dcmom

oh, and btw- neither of my girls had ivig, fwiw.

I am so sorry you are not seeing improvement at this point. Both of my kids were fully recovered by one month. I don't know your son's history, but I am going to throw something out there. Are you dealing with ocd? Was he in a complete exacerbation when he had pex? Twice we have seen my older daughter recover from exacerbations, (recover from physical manifestations, odd and complete panic) yet have seen her ocd remain. What we found is that if we did therapy at that point, it worked! and was relatively easy, whereas prior to treatment it was next to impossible. If you are dealing with ocd (only), have you tried therapy since the pex?

In NJ, our labs/ hospitals only do a FULL lyme panel if the initial WB screen comes up positive. That is their policy, and it is next to possible to get them to do anything different.

Mama2- I agree with smarty- go with your gut on this. Sure it could be loss of appetite due to EBV, but it could also be restrictive eating due to ocd, due to pandas, due to EBV. Both of my kids have had eating issue with pandas. One exacerbation, my oldest restricted her eating pretty severely due to fear of vomiting. My other daughter has restrictive eating as a low level, early warning sign of an exacerbation (she is a picky eater to start with, and when pandas hits, nothing is palatable to her, she wants to eat, but has trouble finding stuff she will eat.) Both have lost weight at times due to pandas. For us it has been scary, because it was the first and only symptom that we felt put them in real, physical danger. I don't know what the answer is for you. For us, it has been pandas treatment: steroids and/or pex has immediately wiped out these issues. We did not have to approach it with any type of psych help. All times we have dealt with it, however, while waiting on treatment, we employed some minor strategies to get the calories in. Hope something here helps... I tried to keep healthy, but palatable, snacks on a table in the kitchen at all times. (cheese and crackers, fruit, dried fruit, nuts, mini muffins) We fed them many meals in front of a movie on the tv (we usually do not allow this). I would make up a tray- again a meal of small bites seemed to go better- mini sandwiches, fruit, milkshakes or smoothies, veggies and dip, cheese, etc. It seemed to work better NOT to ask what they wanted for a meal, but rather make a tray with lots of variety, of mini size portions. We allowed unlimited snacking- at that point, we were down to a calorie is a calorie, and figured when the pandas was under control we could clean up the diet (which we did, and they never really went overboard on snacking, it was usually more a timing issue). Ice cream was a big one, so were milkshakes and fruit smoothies. Now they sell a lot of frozen greek yogurt, which although I know is high in sugar (like any icecream) at least it has a good amt of protein. I think one way you can really tell whether is is normal loss of appetite vs ocd/ pandas- is his reaction. If you put a meal in front of him and gently push him to eat, does he seem to over react, or no. When something is ocd, for my kids, a big clue is their reaction to it- it is out of proportion. So- when you lose your appetite due to illness, you might feel I want to eat, I just have no appetite. But someone with ocd will not be calm about it, they will start getting emotional if they feel they are being pushed into a fear. (at least this is it with my kids) Also we have noticed with ocd, the "excuses" change, according to what they think we will accept " I am not hungry now. I don't like that. I am tired of that meal. It is because I am sick that I have no appetite. I am to tired to eat. Hope this helps.

pandas philly- I have a lot of thoughts for you, and will respond via pm, hopefully tomorrow, if we have power. I have two daughters who both have had pex at Gtown, and gone through treatment at USF. The are doing great. We have never done ivig- I personally don't think it is necessary (unless there are some definite immune deficiencies). My motto after pex is- do not rock the boat. We found after pex, a healthy, normal lifestyle was all that was needed, along with steroids in the cabinet to give immediately if a flare up happens. I can give you lots of info on what to expect at gtown and usf (usf is not a clinic setting). If you think of it, pm me your email address and I will email you. I live in NJ now. Eileen

