dcmom

I am not sure where you are, but could you ask the docs to consult a pandas expert. Some docs with impressive credentials might be; Dr Swedo at NIH, Dr Leckman at Yale, Dr Josephine Elia at CHOP. Let us know if you need their contact info.

Rockytop- I hope you have had some pms? I have thought about this, we haven't done ivig, but my kids have had IV solumedrol (7mg/kg, up to 6 doses), and it has been a LIFESAVER. So many kids have a really rough time immediately post ivig, which is hard to imagine going through when your child is pretty bad off to begin with As long as steroids are not generally contraindicated with IVIG, I would push for it (I have NO idea if steroids would diminish the effectiveness, or anything, that is what you would want to check out.) If you do the IV steroids, I would push for the 7mg/kg dose, twice a day, for both days- the doc we share has not wanted to give my girls that dosage ?? but that is what they had (in crisis situation we got a doc here in NJ to do it) that worked.

Both of my kids just got strep ( one on Augmentin and zithromax, the other on zithromax and rifampin). The rapids were positive. Clindamycin cleared it for them. I would ask them to culture for type, and if positive consider clindamycin.

Oh, and BTW, I have two pandas girls, who both at some point- could not get off the toilet due to ocd. One for EXCESSIVE wiping after urination (meaning and hour in the bathroom), and the other for fear if she got off the toilet in the evening she would vomit- so she would sit there for two hours. We struggled, and I am NOT a psych- but this is what we concluded. This type of thing can be a panic attack caused by ocd. Trying to push too hard or force the issue COMPLETELY backfires on us. We needed to CALM the whole situation down. Although counter to what most therapists would suggest for ERP, we would LET them do what they needed, with some love and comforting (although at the same time matter of factly telling them this is a panic attack, this is ocd). Once we LET them do what they wanted for a few days, they seemed to calm to a place where we could make an ERP plan. I haven't followed your complete story, how old is your dd? Have you done therapy (I am in NJ, and have not found a good ERP therapist, so I imagine you may have not). Do you have the book "What to do when your brain gets stuck" a workbook for kids to overcome ocd? It is excellent! Even if your daughter cannot do it- it was actually the book that gave me the simplest handle on ocd. Ya know- when you have two kids with raging ocd- reading a dry 300 pg book was impossible- IF I did get my tush on the sofa, I would be asleep, not reading. Anyway- things WILL get better.

Wilma- While we never had this reaction to oral steroids, my daughter went completely crazy for a day following IV steroids. Fortunately, once things calmed down it lead to steady improvement! Hang in there!

Yes JAG- I hope what I meant to say did not come out wrong- I think high titers are meaningful, and a trend in titers can be meaningful- just that low titers are meaningless. I think we are all on the same page

Hopefully someone else will chime in- titers ARE NOT the offending antibodies in pandas titers (ASO and AntiDnase) are something like the reaction to the toxins released by strep. 30% of all kids do not get a rise in titers after strep. My daughter had a positive strep culture and never raised titers. Negative titers are relatively meaningless, positive titers can be significant, and the trend of the titers is probably most meaningful. The antibodies that attack the brain, or cause the molecular mimicry, can only be tested through Dr Cunningham's research study. I am sure someone else can give a better technical description, but this is the jist of it!

He has been one of the biggest non believers- hard to imagine that has changed much- or enough, at least, to get proper treatment. He has responded to an email of mine in the past- so you might want to start that way...

YES< YES< YES! Great in crisis- a rock When the crisis passes, I fall apart; weepy, impatient, depressed, etc. I think it is natural- during crisis, you can't think about yourself, your life, their future, etc- you act. After, when there is a little breathing time- you respond emotionally. It will get better- and yes- I also do remind myself of the worst of worst times, and that gives me good perspective!

