dcmom

Hi Kathy- I agree with your doc! The best treatments we have had were immune modulating (pex and steriods). We also saw a doc, who was an adult rheumy, and he felt if my kiddos kept flaring that low dose cellcept was a good option. Thankfully, we have been able to keep them well with occasional steroid bursts. We have also stopped all supps AND probiotics, unless they are on antibiotics. We have also done some really quality ERP therapy at USF (a three week, daily, program)- I would really suggest this as a companion to medical treatment, if you are not doing so already. We found that our local ERP "experts" just couldn't get results. I wish you the best of luck- please keep us posted on your progress!

so- is the cellcept not working? I am very interested to hear about this route...

Hey tmom- hope all is okay.... I know that separately, Dr T, Dr L and Dr Swedo all have stated that PEX is the "gold standard" for pandas treatment. I think that IVIG is possibly more popular because it is cheaper, more readily available, and perceived as less risky. I would actually think that Dr L might be the best to answer this, because she has the most experience using both treatments with pandas kids. Know this is probably not the actual facts that you are looking for....

My daughters both tested positive (cuture) for strep while on antibiotics. One was on zithromax and rifampin, the other was on zithromax and augmentin- all full dose. We took them off all antibiotics and gave them clindamycin, which cleared the strep. We did follow with a round of steroids, as we did see some pandas issues start to appear. They were fine. (we are not dealing with lyme, that we know of) That was a turning point (for the better) in our pandas journey. I came to the realization that I cannot keep them from getting sick, but just need a plan in place for when they do. We dropped ALL antibiotics, supplements and probiotics at that point. We only used meds/supps/probiotics if they have a flare up. They have been much better since we made this change, and I rest easier. Hope your dd is fine, and you soon get the go ahead that you are done with the lyme treatment.

spartan- I agree with the others. I really think Dr T is your best bet, esp as an adult. He will take a history, run a panel of tests, and help to determine if you have pandas. He will then try to TAILOR your treatment. Most likely you will do a course of antibiotics (1 to 2 months). If it were me, I would inquire if you could add regular advil dosing for the first week or two. If you don't get enough results, he may prescribe a round of steroids. (for my kids the immunomodulation of steroids has been the most effective treatment). I also suggest finding a really good therapist. We have seen that when our kids have these issues unchecked for a period of time, they become more ingrained, and they need some help to break the pattern. Good luck!

Isad- sent you a pm

hi Isad765- Do you live in NJ by chance? We have a support group in NJ. My daughter was diagnosed with pandas four years ago. We see Dr Trifiletti. I am not going to lie, we have had tough times, but for the most part now- things are really good. Eileen

Hi Megan- We were lucky enough to do pex on both of them during their worst episode. This brought them to their baseline (no symptoms). Since then, I think three years ago, we jump on any increase in pandas. Both girls were on zithromax for about 2 years straight. Both had T&A. Now, they are not on any meds regularly, however, if we see any pandas issues surface, we immediately start them on a course of daily zithromax and regular advil dosing. Usually this calms things, if we start it immediately. If this doesn't help symptoms (usually only happens post illness) then we move on to the bigger guns, steroids. We try to use the least steroids possible, but start them quickly. Once the train leaves the station, things are harder to control, so to speak. It has been a balancing act, and we have had to get very good at reading their early warning signs; moodiness and negativity for one, and temper tantrums for the other. They have each had probably 3 major episodes in the last 4 yrs, since diagnosis. One we did pex, the other two we did IV steroids. We treat the minor flares with the abx, advil and once and a while a short steroid burst. With this protocol, thank goodness, they are at about 90%, 90% of the time. My older one is actually faring even better than that for the last year and a half. A year and a half ago, after they each had their last big episode, ocd lingered, even after we could see they were better. For this we went to USF's outpatient intense ocd therapy program- that was wonderful and we all learned so much.

JPdad- TOTALLY agree! I have TWO kids - both had strep previously (different times) with sore throat, fever, miserable. No pandas. Both had strep again, at the same time, NO symptoms (maybe a little malaise)- but a friend's child had strep so we cultured- positive! PANDAS! Now that autoimmunity is triggered it is here to stay- however, we seem to have had a handle on it the last 2 yrs. I def think certain strain of strep!!