Hi Kathy- I am going to contradict mama2alex a little bit- just to give you another point of view. I have two kids, both contracted pandas at the same time- one was 5 1/2, the other 8 1/2. The older one had strep two years prior- with no incident. I do think that PANDAS can hit at any time, including adulthood. The reality is that the "pediatric" portion of pandas was imposed on the diagnoses for research purposes, and not because it was ever looked into that older kids, or adults, could get this disorder. I think in many ways it is easier to really SEE the pandas in someone older. Gosh, at 19 your son's personality was set, you KNEW him, and I am guessing from your post that things changed fairly dramatically. It was VERY easy for us to see the change in both of our girls, but we missed subtle changes in our little one (mostly academic, reading, separation anxiety)- while the older one, we KNEW everything that was different and that it was NOT a stage of development. If I saw this type of change in anyone, young or old, I would want to look at pandas. The treatment of pandas is RELATIVELY benign in comparison to the NOT treatment of pandas. We decided at the onset of this disorder that we would treat aggressively. Watching both of my kids lose themselves, I mean lose the joy in being a child, and losing some of their best qualities, overnight was horrible. We decided we would take whatever measures we could to make sure they had the best shot at a normal life. Both of my kids had plasma pheresis, did two years of daily zithromax, have done IV steroids twice, and have done oral steroid bursts several times, over the last 3.5 years. We try our hardest to treat quickly and aggressively. So far, it is working. They are happy and healthy. The go to school, do well academically and socially, and have VERY little or no ocd or anxiety MOST of the time. When they get sick (a cold, fever, etc), they flare up, we treat them, and they get better. I have ALWAYS wondered why we cannot use immunosuppressive drugs. It would certainly make sense. My kids have been through TONS of testing, and everything (except the cunningham test) is typically negative. I would suggest (and imagine your doc has done) a reasonable battery of tests to rule out things. However, if your son had an almost overnight change- that really points toward pandas. I do think that a methodical approach to using the interventions is a good idea- at some point you need to figure out what works the best, and is the most benign. Hopefully your doc could figure this out- IMHO I would start with a month of zithromax, then I might proceed to a month of steroids, then if needed, I would proceed to the IVIG, and possible a month later proceed to the immunosuppressants. HOWEVER-if life is unbearable right now- I say throw everything at it, and figure it out later. It is a lot easier to deal with pandas in a little child, than an adult. I feel for you- must be very hard to have a young adult suffering with this disorder. There are others- your son is not the only one. Hang in there- things will get better.

Laure- I am in your corner! We are only treating pandas (not lyme), but have not done ivig. It certainly is a life saver for many, but makes others worse. I think you are really smart to try different interventions in a slow, methodical, one-new-thing-at-a-time way, only way to know what is working- and hang in there, something will.

Lisa, what are his current symptoms? If it is mostly ocd, I would urge you to consider USF asap. My daughter had an exacerbation almost two years ago. We immediately did IV steroids, and this stopped the exacerbation (depression, overwhelming anxiety, not sleeping, separation anxiety, odd, etc), but the ocd hung on. I could tell she was well: she was well physically, and her personality was so much back- but she was crippled with one or two ocd issues that kept her fairly housebound and out of school. We tried local therapy for 6 mos. After not getting anywhere, we went to usf. After 3 weeks there (totally budget friendly- pm me for info) she was literally over the ocd and 100%. In addition I learned SO much about ocd and its therapy. The only regret is that we waited 6 mos.

Hi Lisa- Your post breaks my heart. I know how difficult dealing with pandas (ocd) is. I am just throwing some ideas at you here: We have never had IVIG. I know some that see Dr B and have had multiple IVIG's with great success, and others with not as much success. I find it personally surprising that he continues with IVIG in the face of a lack of obvious improvement. I am sure he has his own theories. But, I do know that Dr K (and Dr Swedo at the NIH) are not necessarily in favor of multiple IVIG's. They believe in one high dose IVIG, and then time for healing- only giving a second after a long period of time, or with a new exacerbation. Surely- all docs are hypothesizing at this point, but I guess what I am saying is maybe you should try a different doc. If I were in your place (has there been NO improvement at all, ever?) I might stop everything for a few weeks. See what your real baseline is, and then start adding from there. Maybe some of the meds/ supplements he is on is causing some issues. Maybe the multiple ivig's were stirring up the immune system too much. The only things that have truly helped my kids are immune modulating treatments: steroids and pex. We have not done IVIG- so I cannot comment on that. I do know a doc local to me that has prescribed one 5 day steroid burst per month, for a year, for a pandas child- and this is working miracles. The other thought I have had recently is what about a prescription anti inflammatory (like for JRA). I think it would be helpful for you to find a doc that could really think out of the box. The other thing is- if ocd (and even adhd) is a big problem, you might want to consider an intensive therapy program (like USF). I think for so many kids this could be a huge part of healing. Helped us SO much!!!

