dcmom

Emerson- I didn't read it, but there is a book about an epidemic of encephelitis lethargica in the early 1900's that was recently written by Molly Crosby. I actually had several emails with her, she was considering writing a pandas piece- which unfortunately was put on the back burner. e

We actually did do daily treatment dose antibiotics for two years! I don't know why- fear, I guess. When diagnosed with pandas, both girls (this was at different times) did a month of full strength abs. Then we added a month long steroid burst. We never removed the abs, for about 2 years. Partly for prophylactic, part for unknown, because this was our doc's protocol, etc. This summer, after getting strep while on full strength abs- I decided to take them off of everything. Absolutely no change. Now, back at school, the girls on on zithromax two times per week. Frankly- I don't really think they need to be, but I am too scared, it eases my mind a bit. I don't think it is realistic to prevent them from getting sick, unfortunately, we have to figure out how to deal with the aftermath when they do. Our protocol now is, zith twice per weeek. If we see an increase in symptoms we plan to do five days of daily zith and regular advil dosing- immediately. We'll see. So- my suggestion to a pandas parent (if they asked) would be to do full strength antibiotics for a few months, incorporate a tapering steroid burst (month long), and if all seems well, wean off of the antibiotics as long as you don't see an increase in symptoms. I have started to become concerned with "unintended consequences", and therefore try to give as little meds/ supps as possible. My girls are on daily vit d (normal child dosing, not extremely high), daily probiotics and twice per week zith. I will drop the abx over the summer. Oh, and my younger daughter gets major circles under her eye during exacerbation- goes away when "healthy".

cab- For ocd the only therapy approved to work is ERP therapy. Exposure and Response prevention. We have been to quite a few (expensive) therapists, and I can say that none of them "got it" in the way that our doc did at USF in FL. It is a very clear, studied, and proven type of therapy that unfortunately not many docs specialize in. Check the IOCDF website for practitioners in your area. Email/ call them for recommendations on a budget. Give them your son's sob story. Ask them for help. The antibiotics may clear the infection, but you may need a combo of immune modulation and ERP to rid him of the ocd. If he has had ocd since onset in 2008- I venture to say that he is going to need ERP therapy no matter what. I think your money is best spent with some steroids (ask Dr T if that s ok) and some really tough ERP. See if your plan will cover therapy in FL- if you can afford the airfare. If not contact local universities and big hospitals to see if any have ocd programs. From our experience, when your child is fairly debilitated with ocd- once a week is a joke. It needs to probably be 5 days a week, for at least one week, and then maybe once a week thereafter. You may have success finding a program that will work with you on pricing (I think lots of University programs will). The ocd will (most likely) not resolve on its own

I think one of the biggest problem is that so many do not have any understanding of ocd and how it manifests, including: parents, grandparents, well meaning family, teachers, principals, school psychiatrists, pediatricians, neurologists, etc, etc. I went to my ped (no longer my ped) twice with CLEAR ocd (well, clear to me now), and pretty common young child ocd (toileting rituals), and upon being negative for a UTI her answer was "positive reinforcement". Thank god I have the self confidence to know that nothing I was doing wrong or right was going to affect what was going on, and we kept searching. GGggrrr....

bsimon- a couple of thoughts.... Try to evaluate progress weekly, rather than daily. Healing is somewhat sawtoothed, IMHO, but you should see a positive trend. Dr T is a great guy. He will be open to trying different things, I think you just have to keep on him- if this is not working, ask him what to try next. I know very little about Myco. From what I do know, I think, it is very hard to have a read on what is really going on with titers. It is hard to know if there is a current infection, past infection, etc. We have found with our kids, and this would only apply if you are fairly certain you are dealing with pandas, and there is no immune deficiency, etc- that we only need to do what is reasonable to get the infection, but the key for us is stopping the autoimmunity. So- we had strep, and used clindamycin to treat for 10 days (this is a very aggressive "carrier' state treatment, yet it is something totally accepted by mainstream science.). After this, we had to stop the autoimmunity with steroids. It was after the strep that my kids started ramping up into a full blown episode, it was the steroids that turned this around, not the antibiotics. We have also found that therapy is necessary to resolve the residual ocd, sometimes. From my experience, in PANDAS, the autoimmunity is the key. I would not wait around for months trying to fight an infection. If you think it is myco p, or strep- find the most aggressive antibiotic you can for those bacteria- and then move to tamping down the immune system. I think Dr T can be a major help with your kids- I know he has with mine- he is opinionated, yet open minded. However, I do think sometimes he (and other docs) need to be reminded that it is not acceptable for your son to go on this way. Hang in there.