Hi everyone! I am coming from the other side of the coin, a bit. I have two daughters diagnosed with pandas a little over two years ago. They have been a pretty classic presentation. They were both physically healthy and neurotypical, with no issues prior to onset at ages 5 and 9. They presented with an overnight onset of debilitating ocd, initially at the same time as positive strep culture (with only very minimal illness symptoms). They respond very well to pandas treatments of abx, steroids and pex, and both had about 9 mos of total remission prior to the stuff we are dealing with now. They do relapse with other triggers- illnesses, loosing a tooth. We have been trying to battle pandas as aggressively as possible (only limited by finances and doctor access at times). But, with all of the talk of lyme on the forum, I had trouble sleeping, so we had them tested. Both girls were IGM positive, and IGG negative. IGM was about 4 positive bands, IGG nothing (maybe 41- have to relook). Our initial ID doc (works with Dr Fallon of Columbia, ordered Igenex, not your typical ID) felt the test and symptoms indicated exposure- but not chronic lyme, and to stay the course of pandas treatment. Our pandas docs, plus a few others I consulted agreed. Went to an llmd in MD, and he wanted to treat them for chronic lyme. I felt I wanted to try, and started one on augmentin, zith, tindamax combo, and the other on zith, rifampin (allergic to penicillin). We have seen NO change- NO better, NO worse, nothing. The girls did get strep, which has caused an ocd flare up, we have used steroids which have significantly calmed things down. Right now I still have them on the lyme abx, but I am struggling with giving them SO many meds that don't seem to be helping. I DO NOT want to create another problem. Both of them had pex, and it was a small miracle. Both went into the hospital debilitated by ocd, one came home 80% better, and was 100% within a month, and the other was 100% when she came home. It did not last, but we were able to keep them both at 90% for a year. This is why it is SO important to know what we are dealing with, yet it is very hard to figure out. I struggle and worry every day. Yet- I feel I need to follow what works. I know I cannot forsake immune modulation for lyme treatment for my kids. But- they look like pandas, and have no brain fog or physical complaints. Laure- have you done the Cunningham test? My kids antineurals were all elevated. I am thinking this alone is a case for PEX (is this right?). Maybe a redo of that test would help you figure out if it is autoimmunity- in which case pex (or maybe IVIG) would make sense. When my kids have responded to pex, or to iv steroids- it has been at times when a course of oral steroids did not cut it. LLM- I have always been nervous about the possible herx, flare, turning back the pages of IVIG- my kids have been in really rough shape when considering it, and I couldn't imagine dealing with a "worse". In my experience, just when I think I have a real handle on stuff, it changes. AND each time they flare, or change, I feel like it is a process of reinventing the wheel to get treatment. It is just so hard; hard to watch them struggle, hard to feel totally confident on a course of treatment, hard to get the treatment they need, hard, hard, hard. Gggrrr- glad I have everyone here!!!! It is such a

JBG50- Interesting, thanks. I have just restarted dd, 10, on zoloft. We started a few months ago, but didn't feel we were getting any help with the ocd from it. So we d/c'd a couple of weeks ago. After (well she had strep too- so its a mess trying to tell what is causing what) a week or so, we started seeing some mood issues- very mild depression and oppositional stuff. Started wondering if maybe the zoloft was helping us in that area- so put her back on to try. At the time she was on the zoloft- ocd was there, but mood, enthusiasm, optimism, etc was remarkably good, esp considering the ocd she was dealing with. The good mood, optimism is SO helpful to battling the ocd. She only takes the 12 mg. How long does it take for you to see effect- is it a few weeks? I am wondering if we would be smart to consider trying the 25mg at some point, and if so how long do you think I should wait? thanks!!!!

Laure- My girls are pandas- looking at lyme, but not feeling chronic lyme is our major issue- but frankly, who knows? I have found, that my girls do not (mostly) get better without immunomodulation, meaning pex or steroids. They were in crisis (ocd) in January, and we did receive a "go ahead" on an oral steroid burst from two docs that treat lyme. It reversed our trend, so we could continue healing. I am afraid without it, we would still be in a horrible place. Talk to your doc. I think steroids can "lower your resistance" to illness, but do not really "immunocompromise" you unless taken more long term. I am sure Dr Jones will have an opinion- be clear to him how debilitating the ocd is. This is the biggest issue for me with the lyme and pandas thing, and why (for me) it is SO important to figure out the relationship, and what my kids, all of our kids, have. It is not just a name or label, but the whole premise on how to treat the child. Steroids are contraindicated by lyme docs, and a lifesaver for treating pandas. I feel for you- for we suffer with ocd here. Both girls were so bad in January- and it makes them SO miserable. We were almost at 100% and they both got strep a few weeks ago, so now we have had a significant "bump" in ocd (and the anxiety, depression and combustibility) that go along with it. Hang om there!

