looked for a DAN practitioner. However, I also did a tremendous amount of work to educate myself and ask questions so that we could have the best possible results. In the end there is no one but me who has the big picture on dd's health, but I know I can't do it myself. I'm the manager though, and I have to make decisions on the fly sometimes. I have made the choice start Enhansa based on the personal experience of 3 friends who have used it with their kids. These are mamas I trust. I made the choice about colostrum after talking with our holistic nurse practitioner who said you really can't overdo colostrum, so I knew it couldn't hurt and the possible benefits could be very positive. I do agree that I need someone to lean on, it's just that in Indiana those people can be few and far between, and there's no one person who can do it. (So far -- I've just started looking!) The last thing I'll say is that everyone has their own personal opinions/suggestions for which medicine, which supplement, which herb, etc. makes a difference; to counteract the overwhelmed feeling I get when I see a list of other people's supplements and medicines, I have made it a rule to never add anything unless I know what it's for, what kind of improvement or healing I hope to see, or what my goal is for that particular med/supp. I also found the Organic Acids Test to be super helpful in making decisions about what to drop or add and I hope to find other tests that will help focus our PANDAS healing process in a similar way. This kind of focused, deliberate decision making approach has helped me feel safe about relying on my own judgement between visits with the experts. all the best to all of you, Malke

We use melatonin along with magnesium -- both given just before bedtime. I've been doing nutritional healing/bio-med stuff for over a year and have never heard anything against melatonin on any of the forums I am part of. hth, Malke

I don't have any current personal experience to share, only that I am considering a similar approach. I have heard of antivirals like Olive Leaf Extract (OLE) and others like Virastop that have done wonders with OCD/Tic/PANDAS issues. We've been working on dd's gut health for over a year -- so far it seems to be serving her well. A month in with abx and her gut is fine, if not better than before. In terms of going off abx, I'm keeping dd on zith for another couple months, but trying to keep building up her gut health at the same time. I recently added colostrom to our current regimen, got a better probiotic, and started Enhansa. By the time our 3 month Rx for zith is done, I hope dd will be in a stronger place, and then start anti-virals after school is out in May. Have you seen this account of using anti-virals: http://danasview.net/virusrec.htm ? If you do go ahead with this, I'd be really interested in hearing updates on how things go for you. Does your dd have a tic? My dd never had one before the last couple months, which is one of the reasons we realized we were dealing with possible PANDAS. Are you working with anyone or trying to navigate this on your own? What, if any, tests have you already had done? Malke

This is a really fascinating thread and I've been really interested reading everyone's thoughts. Emerson, you've helped me clarify what my approach is even though I'm only four weeks into this with my dd5. We are starting to look for docs to help us track down underlying infections -AND- I am, at the same time, doing everything I can to figure out how to heal the autoimmune component to this PANDAS-like issue. Either way, the body is sick and needs help building back up through proper nutrition, specific supplements, and other healing modalities other than 'medicine'. I think the two can work together quite nicely.

Went today to see a new ped 1hr away who is handling our possible PANDAS. 3 weeks previously she had given us a 3 month Rx for zith and ordered blood tests. Today she looked at dd5 in person, no problems in lungs, ears, nose, throat, etc. All bloodwork came back normal, no EBV, no thyroid issue. We basically knew all that, but now it's confirmed that dd is a healthy sick kid, at least in medical terms. No allergies, no recurrent lung issues, no sinus stuff, no chronic ear infections, 'only' gut issues. So, I asked 'what's next?' and asked about a referral to an immunologist. Ped agreed and nurse called Riley (children's hospital in Indianapolis) and it turns out the only doctor who works with PANDAS kids is a neurologist by the name of Dr. Deborah Sokol. I specifically mentioned to ped I wanted an immunlogist because we are not 100% sure it is PANDAS (no real strep 'event' trigger) and I want to rule out as many other things as possible, including lyme. There are only two pediatric allergy/immunologists at Riley, so I'm assuming neither of them wanted to deal with my daughter. I'm not sure what to do now. Should I call the ped back and say, please call again -- we're not sure what's going on with dd is PANDAS but it clearly has an autoimmune component so immune complex panel looks like the next step? The ped seemed to understand my request, but it seems to have been lost in translation (last appointment on Friday, things running late, ped needed to go, etc.) Also, I'm not sure a neurologist would get me anywhere. I want to know what is or is not going on in dd's blood/immune system. Plus, she can't see us until April. I'm thinking I might just start looking for an integrative MD who can order me the same tests (??) including the Igenex and/or the C protein markers for lyme. Any thoughts would be greatly appreciated, Malke

It will create yeast-dieoff, which is why they suggest you start slowly. We have not yet tried it (starting this weekend) but I have friends who have found great results with it as an anti-inflammatory. Just a thought: I am not a big fan of abx, to say the least, but the support I have been getting the last few days from this forum (even from folks who are pursuing 'alternative' treatments) is that a long-term course of abx is actually quite crucial for kids with PANDAS-like issues. Just yesterday I started my own thread on what tests to do after basic bloodwork, and I mentioned stopping abx after a month. So far, the support is towards staying on them until we've figured out what the 'culprit' is, especially since we have a 3-month Rx already. I think this might be b/c the immune system is so crazy that somehow the abx take some stress off it, leading to a happier, more functional kid while you're trying to track down the underlying issues? Anyone else is free to chime in on this one...I'm still trying to figure it out. Anyhow, as long as my dd is not getting worse and the gut/yeast issues are stable or improving, I'm starting to think I should keep dd on abx for a while longer. Good luck and hope things go well... Malke

Hi Darby, Earlier this month we were in the middle of an ice storm and I was begging the pediatrician to start dd on abx ASAP, and I started ibuprophen the day before we got them just out of sheer desperation. I too saw really good results, and realized then I really needed to focus in on figuring out what to do next. It's been over three weeks now and I still have to give it to her twice a day -- morning and night. I am hoping to reduce it to 1ce a day and phase into something called Enhansa, which is made from curcumin and is a powerful anti-inflammatory (also a yeast fighter, so some extra issues come with using it, but I think it'll be worth it). I'm glad you found something to help with the symptoms. Have you tried to get some abx going? Malke

Sure, no problem. When we were in the thick of the yeast problem last spring and summer, dd's outward signs looked like this: - Yellow, 'fluffy', unformed, floaty poops (sorry to be so graphic, but it's one of the best ways to identify what's going on in the gut) - Silly/giggly/hyper (some kids spin) - Horrible hypoglycemia - Unstable emotions, anxiety, seperation issues Some of this can look a lot like PANDAS. It is sometimes hard to sort out what is yeast and what is something else, so we also had an Organic Acids Test (OAT) done in July through the Great Plains Laboratory (really easy, first morning pee, mail it back in) which gave us a fantastic picture of what was going on in her gut. Not only the yeast, but also markers for neurotransmitters and nutritional issues that told us what to do in terms of healing the damage the yeast had been doing. We are still working with a DAN for the nutritional healing and yeast protocol. Personally, I think getting an OAT is a GREAT way of confirming yeast, especially if there's other things like PANDAS going on that might confuse matters in terms of identifying it through behavior. It totally takes out the guesswork. When we were having a hard time this past December '10 all I could think of by way of explanation was that it was yeast. We did a second OAT in mid-January which confirmed incredible improvement with the yeast issue and everything else, so that's when I knew that something was *really* wrong -- and that's how I came to understand it as PANDAS. Hope this is helpful. Let me know if you have any other questions. I don't know PANDAS all that well, but I am happy to share my experience with a biomed/nutritional approach to healing. Best, Malke