My kids have never displayed autistic or asd symptoms. They are extremely verbal and articulate, and also at ease with showing affection, along with having great ability to "read" others. This never changed, even during exacerbation. Their symptoms have been almost exclusively ocd. I can imagine that if your ocd centered around interaction with others, it could be perceived as autistic.

Hi Chris- I have two daughters, age 8 and 11. We are almost 3 years into pandas. Both had overnight onset of debilitating onset of ocd, anorexia and sleep issues with strep infection. Things have been very up and down for them, however, they clearly react to illness. Both have had 2 to 3 overnight onsets. They have a pretty clear pattern of relapse and remission. We have been extremely fortunate to live in the right area. We lived in DC when they were diagnosed, 15 minutes from a top pandas neuro. We moved home to NJ last year, specifically to be close to my family, as we really need the support at times. Our insurance paid for pex once, for both. It was a fight, the doctor and my dh's HR dept were on the phone daily, and it took three weeks. I know that pex is not an option for most- and that stinks, because I am a big believer. However, post pex, they have both had an episode that we managed with steroids. I really think steroids are somewhat underused in pandas. I think there are probably many treatments that are typically used for autoimmune disorders that could be helpful. I found a couple somewhat helpful docs by email. If you have any time, I would consider emailing every neuro and rheumy at your somewhat local hospitals. I think teaching hospitals are typically the best. You will have an easier time if your child had sudden onset. My kids are doing really well, right now. I am always afraid pandas will appear, and it does seem we will have yearly episodes (just not possible to keep them from getting sick). However with being aggressive with both medical and psychological treatment, they are able to live a full, mostly happy life. We have found antibiotics helpful to clear infection, and antibiotics did remit their initial episode, however, since then I don't think they have been too useful. We have found immune modulation (steroids) and ERP (therapy for ocd) to be our best options. Does your son suffer from ocd? Did he have strep or sudden onset? How long ago? How have you treated?

Both of my girls recovered from their initial episode with antibiotics. It took one month of full strength antibiotics. Frankly, we saw most of the improvement in that fourth week. Subsequent episodes have taken more aggressive approaches. I would certainly give antibiotics a month, but probably would look for something else if you have not seen constant or significant improvement.

Hi Chris- I am sorry for what you are going through. I have two daughters with pandas, so I understand your frustration. I will make two suggestions based on what has worked for us... Firstly, my kids clearly react to things that trigger their immune system, mainly illness (but other things, loose teeth, etc). We do use antibiotics to clear infections, however we have found that clearing infection is NOT our problem. Settling the immune system after the infection is the problem. For my kids this does NOT happen by itself. We have used PEX or steroids to do this, with varying but positive results. We have found this to be KEY. The quicker we respond with immunomodulation, the less we need to fix. Second, aside from the medical intervention- the very best thing we have done is a three week intensive outpatient ocd therapy program at University of South Florida. It was relatively budget friendly (we have had NO success finding a qualified psych, nevermind someone who takes insurance, locally). The therapy was covered by insurance- we paid about $150 per child total for the 3 weeks- and we stayed for free (most meals provided) at the Ronald McDonald house around the corner, we didn't even have to rent a car. The only real expense was flying to FL. The therapists there are EXTREMELY qualified, and they know a lot about pandas.