Hi everyone. I am having a hard time deciding how I feel about this issue for my daughter, so wanted to bounce it off of the smartest parents I know DD10 has had a rough year pandas-wise. Normally, she is a bright, enthusiastic, anxiety free, school loving kid. She excels academically and loves school. When pandas has hit her, twice now, ocd is her major issue. She has an INTENSE fear of vomiting in public which keeps her from attending school. We do ERP, and work on increasing her time at school, but this year she has done almost half of the year as a homebound student. We moved, and were new to the school system this year. She is in her first year of middle school, fifth grade. All new students start in regular literacy and math, and are moved to honors classes as advised, the following year. She was completely on track to be put in honors- the regular classes do NOT challenge her, and her average is a 98. Her school has been beyond wonderful. They have a homebound program, where here actual classroom teacher comes to our house for an hour a week, tutoring her and giving her the class and homework. At the same time, she attends about 1/3 of the day at school. She keeps up academically with NO issue, although due to some time limitations some of the assignments were skipped or abbreviated. I have lots of support available to her as my dad and his wife are very active, hands-on grandparents who are retired middle school teachers (math and english)- willing to tutor or give extra help when needed (have needed when Math teacher could not make some homebound sessions). DD has a great work ethic, and is very motivated/concerned about grades/ academics. She was not thrilled to be in regular classes this year, and was expecting/ looking forward to being in honors next year. At the onset of pandas, when she had missed a month- I planned to push for her to still be put into honors. But as this has dragged out for almost half of the school year- I expect that honors would be out of the question. One part of me wants to just forget honors- it is 6th grade- I know it has no bearing on her future. The other part of me (maybe the denial part) doesn't want pandas to define her life, and take yet another thing from her (ocd has driven her from her formerly beloved extra curricular activities). I have been trying to push it out of my mind, but ... This morning she mentioned that she was nervous about the standardized tests (today), because they might determine whether she was in honors next year. So her expectation has not changed, even in the face of the reality that she is not actually IN school that much. So I realize that this issue needs to be addressed, with her, and possibly with the school, soon. What do you think? Should I tell dd to forget about honors for next year, it is important to just work on getting to school, etc. Do I ask her what she wants? Do I push the school to offer her at least on honors class, to try? Help!

Hi Justajoy- From what you describe, your daughter may have a mild case of pandas. I will give you my advice FWIW, and I am sure many others will chime in. Hopefully, your daughter's case will continue to be mild and/ or disappear. BUT- after what I have been through, I think you are in the best place now, to prepare for the "what ifs". Some kids have mild cases that go away with antibiotics- others seem to have cases that get progressively worse until properly treated. Since you are in relative calm now, I would get a pandas doctor on board. Someone willing and knowledgeable, who will treat your child (if needed) with antibiotics, steroids, ivig or pex. Tell us where you live- the reality is- you will most likely have to travel. In my experience, the more aggressively and quickly your child is treated- the more suffering you can avoid. If you have a pandas doc on board, with diagnosis, if you have to deal with the "what if"- you will be prepared and able to get quick treatment. Best wished...

Can you elaborate? I feel less focused on a cure, these days, and more on proper and aggressive "management". Gosh, quality of life for my kids could be much better if we could get the treatment they need (pex) immediately, and as often as needed! We do probiotics- but in a sense only to counter the antibiotic- wondering if we should be doing more?

