dcmom

Both of my girls have had two steroid bursts. Both bursts were the month long, tapering, doses. Both had one dose that worked REALLY well, and gave us longer term results. Both also had a previous burst that worked, if less so, but then afterwards went downhill fast. I think the downward spiral was due to illness and/or exposure- but it is hard to be sure. They are both on another burst now. Of course I am anxious. I read this in the Sydenham's Chorea treatment section of Wemove.org, and plan to do this with them to prevent any post-steroid issues if possible. As a side note, FWIW, our doc did say it takes longer than their course of steroids to become immunosuppressed. " Steroid therapy should be limited in duration and dosage levels to help reduce adverse effects. In addition, such therapy should not be abruptly discontinued; rather, dosage levels should be gradually reduced (tapered down). As steroid dosage levels are tapered, physicians may recommend adding salicylates to help prevent a possible "rebound" of inflammatory symptoms. Salicylate therapy may be continued for approximately 2 to 4 weeks following the cessation of steroid administration" Ibuprofin is a salicylate.

I have been a vegan for the last year or so (lately slipping back into vegetarianism with just not enough time to cook). I am not a big cheese eater, and don't really like the "substitute foods". You have to watch, many of them DO contain animal or dairy ingredients and/or carageenan (which itself is a no no for intenstinal inflammation). I haven't found a substitute cheese "worth" eating. I do LOVE so delicious chocolate covered coconut milk ice cream bars, though! You CAN find lots of great vegan recipes today, though- and being near a whole foods is essential. Keep us posted on how this goes- it HAS to be hard for kids!

Amber, I just saw your post. Just wanted to let you know to be patient and persistant. My dd was only sick with pandas and strep for four weeks, and it took her over 30 days on full strength antibiotics to improve. My older daughter calmed down with antibiotics, but it was not a major miracle for her. For some kids antibiotics seem to do the trick, for others, more medical intervention is needed. If the antibiotics don't work miracles, it does not mean it isn't pandas- if they worked quickly for all kids- we really wouldn't need this forum. Best wishes....

Thanks for all of the encouraging words... even though things are really good at my house, compared to how they have been, I am at a little bit of a low point. Maybe it is because it is the first time I have had a few days (when the kids are at school) to myself in a long time. Thankfully, Caroline is really doing well medically. I think my frustration is in that I feel she is not trying to fight the ocd. I understand what she has been through, I can't imagine what it was like, we let all of the rules go when she was sick, and spent every minute calming and caring for her- happily. It is not fair she had to go through this, and it is not fair she has to fight just to be able to do ordinary things- but I can't take that away, I can't make that better. But, I am trying to figure out how to motivate her to want to try to take her life back. I am afraid if I don't push her, if the therapist doesn't push her, and she doesn't push herself, that she won't continue to make progress. The ocd that is left, may be residual. She mostly tries to avoid uncomfortable situations, but, when it turns out she is pushed into them she does well- so I think it is more the memory of the crippling ocd/fear, than the fact that it is still there. I am really good at cuddling them up, and making everything better in the bad times- but I do think she is past that, and I don't have so much practice at being really firm. fuel for all- I know what you mean about tough love making things worse- it NEVER worked for my little one. It certainly didn't work for Caroline at her worst, but this morning- when I was losing my patience and conveying that, she did respond. You know how kids really do like boundaries? I think that is what was going on, maybe she needs to know that we won't accept that this is how things will stay for her. tiredmom- thanks- your post was cute- but Caroline can't sleep without me, and had a REALLY hard time staying with my mom babysitting in the afternoon last weekend- there is NO way of an overnight or even an out to dinner at this point Vickie and Meg's mom- I think maybe we are at a turning point, and maybe I sense it, and therein lies my frustration. Hopefully we will see the big strides as well! SFMom- I totally know how you feel about having difficulty getting work done. When the kids have a bad day, it just zaps my energy for the next few days. It would be an understatement to say pandas has changed ALL of our lives. We are in the process about moving back to our hometown of NJ- but I FEEL so different, I feel like it will be really hard to go back to my old life- because so much has changed. My values, my direction, everything has changed, and really the only people that know or understand that are those on the forum, and my parents (who have been an unbelievable support).