Nancy- very interesting. So- since I am still a bit of a dummy with the whole glutamate thing.... who cares if it is the chicken or the egg, right- lets just treat it. So what do we have for glutamate modulation, that we can use sporadically (as in during an exacerbation)? NAC- have it in the closet, haven't tried it- haven't had the patience (during an episode) for the whole ramping up time. I know there are some more heavy hitters- can they be used temporarily, as a band aid- and I assume this wouldn't get to the root of the issue, so we may still need to do immunomodulation? JAG10- well- here is how it happened that we got onto steroids by IV: we have done oral steroid bursts which have had two results: sometimes great and long lasting, other times not enough. When my girls both had an episode this past Dec/ Jan, it literally started about 5 days before Christmas:( It was (for the older one) overnight, and bad. We could not get into our usual pandas doc quick enough- and I cannot sit around in with them in an episode- I get frantic (in a good way, I think). So I emailed every local doc I could thing of, called a bunch of hospitals, used every contact possible to find help. I wanted PEX, because it had worked before. A local neuro emailed me back and told me to bring her in the next day, he works at a clinic in a very poor area, but he squeezed her in. Frankly, I don't know that he is/was a pandas believer, because he said stuff like "well, we can call this pandas. etc"- but he was willing to help. He wanted to rule out a few things, so he did an MRI and VEEG (normal). He said he would consider pex- but that it was risky- and he prefers to work in a methodical way from least risky to most risky. He felt this was IV steroids (we were on an oral burst- that wasn't helping), IVIG, PEX, in that order. I had spoken at length to a pandas mom (child is now grown), who had tried many things, and she told me the best treatment they had done was very high dose IV steroids. I was thrilled to try the IV steroids at the suggestion of this doc. (risk- yes, possible side effects- yes, BUT no blood product and no central line). Oh- and one more thing. In our experience, Pandas comes on overnight, but then continues to spiral down and add symptoms for the following weeks. PEX and IVIG take a little time to get organized (if you can get them)- IV steroids can be done immediately. My theory is that the sooner you jump on the episode- the less healing you need- stop the symptoms before they appear. So- this is a lot of theory- because last year was anything but smooth- but this is our game plan now- we will see how it works. So we did it in the hospital for both girls. 7 mg/ kg per dose X 4 doses of solumedrol. I really like the iv steroids- I haven't really found a doc that wants to delve into the difference in risks with steroids oral vs iv- but- EVERYTHING I read about risks of steroid usage is relating to long term usage- not necessarily dosing. So- we have done 30 days of steroids before- this is 2 days. It is in and out. It is a higher dose- which I think is what really knocks down the inflammation. My kids had no apparent side effects. In april, they both had strep. Both went into exacerbation. Both had iv steroids again, this time at home. I will say, it is not as quick and as thorough of a fix as pex was- but it has basically taken a kid that was spiraling downhill and reversed them into a healing trend. After the steroids, it took a bit longer to see that 90-100%- for us pex was immediate. But- steroids are cheap, covered by insurance, can be done at home, not traumatic, and while there is some risk, sure, I think the risk is smaller. Now- how often can we do this? I don't know. But, I think once or twice a year is reasonable.

To Tmom's question: My kids were initially triggered by strep (pandas). Their symptoms are ocd. They were put in remission by antibiotics after this initial episode. Since, they react to lots of illnesses, immune challenges, etc. We have a pretty clear pattern of exacerbation and remission (with treatment), however with a baseline that has been creeping up a bit. Both had PEX for non- strep triggers- one post T&A episode and lots of strep exposure, where we couldn't keep things calm. And one post H1N1, and then a cold/virus. For both girls the results from the PEX were dramatic, immediate, and thorough. So- in our experience, immune modulation is necessary, no matter what the trigger (if you are pandas). We have also used oral and IV steroids, which have reversed an episode, although not as quickly or completely as PEX (this is where we see the baseline creeping up). So now a glutamate question- about which I know nothing- with this pattern of exacerbation and remission mostly traced to illness- would glutamate still be a player? Does illness affect glutamate? is the blood brain barrier a key in glutamate issues causing neuro issues? Thanks!