Hayles- I am not sure I am following all of your post, but I can hear the panic in this one. I wanted to comment: First- there is no way to tell, after the fact, that your son did not have strep/scarlet fever. I am sure what they did was run strep titers. The fact is that about 30% of the normal population to not mount titers to strep, so negative titers are meaningless. This is a point that many docs seem to not know. There is a study on this, I believe it is pinned to the top of the pandas threads. Second- if you are concerned about your son't immune system, I agree with Kim- you need to see an immunologist. Third- This is sometimes hard to hear- but it is VERY difficult (if not impossible) to successfully manage PANDAS with a GP or a pediatrician. You really need to have a pandas specialist on board. From my experience, the longer you delay in seeing a pandas specialist, the more circles you will be going in, the more money you will waste, and the worse your child will get. I hate to put it like that- but I was happy for the cold, hard, truth when we were first diagnosed. Have you stated where you live? Maybe we can all help with recommendations. Most of us travel for our docs, some across the country, some travel internationally. Last- PANDAS can have many, many symptoms. While I think it is wise to fully evaluate a symptom on face value- in other words do an MRI for the headaches- for us 10 times out of 10 a questionable symptom is ALWAYS pandas, and goes away with appropriate and aggressive pandas treatments. For pandas- your doc should do a battery of tests to rule out infections: viral and bacterial (EBV, mycoplasma, etc, I assume a throat culture for strep has been done). Any infections found should be treated. If no infection found, most pandas docs will still prescribe one to two months (minimum of antibiotic). After that many move to month long steroid courses if improvement is not sufficient. After that IVIG and plasma pheresis are considered. Good luck!

Unfortunately, it seems like dosing needs to be tailored for each child. I would not consider lessening antibiotics until your child is stable for a month plus, at 90 to 95%. At that point, I would wean down slowly to your desired prophylactic dose. Start by dosing every other day for two weeks, then lowering to 3x per week for two weeks, etc. You should expect to see a minor bump in symptoms when lowering the dose, but as long as that subsides and you are back to your 90-95% within a couple of weeks, I would continue. My two pandas kids have been off of antibiotics (except during flare ups) for 1.5 years. However, they were on daily treatment dose antibiotics for two years. Good luck. Just remember - go slow- expect some minor bumps- and maybe even use a little advil the first few days of weaning down.

nickelmama- The weekend my dd went to stay with my mom (late august), my mom came down with a bunch in her mouth and on her lips, and felt a bit out of sorts. As soon as my dd came home, I could see an appearance of some pandas stuff. Since, dd has not been 100%. She hasn't been in full blown pandas, but a def appearance of some issues. We have done two rounds of antibiotics and regular advil dosing, which help- but haven't sustained improvement. We saw Dr T last week. He suggested testing for viruses (cocksackie being one). I think I would try for an antiviral, and do a week of regular advil dosing- pretty benign treatment that may make big improvement.