Agree with the above posters. My dd 12 explains it as an autoimmune disorder. Kids, usually just want an answer- this is enough for most. I always tell her that she could just answer simply- (if you had the flu- you tell a friend you had the flu- not a list of your symptoms in graphic detail). For her BFF she has gone into more detail, saying that the autoimmune disorder attacks her brains, causing symptoms such as anxiety.

I am not hijacking this thread- but just want to say something, which I thought of when reading LLM's post. GGggrrr. The medical community is so frustrating with pandas. I agree with LLM that this is an autoimmune disorder as discovered, and like other autoimmune disorders we are not near a cure. But what is so frustrating is that other autoimmune disorders are accepted so readily by doctors (think lupus, MS, RA), even though (like pandas) we do not yet know their cause, the disease takes different courses in different patients, patients respond differently to treatments, and there is usually an umbrella of symptoms.

Both of my kids had PEX at Georgetown three years ago. We prepaid for one, and it was close to 30k. We did get insurance to cover both- but it was a fight. I am a huge believer in PEX. It was a miracle for both of my kids. It was NOT a cure- they still have pandas flares- but it was and end to the episode they were in, and the suffering, which was great, at the time. They responded immediately. I personally think PEX is the best solution for a child in all out crisis mode (as long as antibiotics and steroids have been tried). It will not, however, end your daughter's pandas reactions to viruses- at least this is not what we have seen. Has your daughter ever been given prednisone? Did it help? We have found that jumping on any increase in pandas symptoms helps stop it from getting out of control.

Hey JP Dad- My kids have been the same as yours. Went through life, both having strep once prior to pandas with NO issues. At ages 5.5 and 8.5 they both had strep (barely any symptoms but culture positive) and our pandas journey began. During the first two years after the triggering strep, it seemed anything set them off: cold, virus, illness exposure, etc. Fingers crossed, I feel we have found some footing with this illness. They both still flare with viral, but it is MUCH milder, and usually controlled with abx and advil for a week. Hoping you see a course of exacerbations getting milder with time.

Hi T Anna- Yes! Avoidance can be the compulsion part of ocd. Both of my kids tend to have this be their compulsion for whatever ocd they have. At times (because of ocd) they have avoided: getting dressed, going to the bathroom, washing hands, showering, touching things, going to school, going to afterschool activities, etc. It is not necessarily the meds that made things worse, ocd can be progressive. For my kids it will start with a "worry" and then evolve into a whole panic/ fear/ avoidance situation. I would consider asking Dr T about a steroid burst- prior to trying the IVIG. Good luck! e

Both of my children had plasmapheresis at Georgetown U hospital with Dr Latimer.

Ahhh- perfectionism. My older daughter has that in spades- sometimes working to her advantage (she is a straight A honor student, teachers love her) and sometimes it does not (agonizes over less than perfect test scores and doing things the perfect way). For her this is a personality trait, always here, but somewhat mild- but it morphs into ocd during flare ups. In my experience, most of our teachers have been lovely and supportive, especially once spoken to by me- however, the teacher being kinder, gentler, supportive etc has not really changed my kids fears or reactions. I think that is the nature of ocd. So- what is your dd experiencing? Well maybe tough art teacher, who might give many students pause (yikes- she is not going to think this is good enough)- but most kids get over it- they say "oh well" to themselves, do the best they can, move on and forget about it once the bells ring. For kids like yours, mine and Nancy's- this thought that the art teacher is strict, she is not going to like my work, my work is not good enough, my work is not perfect, is like a seed planted. They do not forget about it, they worry about it, they obsess on it, they eventually try their best to avoid the situation. All of these responses nurture this seed, and the ocd grows into a large unmanageable plant. Since your dd has overcome most of her ocd- this should not be too hard, if you can get a really strong erp therapist on board. I assume the answer is doing lots of art work at home- and purposely messing up. Getting the art teacher in on the therapy, and having her go to art and purposely do sub standard work. Once she does these things several times- it will get easier- she will see she can do junky art work, show it to the teacher, and live. Eventually she may start doing art work happily again- but this is really about getting over the perfectionism and maybe the fear of others reactions to her not being perfect. I think you had a good idea of art at home. I think at home you should re enact exactly what she is afraid of. Give her an assignment of artwork- she needs to do it and purposely mess up. Continue this daily, until it is easy. Then maybe have her do it at home, but not only show to you, show to someone else (father, grandparent, etc). When this is easy, maybe go do this in the art room after school. Every day. When that is easy, maybe a teacher (she likes) could meet in the art room after school and have her do an art assignment (but mess it up). Work up to doing with the art teacher after school, then hopefully in class. I would think this should be able to be accomplished with a good therapist in 3 weeks max- if she is rather healthy pandas wise. I think I would care less if she "messed up" her art assignments all year- just getting her in there and working would be the goal at this point.