Agree with nicklemama- I would start by upping his abx and do regular dosing of advil, for about 5 days. Keep a close eye, and re evaluate at end of five days. If you see an extreme increase in pandas, stomachaches, headaches, sore throat or fever- I would get a swab for strep. good luck!

sadie- Hi! So glad your older son is doing well! From our experience- I would start trying pandas treatment right away. Firstly, low titers are meaningless- so I would drop them from the equation (I am sure you know this). I have two girls with pandas. Youngest diagnosed first due to overnight onset of debilitating ocd (by overnight I mean about 4 weeks). At the same time, older daughter had strep, and went from my easy sensible kid- to a difficult kid We didn't think she had pandas, because she was just being difficult. We attributed it to newly onset stomach aches (which were actually pandas) and/or stress of sister's illness. Even though we were learning so much about pandas and ocd, we could not see it in our second daughter, ggrrr. After 6 mos, we came around and had her do the Cunningham test. Her camkinase was normal (which threw us off course for another few months), even though her antineurals were a bit elevated. Well , a few months later she contracted H1N1, and it became crystal clear she had pandas. Maybe it was denial, but it was much harder to really see what was happening with our older daughter. Now, both of my kids have VERY similar courses of the disorder. So, we know, just from anecdotal info from the board (and my neurologist now routinely asks about siblings upon diagnosis of pandas), that one pandas child greatly increases your odds of having another. You have some correlation of symptoms with illness. You have some indicators (though not perfect) from the Cunningham test that something is going on. And, you have ocd. I think the only puzzle piece your are missing is response to pandas treatment (although you already have seen benefit from antibiotics). So- while I am not completely contradicting LLM's advice (she is very wise, and knows a TON about lyme and other issues)- I would say your most sensible course right now would be to try pandas treatment. We have chased testing on TONS of stuff. Both of my girls have probably given 30 vials of blood, looking for a "cause" or other "problems". Frankly, they test normal, or great, in every test- except Cunninghams. All of those blood tests, while they ease my mind, have really been a waste of time. We have gotten amazing response to pandas treatment- and IMHO that is the truest test. If, of course, you don't see the resolution of symptoms that you see in your older, you need to be quick about switching courses.

I consider getting full blown OCD (and or other symptoms) over the span of 4 to 5 weeks- sudden onset.

Dedee- SO sorry. If in any way you think there could be strep involved- I would suggest a 10 day course of clindamycin. Both of my kids contracted strep while on multiple abx, one on zith AND augmentin. The clindamycin cleared it right up. Of course, we had to followup with steroids..... Hang in there- you ARE a supermom, you will beat this thing. e

mamapanda- I hope you find some clues while you are in the classroom. One thing I can add is; we have seen different exacerbation levels with my girls. They have both had major episodes that come on fast, with lots of ocd, eating and sleeping issues, etc- these issues are unmistakeable as they severely affect functioning. We also have what I call "blips", minor increases in symptoms. These blips happen due to various things (that I can tell) loose baby teeth, exposure to strep/illness, minor illness, etc. They seem to come on a bit slower ( or maybe I just notice them more gradually because they are more subtle). What we see is increased difficult behavior at home.... is it possible your low level symptom can be difficulties at school. There are so many variables; could be ocd or adhd caused by pandas, and leftover from initial episode. e

Norcal- good questions! Please follow up with what you get from the TX symposium for those of us who won't be there. A few thoughts- Swedo has stated that PANDAS kids tend to react to subsequent non- strep illnesses. I dont know the difference of pandas and pitand, but my kids were triggered by a known strep infection, yet can be triggered by other illnesses, I consider them pandas. In my personal opinion, confirmed by Swedo (as her opinion) a year ago, right now pandas is thought of as an autoimmune illness to which there is no cure, only remission. Why some have very long term remission, and others seem to fall into a more chronic state, it probably a great mystery of medicine- just like why some with lupus or ms have long term symptomless remission, and others very difficult course of illness.... Lastly- if IVIG is so helpful to your son, is there a reason that you are not pursuing a more regular interval of infusions (I believe some on here have had luck with regular infusions, Dr B style). Glad to hear YOU are in a healthy place! I have had pneumonia for the last two weeks, that is why I have been online too much. I need to move to that place this year