I think quality ERP therapists are few and far between We had a GREAT experience at USF. It is 3 weeks, outpatient, and covered by insurance. When there, they did mention to me Penn Behavioral Health and the University of Pennsylvania. Looks great- but I think they don't take insurance, so it would be quite pricey. Wish I could help more.

gracie- So sorry you have to be here. I have two daughters diagnosed with pandas 3.5 years ago. They are doing wonderfully now (and have been for a while), but I feel we had to learn some things the hard way. I will give you my best advice, take what you want from it It is very unlikely to be able to treat this disorder with your pediatrician. I mean, they have at their disposal what your dd needs, but it is unlikely they will take the time needed to UNDERSTAND PANDAS, or be willing to stick their neck out to treat it. This really sucks, but it is the reality. What this means is you will need to spend lots of $$ and time, to travel out of state (probably) for a doc who "gets it". The sooner you do this, the less your child will (hopefully) suffer. IMHO this is how a new pandas patient should be treated: There should be a somewhat extensive battery of bloodwork done to get a baseline. Your dd had strep, so hopefully she will be a relatively straightforward case. I would be prepared that some bloodwork will be out of whack, don't panic, watch it over time. The child should be given a full strength prescription for an antibiotic. At the end of 30 days, if there is not continued improvement, the abx should be switched. I would give it another two weeks, and if not enough improvement is seen, the child should have a month long, tapering steroid course. (PANDAS is thought to be autoimmune- for my kids, they seem to clear infection normally, however the infection stirs up the immune system, causing the autoantibodies, which we usually need to shut down with steroids, or the like). If the steroids and antibiotics don't give sustained results the child should immediately be a candidate for IVIG or PEX. (my daughters both had plasma pheresis for pandas, it was a miracle for both of them- not a cure, but brought them almost immediately back to 100%). You need a doctor who is FLEXIBLE and PRO ACTIVE, and willing to take this journey with you. There are a handful of great pandas docs out there, however IMHO not all have these characteristics- if you want to discuss specific docs in detail, please pm me. The lessons I have learned: be proactive, JUMP on a flare up, however, when seeing improvement (measure it by the week) do not rock the boat, give it time. Get a really qualified therapist who uses ERP therapy for OCD on your team. Focus on managing the heck out of this disorder, and your dd will be okay. The first year is the hardest- you will then learn what works as far as medical treatment, therapy and parenting AND hopefully their immune system will calm down, and flares will be less frequent and milder. You will find a whole group of wonderful, smart parents here who have seen it all- use this board as a resource and daily comfort. Hang in there!

Hi all- This is a story of a doc willing to think out of the box. I happened upon this story over a year ago- it was in the newspaper- I saw it online. I actually tried to see Dr Najjar- but he (typically) does not treat peds. I do know a family of a young adult who see him, and they have been very happy. BTW, not all of the associates in his practice are pandas savvy ( I am restraining myself here). I do know the woman was treated with pex (and possibly IVIG) along with longer term steroids. I am looking forward to reading the book. I have to say as of late, I am really becoming more frustrated (I guess with the BCH story, along with my own personal fears). This is NOT rocket science. We are at a place where we know (for the majority of cases) how to treat this pretty successfully- yet because of the sad state of our medical care system- kids suffer. My kids are doing well now- but they have suffered a lot, and I live in fear that pandas will strike again and hard. If I could prescribe what they needed- and could get it- I have every confidence they would not have to ever suffer again. Really just have to block it out, because it can drive me crazy

Do you see a pandas doc? I have found they are the only ones who understand. We are able to have antibiotics on hand for a flare up. If you cannot get antibiotics, I would def still do the advil. I would consider oil of oregano in absence of abs.

We have developed a protocol for flares for my kids. There is no OFFICIAL protocol. If we see a flare up, asap we give them a course of full strength antibiotics, plus 5 days of regular advil dosing (3x/day). We then wean that down for another 5 days of prophylactic antibiotics and one advil per day. We also make sure they get a full night's sleep (melatonin as needed), eat well, and we don't overschedule (if possible). It sometimes makes sense to have them swabbed for strep- we used to do that all of the time, now much less. If they complain at all of stomachaches, headaches or fatigue- I would get them swabbed. Hope this helps. Hope the flare passes soon.

agree with eamom- no ibuprofen with steroids. Is it possible the ocd is not necessarily getting worse, but her reaction to it is worse because of the irritability the steroids create? Might make me want to stay the course... clinda and steroids. See if things calm down when you start tapering. What is the steroid dose? My little one has a really hard time above 30 mg/ day orally (she is 50 lbs)- but we still do it. We just hang on for those few days (sometimes I start tapering earlier), and then we start to see real gains on the lower dose. Clinda is treatment for strep carriers, we used it with both girls successfully when they contracted strep while on augmentin and zithromax.