Hi Hayley- I agree with pr40 that it never seems effective to force my kids to do anything. However, I do not think our kids have limitations. My kids tend to have remissions and flare ups. We try to keep age appropriate expectations always. We expect them to do anything a "normal" child can do. Sometimes, during a flare, this may not be possible- but we try to be clear that they may be accommodated temporarily while working on getting back to meeting their expectations. Of course, this is coupled with aggressive medical intervention that helps to limit the length of a flare up. Congrats on your daughter doing so well! You should certainly praise and celebrate her for that! I would also be clear with her that she will not be all the way there until she is meeting age appropriate expectations: which include full attendance at school, and bedtime routines. If you have a good psych- they would be helpful here. I would press her for the exact issues with art. If she cannot tell you, maybe she can write it down. Tell her you will work with her to figure out a way to make it work. There may be some ocd issues that need erp- or it may just be the least comfortable class for her, and you might need to give her strategies to deal. Finding out exactly what the fear/ issue is would be important. Remind her how hard school was, and how she is doing so great- and tell her that art WILL be the same. It will be hard at first, but if she braves it, it will get better, and then she will be in full attendance and how awesome would that be? Tell her it has to be dealt with sooner or later, so why not get it behind her now. As far as bedtime, we use melatonin during flares which REALLY helps them relax. Try giving it to her 30 minutes before you want to leave her in bed. As far as extra curriculars, this has been a huge issue for my older dd. She quit ballet and piano, seperately, each during a flare due to ocd. We did work her back into them, and pushed her to participate for a while, but sadly she did lose her LOVE for these activities. It was sad for me, but I got over it, and since she has been doing well, she has tried several new activities which I am happy about. I do think these could be shelved until school is under control- but for her own self esteem it would probably be good if she participated in the activity for some time- to prove to herself she can do it. Alternatively, maybe you could let her pick a different activity. It sounds like your daughter is almost there- which is great!

If I see ANY change in my kids, their attitudes, behaviors, etc- it is 100% of the time a pandas flare. We try to get ahead of it quickly with advil and antibiotics, and coming down swiftly on any behavior issues, and cutting off of complaining/ talking, and re directing hyper activity. Usually for us it will pass in a week or so. Agree with beesknees- exposure to illness can be the culprit. Good luck.