We have had major bathroom issues- being the primary issue for my younger dd. This is how I look at it. Apparently, there is some bladder (internal) control that takes place in the basal ganglia (ggrrr). This is according to my neuro, who spoke with another specialist. If that control isn't working properly- your child's signals can get mixed up. They can empty their bladder and still have the urge to go. That is the first component. Then, I think ocd can latch onto this. For my older daughter, while in episode, she uses the bathroom very frequently. She says it is annoying, because she will go, and still feel the urge to need to go- so in the matter of getting ready for bed, she will go 4 times. Urine will come out each time- but not a ton. I think in a normal person, the bladder fills and doesn't give you a signal until almost full- they may be constantly getting that signal- and while there may be urine each time, it wasn't physically necessary to go. For my older daughter it can be annoying- but it has not turned to ocd. (and she is not having the issue currently). This was a MAJOR issue for younger daughter during first episode. I think she had the bladder signaling issue. This caused her to use the bathroom a lot. She constantly felt the need to go, and then ocd latched on and made her worry that she went a little in her panties. She had to constantly run back to the bathroom to check, and wipe A LOT. So while there was an initial physical cause, the ocd took it to an out of control point. She also did have some nighttime and a few daytime accidents at age 5 (which she hadn't done in 3 years prior). My thought on this, was that she had started to avoid going to the bathroom at all cost - because she would then be stuck in ocd compulsions for about an hour. Avoiding, led to accidents. It has been helpful for me to (hopefully) see things more clearly by having two daughters go through pandas, yet at different ages, and with slightly different issues. In the end- this should be treated as any ocd is treated: ERP. We have been somewhat successful with this, although we haven't gone far enough with the exposures to see a complete resolution YET (she is down to this issue bothering her for less than 15 minutes per day, and some days not at all.) I think, with pandas and ocd, it is important to look at things rationally, and say "what would most people do?" So, is it possible your son drank a lot and really had to go 4 times? Maybe. If I drink a lot, in the span of an hour, I still don't think I would go 4 times. But- this might happen once. If it happens more than once- I would say there is something going on. It may just be a interior bladder control signal issue. If it is distressing to him, he spends a lot of time in the bathroom, he tries to avoid activities, he avoids drinking or avoids using the bathroom- I think those could be an indicator there could be ocd involved.

Hi! A few thoughts: The red cheeks and muscle aches could be from the prednisone. Prednisone lowers potassium levels, which can cause aches and red cheeks - we have seen this with my daughter. You cannot supplement with potassium (maybe with a doc), but you can increase intake with food (bananas, oj, mil, cantaloupe). I think you said your son has been on steroids for 4 mos. We do lots of steroids to help with pandas, I have done some research and always supplement with calcium and increase potassium intake via food. My two daughters (pandas) both have contracted strep while on zithromax and augmentin at the same time. Ten days of clindamycin cleared the infection. (clinda is a pretty heavy duty abx, so I would see what happens after 10 days...) For us (pandas), once the infection is erradicated, we have the autoimmunity to deal with, we use steroids, IV steroids, or oral steroids. The hallmark of pandas is sudden onset or ocd and/or tics plus other symptoms. Your son certainly doesn't fit neatly in this box, although some of his symptoms do sound like a mix of post strep disorders. I don't see why you cannot follow the approach of both docs (I totally agree with the need for multiple pandas specialists- we do this also). It makes sense that the first thing to do is erradicate the infection. However, many parents find that immune modulation or anti inflammatory is then needed, which would be your high dose IVIG (currently the protocol for pandas, even being studied by the NIH). If the IVIG helps, I would follow that path. I think parents need to continue with what works, and discontinue what doesn't. At the same time, hopefully the IVIG gets him in better shape, and you can try the new doc's methylation support. If your doc thinks your son has pandas plus methylation issues, and that she can "cure" the methylation part- that sounds plausible. If she is talking about a "cure" for pandas, I am skeptical. Currently, PANDAS is thought to be an autoimmune disorder. IMHO we can work hard to get, and try to keep, pandas in remission- but I would be very skeptical of a doc that said they could "cure" it. Autoimmune disorders as a whole are very tricky, and frankly if a doctor has a cure for them they would be up for major awards! Good luck!