Momaine- Just to play devil's advocate I am a MAJOR fan of pex. Both of my kids had it. IF you are dealing with pandas- I say why not. I don't think it would be helpful if lyme is the whole problem. So- I am not sure where you feel you are with both illnesses. I will say PEX is not a cure. BUT- it will clear out the anti neurals (maybe a new cunningham test would be a help with deciding this)- so if they are causing a problem you may get some relief. If lyme (or some other current infection) is causing autoimmunity- then unless you get that stopped- your relief will be very short lived. But- I will tell you- both of my girls needed the pex to stop the antineurals- they were not getting better without it. I don't see how IVIG is SO much less invasive than pex. Both have their pros/cons. I think lots of docs are intimidated by pex- but it is a clean, straightforward procedure, with the only risk lying with the central line (which is in only three days- prior to real risk there). There are no side effects like IVIG- and you are not adding anything- you will not make anything worse. True- Dr B cannot do it in his office- he may not even be able to get it for you (getting it - is the biggest issue with pex). Also- according to our hem/onc docs who do pex everyday (and usually on VERY sick kids)- it will not render the child immuno compromised. Your antibodies are created by Bcells- which REMEMBER. For our kids this is unfortunate- this is why pex is not a cure- but your immune system will call up the antibodies immediately if needed. Most docs are not that familiar with pex, and picture it the way swedo did it ten years ago- it is NOT really a risky procedure. Our insurance ended up covering it- and their "negotiated rate" with the hospital was $5k total- not bad. It gave my kids their lives back immediately (took away ALL ocd). We have had problems since- but I do not regret doing it- and wish we could get it every few months. I know most on the lyme forum will disagree with my opinion- but just wanted to offer another side. It depends on what is causing the ocd.

momwithocdson- Interesting post. We are in such a mess over here, trying to figure out what is working/not- but something in your post struck me. DD10 had an extreme episode in December. We did IV steroids, which helped a lot, until she got a stomach flu in January. Since them we have been mostly fighting ocd. She has- since recovery from the stomach bug- been on a gradual track of improvement. At some point we added very low dose zoloft- to see if it would help with the ocd- it did not. She was on it for a little over 2 months- with no apparent help- so on the advice of 2 docs, we took her off. Immediately prior to taking her off, she had a strep infection. We saw a minor bump in ocd/anxiety immediately, that are calming now. But- I am now noticing some mood issues, I haven't seen since December: mild depression, mild oppositional behavior, lack of enthusiasm- where a few weeks ago she was very happy (despite the ocd stuff). So- maybe the zoloft was helping her in terms of mood? Ay- now to try to get another prescription for that over the phone- not going to be easy

Unfortunately, I think there is just not enough known about pandas and also the carrier state. A carrier state is usually thought of someone that is colonized with strep, and not infected. Docs tend to think of this as a benign state- but this is certainly NOT the case for a child symptomatic with pandas. Clindamycin is the recommended antibiotic for carriers. It is interesting that Amy had such great luck with it. Both of my pandas girls just had strep (we haven't had any chronic strep issues, but we have had major pandas issues initially triggered by strep). We immediately treated them with 14 days of clindamycin, which cleared the strep (fever, fatigue, sore throat subsided, negative culture), and thankfully have only seen a very minor bump in pandas symptoms. I am crediting the clindamycin. In doing some research, I did find a study that showed, that clindamycin was much better at preventing an autoimmune reaction (in the petrie dish) than other antibiotics after a Group B Strep. I know it is a different type of strep- but it is possible it could have that effect on our kids as well- I have no other explanation as to why they fared ok with this strep. I plan to treat immediately with clinda if/when they get strep again.

Topaz- I feel for you, becaue I have a 10 yr old daughter who has struggled with ocd/anxiety and the resulting depression of pandas. I have a few thoughts... I think it is SO hard on these kids when they are doing great, and then due to an autoimmune flare, they are overwhelmed with anxiety. We have made the number one priority in our family- health (meaning mental and physical). I think it is very important to figure out what is causing the anxiety, what is the ocd. My daughter had major ocd around something at school. She was out of control- panicked, oppositional, depressed, etc. When we took a step back, started an ongoing conversation about the ocd, and pulled back on her exposure to it- she TOTALLY relaxed. She stopped panicking, was able to be herself at home, and we have slowly worked on getting back to her life. We have done a combination of homebound instruction (plus an incrementally increasing day at school). It is NOT easy for me But it is so much better having my daughter happy and calm, and working on her ocd at a steady and manageable pace. Maybe if you could figure out what the ocd is, and minimize it, but with a plan of working on it- he could calm down, That being said, both of my girls have pandas, and antibiotics have not always been enough medical intervention- we did steroids and pex. So you may want to explore being a little more agressive medically, if things don't ease up. I have really tried hard to make my number one priority for my girls (since pandas), happiness, finding joy in EVERY day. If that means some days they don't brush their hair, don't get dressed, dont get to school- that is okay. I try to look at the bigger picture. It is not easy