I know the fear of the jinx factor I am SO sorry this is happening again. I used a steroid burst for my dd post flu- with really good long lasting results. Her pandas symptoms did not start until 12 hours after her fever subsided, so I kinda knew she was better. My marker is to wait 3 days, see if it is a full blown episode, or a blip in reaction to possible exposure (which my one dd has). So- I am sure it is so hard since he is older. I might take him to the doc for an exam to rule out strep, sinus, etc. Maybe wait another day, and then I would go for the burst. How long is the burst? We did a month long tapering dose- she had the flu in November, and (please no jinx) has been doing relatively (ok i will understate my feelings about it) well since. Let us know what you decide...

I am planning an update on my girls soon, both on steroids now, so want to see where it all ends up when the rx is done.... But in the meantime, I need some help and advice. I am not patting myself on the back, but, I am a VERY patient mother. I have been there for my girls every second of the last year plus, remaining calm, positive and encouraging. I don't yell, criticize or over react. I know they are and have been sick, and are suffering.... But the last few days, I am starting to lose it. My patience (I don' t know why) feels like it has run out. I am tired of ocd running MY life. Julia, age 6, is actually doing really well. Caroline, age 9, who was the second one to be diagnosed it the one i am losing patience with. She had pex six weeks ago, and improved tremendously, but the ocd is still there. To be honest, I can't help but feel she is just not fighting for herself. She also has separation anxiety- so since February- she sleeps with my (in dh and my bed) every night. So- it is lights off for ME by 9pm every night. She is very demanding about it. I can't read, or use my Iphone- or she refuses to try to sleep. My husband and I haven't had more then a couple of minutes (usually on the phone) a day to have adult conversation. She can't (because of ocd) have her sister in bed with us- this has all caused Julia to have some night time issues. Last night Julia had a nightmare, and came in. I let her get in bed. This morning when Caroline woke up she was furious- demanding Julia leave, calling her names, and flicking her on the head. So, this is just one example of her issues. There are others. When something is bothering her (ocd/anxiety) she is mean; mean to me, and mean to Julia. I understand that Caroline has ocd, and I am trying to be patient. But maybe I am too patient. I don't see her putting an effort in to getting better. She is seeing a therapist, and they are working on stuff, but they started with the easiest first. She seems too much like she is just going through the motions, not really trying. Not motivated. They have been working on the same issue (germs - touching things) for two weeks. Am I enabling her? Should I allow her to let her life be run by ocd, but refuse to let the rest of the family's life be run that way? Can tough love be helpful? I feel like now is the time I need to step up and be in charge, NOT ocd. Eating out has been an issue for her. It was something the therapist wanted her to work on, but she suggested just eat a piece of bread- I was thinking- a piece of bread- this weekend we HAD to be out at lunchtime. And she just did it- she ordered a sandwich and ate the whole thing- only slightly nervous. I think the grip of ocd has loosened- but her mode of operation is avoidance (it always has been even prior to pandas). It is easier for her to avoid doing something that is hard- but in the end, eating out wasn't even that hard (I could tell because she was having a good time- not on edge). This morning- I was in a mood- so I started talking to her about ballet (another ocd thing), and how I found a program in NJ during the summer. I just talked like she was doing it- no options, and I swear I could sense part of her accepting it, even though she said she didn't want to do it. So help- when do I say enough- I need my evenings back, DH and I need our bed back, and SHE NEEDS her LIFE back. I need ME to be in charge, not ocd. Sorry for the rant- please offer suggestions...