Hey Dut- Sorry you are going through this. Your daughter sounds a little like my younger daughter. Everything I said above pertained to my older daughter, who had ALL OUT school refusal due to overwhelming ocd. Once she faced the fear, we have had no issues with her- it has been a year and a half. My younger daughter also has pandas. She has had some school anxiety as well. For her, it is a little more of an overwhelming anxiety, with a little ocd (not school specific) that is the issue. We do not get all out school refusal from her, but when pandas is flaring it can be hard for her to get out the door due to anxiety causing a spike in ocd, and then separation anxiety from me at school, and some anxiety around activities at school (always different). She is a somewhat (mild) anxious kid normally, and is VERY shy around adults normally- when pandas flares these issues are multiplied by 100, and a little ocd is added in For her we see more of an up and down thing: totally fine, trouble going a couple of days, late a day or two, etc. She is much better these days- K was the worst, 1st and 2nd grade were better but still tough, 3rd and 4th have been MUCH easier. First I have to say I agree with bigmighty- every gain we made with therapy, erp, and parenting strategies has been able to come because of the medical treatment. Steroids coupled with these psych interventions is what worked for us. So I will tell you what approach we took, but #1 for us has been immune modulating/ inflammation treatments (pex, prednisone, advil and zithromax, and/or solumedrol). Here is how we have dealt with it (we did use a local psych who gave us some helpful strategies). This is not ERP, this is mostly for the anxiety and separation anxiety. Firstly- when flaring from pandas, I am a crazed mom about NO late nights. She is in bed, lights out by 8:30. During a flare I give her melatonin (3/4 mg) 20 minutes before I want her asleep- works like a charm. I keep afterschool activities to a bare minimum. I try to minimize stress, rushing, etc. The other thing we did with both girls during these tough times was- I became very tough about missing school. Normally, I would be a compassionate mom who let them take a day when they were not totally sick here and there. Now I am tough. No fever, no vomiting- you go to school. At least a half day. On the weekend- if we see these types of issues- we make sure we get out of the house each day to a public place. For both of my kids, at their worst, pandas started to look a little like agoraphobia- they resisted going to any public place. Letting them have a day off from school, or a day totally at home- makes it harder to get back the next day. My dd's issue is mainly GETTING to school- so I would be totally open to picking her up a half day on days she had a cold, etc- but we actually didn't do that much. Hope this helps- I know how hard it is. Another thing- in the beginning I used to get very stressed if she was late to school, I had to drive her, or she didn't make it. I let that go- that released me from feeling stressed in the morning, and actually if anything had a better outcome for her. In the morning- she gets up early enough to be able to get ready and eat at a leisurely pace. When it is almost time to go to the bus she gets a 10min warning. I give us twice as much time as needed to get to the bus. Avoiding needing to rush is huge. When she had the really rough separation anxiety and was almost not attending school- the psych suggested that I drop her off, and agree to come back and check on her at an agreed time and let her come home no questions asked if she wanted. I could walk to the school and was not working- so I was able to do this. I thought it was a horrible idea, but was desperate, so I tried it. It worked wonderfully. We ended up doing this quite a bit during K- her WORST pandas flare. The thing is, she really loved school- once she was there- the hardest part was the separation. When I came to check on her (I tried to make it during a particularly fun time, recess, lunch, art, etc) she was having fun with her friends and over the worst of the anxiety so she stayed. I think maybe twice she came home, and those were the days where I walked in and she was extremely pale, dark circles under the eyes, and in a daze- the worst of her flare. During second grade, we had moved and lived farther from the school- I really didn't want to drive back at lunch. So- on the worst days (I would offer these accommodations when it looked like I wasn't getting her to school) I would drive her in, and agree to sit outside of the classroom door until she told me I could leave. Again, once she got into the class, and into an activity, she was fine, I would leave (usually around 15 to 20 minutes).

Hey Michelle- I am running out- but just wanted to say that IV steroids (solumedral) alone, has been a literal lifesaver for both of my girls! Good luck!

Hey Nancy- point taken I guess my issue is, if it's not working with a psych- if you are not getting results- you may need to be doing something different. My question to you would be- did you see results fairly quickly? Just to give pandaskid11 some idea of how long to give it..... At usf, I could see major resistance to the exposure, then success, every day. In the end this led up to success on the whole. Certainly, our psych told us the final exposure would be going to school- she just had so many successes under her belt by that point, she knew she could do it.