Imkmip67- I am so sorry for what you and your family are going through. The uncertainty is the worst. I would imagine your best option is to do a few things at a time. First, I would not even include your pediatrician in any of this- frankly, this goes way beyond the scope of a ped, and most likely they would just give you bad advice I guess I would stay the course with Dr B a little longer, especially if he is willing to look at other causes, while also trying to treat pandas. There is no reason not to simultaneously consult an llmd and a biomedical (DAN) doc, for some different, out of the box, type approaches. I would go down these paths with an open, yet somewhat skeptical mind (if that makes sense). I also think, while you are looking for answers, it is okay (no maybe very important) to treat the symptoms to give your child some relief, if possible. I am a huge believer in aggressive medical intervention being the best and most sensible treatment for pandas. Yet, if you are not getting relief, I think you should open your mind to looking for relief from other sources. It is not an either/ or scenario- you can do both things at the same time. Medication and therapy can be temporary band aids that could really increase the quality of life. My daughters have pandas. By far, medical treatment has been our main focus, and we have gotten great results. Yet at the same time, this summer we decided to go more intense with therapy- and it was the greatest experience. We did a 3 wk ocd intensive, which gave my kids the tools, and some success, to help them now and hopefully in the future. We also addressed some defiance while we were there, that was a by product of accommodation we had slipped into due to the panic/ocd. The therapy really gave us our power back as parents, and also helped us further our understanding of the ocd. It is not a magic bullet, but it has been life changing. We tried low dose zoloft for one daughter this spring. Unfortunately, It didn't do anything. At the time, she really needed something to just take the edge off the anxiety, so she could confront the ocd. It didn't help, and it didn't hurt. Had it helped, we would have used it as a temporary measure to help her with her therapy. She doesn't need anything right now, as things are going well- but if we have issues in the future we will consider low dose prozac. I talked to a good friend recently, who has one child with ODD and one with anxiety. She recently started them both on prozac, after a few years of trying many other types of intervention. She told me she cannot believe the change for the positive. I wish you the best of luck with your decisions....

Welcome Pandasmex! Glad you joined! We met in DC. Hope the pace of improvement picks up for Santiago!

actual H1N1, not vaccine. Dd had tamiflu, then steroid burst immediately, which stopped a horrific downward spiral, she was fine then.

My kids both had pandas episodes post H1N1. I still cannot bring myself to knowingly inject them with something that could cause and episode. Just can't do it- would rather take our chances with getting the real thing. We are done with vaccines in general for the near future.

NMom- We have dealt with night time fears, and having my dd sleeping in our bed for long periods What I will say, especially if he is healthy, and what you are dealing with is residual ocd, is that a tough ERP therapist could really help. My dd was healthy this summer, yet hanging onto a lot of her ocd. We needed someone tough, to demand that she work on it, and frame it for us in a way that we felt we could be tough with her. Basically, she has NO choice in working on her ocd issues until they are gone, period. This took mostly a reframing of the way we look at things after the ###### that pandas put us through. We realized we had to stop accommodating and expect compliance in behaving, or working toward behaving in an age appropriate way, across the board. It is not that he needs to sleep in his bed tonight, but that you need to tell him, he is expected to sleep in his bed all night on his own- if he cannot do this now, you have a program to get him there in x amount of time- and with this he has no choice. I will say that you will most likely need to address the fears themselves. Is he afraid he will be kidnapped? you will get hurt? THere is probably something pretty specific. For that you would need to do a program to desensitize him to these fears. In other words, you can give him the facts (reassurance) once, but then he needs to work on talking and thinking and being exposed to these thoughts so much, that when they do come up- they will be boring and not anxiety inducing. Glad that everything has calmed down on your end.

During the summer they took vitamin D (one gummy vit) and one probiotic per day. Now that they are back to school, I have added zithromax twice per week (true prophylactic dose). Basically because I am a chicken, and want some type of insurance policy They had been on continuous daily antibiotics for almost two years. We tried the lyme protocol for a couple months, and they ended up getting strep while on multiple antibiotics (first time for strep in over two years). This really made me question what we were doing. So, once they became relatively stable we took them off everything, to try to figure out what the heck we were doing! Nothing changed. If anything, they continued to improve over the summer, and did really well with ERP in working to get rid of some residual issues. With school back, I did opt to do the antibiotics again. At this point I am glad, because for the last two weeks, I have had pneumonia, so I feel like we have some protection. I really think, for my kids- they could probably do without any antibiotics, and just need a quick, aggressive response to any uptick in pandas symptoms. Maybe next year we will try no antibiotics? I am sure you will get to the day where you don't need antibiotics. Summer is a good time to test it out. For now, as I am sure you are, enjoy the improvements!!!!