Thank you for your update! I am so glad you are seeing improvement! Bravo for taking (somewhat) drastic steps to help your daughter heal, and have a normal life. I often think homeschooling is what my kids need. School can feel like such a rat race sometimes, up early, in school all day, homework, and then maybe an activity. My kids both seem to need more sleep than they used to as well, and always feel like I am waking them before they are ready on school mornings. I would love to give them a day off here and there, but for them with ocd it is a slippery slope, so we try to get there everyday. No matter what I do, someone at school is ALWAYS being diagnosed with strep. My kids both REALLY love and thrive at school, that is why I keep them there. But, I have been lucky with our school- I can take them out for a week at a time (when strep is going around), and the teachers work with me. I can't wait for the summer! Do you think it is the exposure to strep that was causing the pandas and asthma? Please continue to update us!

Consider trying Dr Freedenfeld at Stockton Family practice. He is known for his treatment of Autism, but also told me he works with lots of pandas kids. He is not a pediatrician, though, it is a Family practice. I don't know if he does IVIG, however. If possible, maybe get to Dr B in Connecticut- he does treat pandas, and immune def with ivig. Have you had an immune work up?

EAMom and Buster, SO sorry your daughter is going through this again. Really glad to hear it is not as bad as initial episode, though. Pandas is so rough. I have a fourth grader who is battling with pandas ocd also. She had pex and is improved, but not to where she should be. It is a rough age, where they should be the wonderful combination of still innocent and worry free, yet blossoming with new ideas and independence. Pandas can really zap all that. It is so hard to see my daughter more anxious about separating from me now than she was in preschool. Hoping that we are ALL in a better place when summer arrives. I know I (and my kids) can use a break from the everyday of school, just to hang out and enjoy the simple things in life. Glad you are moving quickly on treatment, the combination of giving it a little time- but yet knowing not to give it too long, seems to me to be key in fighting pandas. Thank you for the update, please stay positive, and keep us informed....

Hhmm- the code the Dr used was something like post infectious encephelitis- I am sorry to say I can't remember exactly. She told me that was the code for pandas. She made no secret of pandas, and the insurance company's initial denial specified pandas. In the end we were approved- for both girls.

wornout- I am so sorry you are going through this- but glad to hear you are seeing some improvement. We are just coming off of battling Aetna, and I don't know if I have a lot of advice, except to be extremely persistant. We were battling for pex, which they also do not cover for pandas. We did eventually get approval. I basically called every single day. I would try to talk to a supervisor, and aim to not get off the phone until they would explain what and when the next step would take place. They have something like a three level appeal process. Our doctor also had several heated conversations with them, and put in writing that they were jeopardizing my daughter's health by delaying treatment. DH's company is self insured, so he also got his HR dept involved- ultimately it would have been the company's decision. It took 3 weeks to get approval- which we did get after we paid for the procedure out of pocket. Don't give up- it is all BS. It is extremely painful to have to spend time fighting with the insurance company, when you should be taking care of your sick child, the rest of your family, and yourself. I am typically not a person who gets angry- but I have a hard time revisiting the BS with the insurance company without feeling a lot of anger- which generally makes me uncomfortable. In the end- (luckily our hospital/docs were in network) Aetna only had to pay $5k on a $29k bill. This is the amt of money they were willing to delay treatment and jeopardize daughter's health for. Unbelievable.

Tired Mom- hugs to you and your family. Be patient (which I know is impossible), it can take time to see the effects of the burst. How long is the burst for?

Stephanie- My younger daughter definately responds to the steroids after the first or second dose. For her, by day 4, she usually has a remission from almost all symptoms. That IS faster than most kids- but it does happen. Hope this is the start of healing...

Stephanie- I am here! My kids were patients of Dr L's, we were away for the weekend. My kids are doing really well, though not 100%, and not cured. I read the forum every day, but have tried to limit my time and my posting to focus on life for a bit. My girls both had PEX, and that was a lifesaver for them. They still suffer from some ocd, in fact both are on a steroid burst now to see if we can push the progress a bit. I can't say enough about Dr L. She has saved my kids and my family. She has fought for them with our insurance co. Sure, she is busy and not perfect- but when we needed her- she really was there for us. I plan to post an update on both girls in a month or two, after we are a few weeks out from the current steroid bursts.