I am assuming that swallowing pills are an issue? Clinda comes in a capsule, best bet- swallow it, but, my ped told me we could open the capsule and mix with something, and that would taste better than the liquid. My dd swallowed it- so we didn't have to do that. Other thought- my older dd had adult sized capsule- pretty large. My little one had a mini capsule- maybe you could swallow those? Good luck- taking medicine stinks

Dedee- Ugh- I am so sorry. It is rare to find a doc who really understands what a crisis this is for the child . The waiting for proper treatment is very cruel. I am not sure why she blew off pex. I would think in your daughter's condition, it would be the best option. PEX works quickly. You would most likely see some results right away, where with IVIG it takes time, and some kids seem to have a rough few weeks before improvement. This is what has always made me nervous about ivig. I would not give up on PEX. Maybe try this approach- find out who (doctor) is in charge of the pheresis depts at all of your area hospitals. Contact them, tell them your story, that your child has a diagnosis of pandas from a doctor from out of town, and that you need for her to get pex. See if they can refer you to a doc that may give you the orders. I tried this route recently, but then went another direction. I did speak with a doc, transfusion specialist, at a local hospital. She told me she would do it- but she needed orders from a pediatric doc. She also told me many hospitals that might not have pheresis depts, have a contract with the red cross to come in and perform pheresis. We have also gotten immediate relief from crisis with IV steroids. Both of my girls did methylprednisolone, 7mg/kg, IV BID, 3 days. You could have this done inpatient, or even at home. Good luck- I, like so many here, have been in your position, and it is beyond comprehension. What is SO hard, is we know what this is, we know what will make it better, yet it is SO hard to get it done. Why must every parent reinvent the wheel? Keep us posted, and hang on to the fact that she WILL get better,

How long was she on the pred? Maybe Dr L would consider giving you a longer course? My daughters have both seen long lasting results from 30 day steroid tapering course- not a cure, but has been able to end episode- sometimes. Also- as she is weaned off of steroids, I would put her on regular advil dosing for a week, and then taper off of that- learned that on a site for another autoimmune disorder- prevents rebound inflammation. Fingers crossed for you!

I want to chime in. ALL of the pandas docs have their "issues", unfortunately. Maybe that is what makes them able to think out of the box, be compassionate beyond the level of their peers, and treat our kids. Dr T is EXTREMELY smart, and very kind. If you keep at it, he will come through for you. I find, personally, that it is not a bad idea (albeit expensive) to have more than one "pandas doc" on your team- as it is a complicated, and at times urgent illness. Anyway- I did just talk to him, he is around, so keep trying

Have you tried clindamycin? Both if my girls came down with strep while on multiple antibiotics (one zith and augmentin, the other on zith and rifampin). We switched them to 14 days of clinda, and it seems to have done the trick (negative cultures, symptoms disappearing).

I will second what peglem said- I have two pandas daughters, both ocd, both TERRIFIED of needles and medical stuff, both react very differently to things, and both LOVED the Baxter IVIG bear- one was 6 and one was 9 at the time. I was nervous to give it to the one who had it first- thinking it would make her afraid- I think it made her feel in control- in a very positive way. When it was the nine year old's turn- she said will I get to have the bear too? For the record- my kids had pex, not ivig. They have gotten a ton of use out of it since having the procedure- so I think even if you have done it already- it can still be positive play therapy. My younger daughter even went so far as to make a pretend pheresis machine out of a shoebox...