Hi Mommd- I always have thoughts Have you started the steroids yet? I will assume you have not, for my answer, if you have my answer would be different. I am slightly surprised Dr L wanted to change your protocol, since it was working- however, I applaud any doc for being more aggressive with pandas. That said, our philosophy consists a lot of "do not rock the boat" and "follow what works". So in other words, if your daughter was back to 90% on a cephalosporin protocol- my opinion would be to stay on that protocol as long as the results are 90%. I am not sure why clinda would mess with her improvement, but if I were you, I would probably go back to the cephalosporin. I would let Dr L know things looked worse on the clinda, and you were trying a return to the ceph. If at that point, your daughter starts returning to 90%- I WOULD DO NOTHING. For us, 90% is a pretty good place, with time, healthy living and maybe some therapy, my kids can get to 100%. Now, I will tell you that we have seen some things be a coincidence. In other words, right now it seems the clinda is causal to your dd's flare up, and it might be, but also be mentally prepared for the fact that that was coincidence, and she may continue to flare on the other protocol. IMHO, I would go back to the cephalosporin protocol (I would probably immediately throw regular advil dosing for 5 days in to help settle things) for a week, and at the end of the week I would assess where you are. At that point you have to kind of go with your gut. If things are trending positively, stay the course. If not, think about starting the clinda in a few days again, and doing the whole course. If you have started the steroids, I think I would stay the course. In our experience with steriods, they can cause difficulty sleeping and irritibility as a side effect. For someone with ocd, this makes things WAY worse, until the ocd starts decreasing. If you are on a taper, you should see the side effects (and therefore the apparent worsening of ocd) ease of as you taper down. Hope this helps!!

Ptcgirl- I feel your pain. This backslide sucks for your dd, esp after all of the hard work she put in. The thing to hang on to is that she WAS better, you got her there once, you will do it again. (For now) I feel my kids are a success story. Things have been going really, really well for them for the last year plus. However, they are not cured, for sure we see blips. I heard Dr T's water main break to steroid analogy- and although I love the man, I did not love that analogy. For us, if we see a leaky faucet, we can be SURE a water main break is looming, so we do the only thing we can to stop it. And for us it has so far. We need to do these steroids a few times a year, for each child, but beyond that they need nothing- no meds, no supplements. So, frankly, I feel pretty good about it. IMHO steroids are a very effective method to "manage" pandas, I think they are underused, and also not used creatively enough. One size burst does not fit all. Lyme is a tough one. I think I would do the blood culture test. Be sure you know what you are dealing with. I am not disputing chronic lyme whatsoever, but think in addition to a chronic infection, there is a possibility of developed autoimmunity that lasts after the infection (I think Dr Fallon at Columbia is looking at this). You can't really treat effectively unless you know with absolute certain whether you are treating infection or autoimmunity. Add pandas on top, and for sure, you have got a mess. Once you know what you are exactly dealing with- you can hit it HARD. I have seen both of my pandas kids have a flare up with no known cause- so it does happen. You are not at square one, you and your dd have learned a lot- and once the crisis passes- she will recover faster. Both of my kids had a major exacerbation at onset, done really well after treatment, got back to 100%, only to backslide. But now things are good, and have been stable for a while. I keep waiting for the other shoe to drop, but, having "recovered" them twice, I feel slightly more confident we can handle what comes our way. I do think as our kids get older, things will calm significantly. I don't know if they will ever be completely free of pandas, I do think they might have a bit of a cross to bear (mild anxiety, etc)- but who doesn't. We try to work on perspective a lot in our house. Pandas sucks, but most people you will meet have challenges: divorced parents, diabetes, allergies, sick sibling, poverty, etc. It helps all of us to be exposed to these issues, and remember we are not alone in our suffering. In the midst of pandas- it feels like the worst thing in the world (to see your child suffer so)- but our kids get well, we will still have them and they will have us. And sometimes when we discuss these other issues, my dd says she would rather have pandas than have the others. So they will be ok. Hope this rambling post makes some sense

Both houses are walkable. We were trying to do the whole thing on a budget, so we did not have a car. We rented a car on weekends to take trips.