I do think USF is a good bet for you. They not only help the child, but they help the parents in learning about OCD and how to deal with it. Sometimes the longer ocd is allowed to go on unchecked, the worse and broader the worries get. And worries is putting it mildly, I know, these kids live in fear (like fear for their lives) that cannot be explained unless you have seen it. ERP is exposure and response prevention. For us, we thought we were doing ERP when my dd would not go to school. We had her going for one class, then worked up to adding a second class (mostly with me sitting in the office). I thought we were doing ERP and we were under the guidance of two qualified psychs (one has written popular books on ocd and anxiety in children!). However we really were not doing ERP appropriately, in a way where she was set up for success. When we got to USF, we did appropriate ERP- she had to face the fear - her specific fear was vomiting in class and being embarrassed. (for her I really think the embarrassed part was the stronger portion, and it did somewhat extend to other things like class participation, etc). She had to talk, watch and pretend to vomit , and she had to do all of this in front of multiple strangers daily. It WAS embarrassing. It got easier. So what she internalized was not that bad, embarrassing things wouldn't happen- but that when they did- she could handle it. So- I am really thinking your son has specific fears. I know Nancy said her son's fears were broader- and I get that- but then she did list specific fears. The magic thing about ERP is that you tackle one issue at a time, but when they see themselves work through one issue, sometimes others go away on their own, or, they are easier to work with. When my dd got over the vomit/ embarrass fear- all of her fears of embarrassment pretty much went with it. She went back to school without a hitch, participated in class, and readily tried new things (extra curriculars, etc). As pandas, and I thing even garden variety ocd (if there is such a thing) goes unchecked (medically and/or psychologically) it grows and grows. So one day, they have a fear that if they vomit they might be embarrassed, the next day, if they talk in class they might get it wrong and be embarrassed, the next day if they tripped walking to the board they would be embarrased, the next day the doorknobs might have germs that could cause them to get sick and vomit, etc. It never stops- it is like a snowball. So I am thinking a QUALIFIED (and I do not use that term lightly) therapist will break this down. WHAT bothers him during the day. Make a list. Put the list in order of hardest/ scariest to easiest. (our therapist at usf then totally edited the list from his vast experience). Start working on one thing at a time. As each thing is conquered, move to the next. As the kid sees they can get over one thing, sometimes the next thing is a little easier. At usf they would have the child actually do what he is afraid of. So lets take on of Nancy's examples- her son was afraid he would do something wrong/ miss something and get yelled at by the teacher. So they might- have him watch videos of kids get yelled at by their teacher, have them write a story where they are at school and get yelled at, read this story to the psych, and read it to other pscychs. Maybe go tell the head psych at usf that they broke a chair in the waiting room, etc, etc. I cannot say enough about their methods, about how compassionate they are- their compassion is not necessarily shown in warm fuzzies to the kids, but in putting an end to their suffering and teaching them how to have a normal life. We talked a lot about always maintaining age appropriate expectations, and how to keep talking about it, and how to jump on the ocd if it crops up. If we ever run into an ocd that is impacting our kids lives, I will literally RUN back there as fast as I can. We wasted about five painful months of trying to get her back to school- I wouldn't let that happen again- and hate to see others go through it. When you have a child impacted like this with ocd- you think that no one understands- that (because the local psychs you go to don't solve the issue) they have it really, really bad. Then you go to USF and they are completely unphased. You find out your child is no where near the worst they have seen. It changes everything for you, and it helps to normalize this for your child. Good luck- I wish I could help more.

So sorry for what your are going through. We went through this with my pandas dd two years ago. Very social, high achieving kid who loves school. Literally woke up one December morning two years ago with pandas back full force. Would not leave the house, or see anyone. Would not even let us see her face. Did pretty quick steroid treatment, and things calmed considerably. Would then see people, go to family's houses, and would go shopping (but with lots of anxiety). Still would not go to school. It took a while to get the real fear out of her. I notice both of my kids, if they have a particularly strong ocd- they DO NOT like to share it, it takes patience, coaxing, etc. Eventually it comes out. DD was afraid she would vomit in class, and everyone would laugh at her. But- ocd makes it so much more than that- so scary for them, it was as if I was asking her to go to school naked. She would try her hardest to comply, she would go for a class at a time, and she would come out (like you described) pale, shaky, depressed, etc. She was not able to focus on the learning at all. It was a mess. Finally, we went to USF for ERP therapy (tried local therapy- was not successful). After three weeks of therapy there, the fear was gone, and has not returned since. I think you will not get anywhere until he opens up about his fears. I am sorry to say, I don't really buy that he does not know what he is scared of. I am not a psych- but I will tell you our local psychs were WAY too "nice" to my dd. Believing what she said, etc. At USF they were tough, they were not so "nice"- but in the end- they got her over her fear- so I say who is nicer? For us it was a total waste of time, and possibly detrimental her self esteem (at least in the short term) to have to "talk" with someone about her fears every week- when they were not really giving her the tools to be successful in getting over them. Good luck- it is so tough to watch, I know. I felt, at times, like pandas would steal the very essence of who my kids were. So unfair. BUT- he will get better, of that I have no doubt.

Hi Surfmom- sorry your daughter is suffering.... I cannot speak for your daughter- but my kids do not seem to get over a full blown exacerbation without immune modulating treatment (ie steroids). Have you tried a steroid burst? Others use IVIG, or in more extreme situations pex (both of my girls had this also).

OMG- yes. I LOVED Dr R. He is truly gifted!! He was so funny/ tough/ smart! Wish he was in NJ- totally wanted to take him home! Now I call it- "I am channeling my inner Dr R". Just cannot say enough about how he just simplifies everything/ gives it to you straight/ and doesn't fall for excuses. When he talks about ocd/anxiety/ behavior issues/ etc you can't believe how simple it is- why can't all psychs break it down and solve it. He doesn't sit around talking about it, he fixes it! EVERYONE else we have seen pales in comparison- and we have seen some highly regarded psychs. okay- don't get me going And, Dr Storch is wonderful too!