Can you discuss your regimen for the kids, again? Thanks!! quote name='momto2pandas' date='Apr 17 2010, 12:12 PM' post='63775'] I don't think it's generally necessary to remove everything to get the Cunningham test done, but I suspected that we were getting a ton of benefit from our regime (just based on my experience with/without it), so I removed it to get a better sense for what we were "really" like in the absenc e of it. I have to admit, though, that letting the kids "crash" in this way, even for a few days, was kind of nighmarish and I almost bailed on it. I cKannot imagine life if we really had to live with all 3 of us in that state. In the paper that Cunningham's lab showed me, the very highest PANDAS child had a CamK of nearly 200 - so about a tie with my ds3. Above that threshold, everyone else had Sydenham's Chorea. So both of my boys and I are in the upper limit PANDAS/low-mid SC range.

It took my dd 30 days on full strength (for her size) zithromax for my dd to respond. At that point her symptoms totally remitted. She had only been sick with pandas for 4 weeks. I don't want to scare you, but I would research the steroid bursts. For some, the antibiotics do the trick. For others (like my girls) it is necessary to move on to steroids. I find in the dealing with pandas in two daughters for over a year, preparation is key. Always look to the next step. If this doesn't work, what will we do? If they have another episode, what is our game plan? If they continue with low level symptoms for a long period of time, how aggressive do we want to be? Explore these options on the forum and with your doctor. Hopefully, you will never have to take that next step. But, as you know, when pandas hits it is all consuming and devastating, so it helps to have a plan. So, my advice, give the antibiotics a month to work. While you are waiting, research your next move. The waiting is SO hard. I am there right now, with one of my girls

This is really hard But, I agree with Kayanne. A year ago, when dd was first sick, I was at the end of my rope. Before we even read about pandas, my dh and I looked at each other (in a moment of, shall we say difficulty with dd) and then said to each other. This is different, there is something really wrong, this is not a behavoir issue. I have been on a long road, with both girls now pandas. And I have to say, my mentality had to change (at least for now, and for however long it takes). I am the mother of two children who are sick. Others might not see it, the teacher might not see it, but this is how it is. Their needs are different, and my expectations are different. I don't sweat the small stuff, I don't demand that their beds are made every day or that their clothes always match, I have eased up and de stressed about academics, we snack, we eat in front of the tv and we go to school late if we need to. Priority number one is their happiness and their health, period. That being said, I am working on getting tougher in other areas to help fight the ocd. We go out every day, stay active, get dressed in the morning. They don't get to decide not to go to an extra curricular because they don't feel like it that day (but I will stay, or they can leave early if they really need to). We are working on an ERP program. It is tiring. I liked the organized, school focused, Mom that I was before. But, right now, that is not what my kids need. Oh, and I am trying to put taking care of myself somewhere on the priority list (since pandas, I haven' exercised, have gained weight, haven't shopped much for clothing, etc)- this cannot wait until they are well. Taking care of myself will help me take care of them. I do not always succeed in this stuff, I have my moments. But this is my goal, anyway.

Isabel- I think trying the Rifampin is good. Is there a possibility the ear infections are viral? Best wishes for healing...

Kayanne- I will be interested in any responses. I am planning on putting a 504 in place for both girls next year. My main need that I forsee now is in absences and lates. I am hoping that can be covered. What I have seen in my dd in the last year, is that when she gets sick or exposed to strep, she tends to have a mild flare and may need additional days out of school. Also, when coming out of a mild flare, mornings can be tough- it can be much easier for her if she goes in 1/2 hour late. Does anyone know if accomodation for more frequent absences can be put in a 504? (I haven't started doing my homework yet) Thanks!