We stayed at the larger, busier house- which we loved. Younger daughter made a few scenes Staff was WONDERFUL and always told me if they could help in any way..... USF will be your rock in telling you how to handle these issues as well... You are NOT alone when you are there.

Thanks for all of the quick replies! It is always so nice to hear from those who have had similar experiences. Christianmom- I looked into power spelling and think I am going to get it and use it for both my dd's. Younger dd has spelling in school, so will use it with her in the summer- with the older one- we will start now!! Nancy- thanks for your insight, and I am weirdly comforted to know you saw the same with your son (no- I am not obsessive, blaming everything on pandas). I did some research on dysgraphia and it does include spelling issues. It also includes handwriting (and while my dd's do fine in that dept, at one point they both had the best handwriting in the class, to now average handwriting at best). The funny thing is, my dd IS an auditory learner- BUT she has not had formal "spelling" since third grade- so no spelling training since her spelling took the hit. She CAN memorize spelling ( in Spanish, let's say, for a quiz)- but it is like her base is gone, all of those years of spelling were wiped out. I am not sure if she sounds it out- I guess so. They don't have "spelling"- their English class (double period) is run much more like what I think of as a high school course- reading novels, interpreting, writing essays, etc. plus grammar. I agree that spelling is petty, and her last year teacher told me the same- that spelling is not a mark of intelligence or academic aptitude whatsoever. Ggggrrr- I can see my daughters engagement and motivation evaporating rapidly with this teacher. So- we will work on spelling, and I will keep my mouth shut as long as there is no impending disaster!

Hi everyone- as most of you know I have two daughters age 12 and 9 diagnosed with pandas 3.5 years ago. The good news is that (knock on wood) they are doing exceptionally well. Both are excelling academically and socially, and living life with very little or no anxiety/ocd. Whew! (we still do see reaction to illness, but mild, thankfully, in the last year or so). So- my oldest is the one that I am going to talk about now. She does have a 504 plan, which is relatively empty, and really not needed- but we have it in the event we do. She is an incredibly gifted student at a very challenging middle school. She is engaged, smart and puts a lot of effort in. She had a wonderful year last year, straight A's and lauded by her literacy teacher as one of her very best students. Well, this year so far the literacy teacher is a lot tougher. She has come down on my dd very hard (in terms of grading in class assignments) for spelling. My dd is a very poor speller, and she herself would acknowledge this. In my gut, I see this as a remnant from pandas. In 2nd grade she was one of two kids in her class that the teacher made a separate advanced spelling list for- she could spell anything. In third grade she contracted pandas, and by the end of fourth (when I had time to actually LOOK at the schoolwork after 2 diagnosed with pandas) her spelling was really bad. Her spelling is so far off of her academic abilities in every other area. My other younger daughter, who also does well in school, also has a lot of spelling issues. So here is my question- what would you do? I am planning to wait it out a couple of months, and as long as it looks like dd can maintain a B in her class (even with marking off for spelling) I will stay out of it. However, if things are looking worse than that- I really think she should be allowed to use a dictionary in class (maybe she is and just doesn't know?). Part of me thinks if the spelling issue is from pandas (disgraphia?) then she should be accommodated with being able to use a dictionary for in class work. The other part of me says, this is life, as long as she will pass she should learn to deal. Thoughts? Also, any thoughts on improving spelling for a seventh grader? Thanks!!

Nancy- That is hysterical. It is also great, and probably shows how far he has come- that he assumes others would look at YOU as the crazy one!