Fixit- Both daughters eventually became fairly debilitated by pandas. DD age 6 was first, last March. Overnight she woke with excessive wiping after toileting. The next four weeks snowballed, until she couldn't dress, couldn't go to school, barely ate, couldn't sleep, and spent hours in the bathroom. We got her back with antibiotics, an then it was up and down for almost 6 mos. When we proceded to pex, she was in decent shape already. Immediately post pex, ALL symptoms totally subsided (even some schoolwork issues and cognitive inflexibility that we hadn't really attributed to pandas). She got the flu the following month, had a flare in symptoms that was controlled with steroids, and is now doing well. We haven't gotten back to that total resolution in symptoms, yet. She is a canary for strep, when exposed I see a marked increase in issues. She is mainly left with some sensory issues with clothing, and a dislike around using the potty. Thankfully, she is happy, and these issues do not have an impact on the way she lives her life. This summer we are planning erp with the clothing stuff. DD, age 9, had a milder onset last March as well. We didn't catch it: stomach aches, anxiety, oppositional behavoir and ocd (which she hid). She remained functional until she also had the flu this fall. After that she started to spiral down with ocd. We did a steroid burst in December- it was amazing- she was the sweet happy confident kid we hadn't seen in almost a year. Post steroid burst, she got a cold, and went off a cliff. Out of school, major ocd, not eating, sleeping with me, major anxiety all around, anger, major depression, manic behavior, aggressive anger, etc. By the time we got her to the doctor- she felt we needed pex immediately. She had pex the first week of March. She is about 5 weeks post pex. She was in way worse shape than her sister at time of procedure. She has not had the total resolution of symptoms at all, however a major improvement. She is back to school, and able to enjoy things. She still has lots of the ocd stuff- but not quite to the extreme. I am really hoping things resolve for her soon. She is in therapy. We see her Dr this week. PEX was a miracle for both of my girls. It gave them their life back, and their ability to take control over the ocd (while some of the ocd just went away completely on its own). I know it may be temporary, we will do it again if needed. We hope to "manage" pandas with antibiotics and steroid bursts. I do wonder if IVIG would cure them- I am not convinced, yet.

faith- I completely understand your search for answers. I can 't remember- did you have the Cunningham test done? I will just add my 2 cents. I had pex done on both of my girls. One in October, one last month. I have never, not for one minute, regretted it. In fact, I will do it for them again, need be. They are not where I want them to be, but pex gave each of them a HUGE improvement. We will (hopefully if things remain calm) re evaluate after they are one year post pex. I really wanted to give them the chance to beat this without using donor antibodies. I guess only time will tell. It still hangs over my head- the fact that Dr K is so adamantly for IVIG. I wonder if my girls need it. But, right now, I can't stir the pot, so to speak. I am hoping that we will hear more long term success stories from IVIG in the next 6 mos, which will give me the confidence to go that route should we need to. I know some on the board have had recent success, but I want to see a year of sustained improvement at a minimum. It is a much harder choice to make when your kids are relatively happy and funcitonal. That being said, we all want our kids to funtion at their potential. Such hard questions and choices. Was I even a parent before pandas (it was so easy then- like a fairytale)?

I totally agree with Vickie. I think all pandas cases are probably sudden onset. It is just that some onsets are milder, and at a stage where the issues can be passed off (for the time) as developmental. Then over time, without proper treatment, with new illnesses, things worsen. When a parent looks back, it seems the child always had issues. I don't think anyone wants to exclude these kids from being treated, or being part of the "club". I do think, however, as far as research studies go, it is important for the doctors to set some clear parameters- in order for the study to be accepted in peer review. (but hey, I am not a scientist).

Another thought- pandas has extremely sensitized my kids, in different ways. One is extremely overly sensitive emotionally, and overly sensitive to anything going on in her stomach- normal digestion and hunger feel like pain to her (she is better from that right now). My little one has the typical sensory issues to clothing. Possibly- he is overly sensitive to some static electricity. I would try the copper bracelet- if there is any psychological component, maybe that would help...

Tpotter- How long after pex did it take for all symptoms to improve? What happened to cause things to get worse again? How long has it been since your original pex? Have you tried steroids? thanx

momoftwins- SO sorry. Is there any way to try the pex, or ivig again? Certainly stress can worsen symptoms. I would imagine the procedure (or the thought of it) completely stressed your son out- and now he is probably depressed that he didn't get through it, and thinking he won't get better. All of this on top of the normal ocd and pandas issues. How many treatments did he have?