dcmom

Ok I read your intro. So it certainly does sound like pandas, although pandas is certainly tougher to diagnose after a long history, and without a certain link to illness at time of onset. However, the treatment for pandas is relatively benign, considering the alternatives. I imagine Dr B did a panel of tests to look for infections, immune deficiency, etc. I say "reasonable" batter of tests, only because with my two pandas kids, they have given over 40-50 vials of blood over the last few years (since pandas onset), and almost every result is normal. I sort of wish that Dr B had put your son on a month of Augmentin prior to starting the steroids. That is the way my doc has done it, and I do feel it is a good precaution to "reasonably" be sure any infection is dealt with. Due to the severity and length of time your son has been sick, I am not sure that one steroid burst is going to be the answer. For my kids, at initial onset they had a fairly severe episode. We were not able to get and maintain a satisfactory remission at that time with steroids and abx. We ended up doing plasma pheresis on both, which brought them back to baseline. My kids had only been dealing with pandas about 6 mos when we did pex. Since pex, we have been fortunate enough to maintain a fairly good remission by using steroids when symptoms are flaring. In my personal opinion, your son may need something more, like plasma pheresis, IVIG, IV steroids or even possibly a monthly steroid burst. Is he off of all psych meds? I would think it may be worthwhile considering weaning him off if he is on them- as they don't seem to be working. Pandas is a tough diagnosis- with so much hope. It seems like it takes most families at least a year, or a few episodes, before they sorta figure it out, and feel a bit in control again. We have been on this journey for three years. The first two were tough- but things are calmer now. I am a bit calmer due to losing them, and then recovering them, a few times. I feel a little more confident in the abiltiy to get them back. You will figure this out. My biggest advice is not to panic. I always panic at the first sight of anything (a new symptom? a flare? a bad day? an illness?)- but then I remind myself NOT to DO anything- ride it out for as long as I can- 3 days- before really panicking.

Fighting mom- You should see improvement in any increase in "stuff" when you jump down to lower doses, IMHO. How long has he been on abx? We have always been on abx a minimum of a month, full strength, prior to steroids. Is there any possibility that he is getting sick? If he gets sick, that may negate any effect the steroid has. I am going to read your link now....

Fighting mom- who is your doc? I don't think I am too familiar with your story. Has he been reasonably screened for infections? How long and how much abx has he been on? As for the steroids, they work miracles in my two pandas kids. We do see some issues when they (particularly one of them) are on the Rx. Steroids have side effects, generally. They can make a person anxious, irritable, etc. So for us, sometimes this added emotional junk makes things SEEM much worse for a few days. Think of taking ocd and emotional lability, and then adding on top of this major irritibility, difficulty sleeping, etc. It is not pretty. But- for us this only lasts a few days- then things start to improve dramatically. How long is your burst, how high is the dose? I think I would try to stick it out- if you stop now- you may not see the results that could be coming, and you will be hesitant to try them again. For us they have been the single biggest factor in giving my kids a normal, happy life (so far).

I just want to second what Dedee has said. My daughter was having "tantrums" (less severe than a rage) multiple times daily due to dealing with strep and pandas. It was making life for the family miserable. We all ended up walking on eggshells and trying to avoid the tantrum. I was stressed to the max, and it made it unfair to her sister. We went to usf. Our psych felt before we could successfully address the ocd, we had to get the behavior under control. (usually the tantrum was related to ocd in some way). We were taught a "time out" program- much like a parent uses on a 2 yr old. However, the key to this was that once they were given a time out, there was nothing until they did it. No food, no tv, no toys, and most importantly- no one can talk to them. For my dd this seemed to be the key. She could not stand that I would not speak to her, hug her, etc- until she completed the time out. It worked every time. Then the time in the time out worked as a good calming moment (for all). For the raging, it seems best to do the "time out" in the bedroom, in order to keep everyone safe. However it sounds like the fundamental is the same, and the key is to remove any kind of interaction (positive or negative) with the child. The psych did this with no emotion, and it works best for me when I do the same. Although it seemed to me that this would NOT work, it worked like a charm. Within a week, the tantrums were almost non existent. Now we almost never use time outs- however we do use them on both kids, ages 8 and 11, and they work beautifully. So- the folks at USF are onto something....

Dedee- great news! Please keep us posted!

I agree with LLM- there does need to be balance. With two girls that have pandas induced ocd, the last thing I want to do is inspire tic or bug ocd We spray perimeter areas, shrubs and beds, and rock walls in the yard with permethrin. The kids (and this is where I am relatively lucky to have two fairly "girly" girls) are not allowed in those areas (shrubbery and rock walls, or weedy areas.) We live across the street from a preserved meadow with a large stream. A deer oasis We do not go into that meadow unless there is snow or the ground is frozen, or if they go in any other time it is with sneakers and white socks, we put all clothes immediately in hot water wash and dry, and we do an extremely thorough tic check. I keep our dog out of probably tic areas, and actually most of his outside time is on our deck (luckily he is more of a lap dog). I am hesitant to use much in the way of bug repellant on the girls or their clothing- but if we were to plan a trip into a wooded area, I would. I privately avoid family outings that involve much "in the woods" activities. In the summer we do a lot of pool and beach- ahhh- not tics there. Spring and Fall they are in school, and we always seem to be busy on weekends- so there is not a lot of time. We went girls scout camping this January, and there was snow on the ground- it was great- I think we may plan to camp as a family then next year (in heated cabins)- it is such a relief not to worry about tics. I told my husband the other day, that I cannot imagine that I am going to make it (alive) until they are in adulthood. Even when things are really good (as they are now) there is so much worry.

I buy advil- not sure why- but I really mean it interchangeably with ibuprofen....

Philamom- My kids are 8 and 11 (almost 50, and almost 90 lbs). I give them both the same dosage (probably need to check to see if the older can get more) which is one tablet (200mg) every 4 to 6 hours. Usually I end up dosing 3x per day for a flare up (breakfast, after school with a snack, and bed time). If the flare seems serious enough, I do this for 4 days, and then taper, another 2-3 days on 2 doses per day (morning and night) and another 2-3 days on morning only. This has worked for us really well this year. In the past, I did not feel it worked. The key, I am thinking, is to hit any flare up immediately- that once the "horse is out of the barn" the advil won't get it back in, but can slow or stop any worsening. This has worked 3 times for each this school year. Once for each we had to then proceed to steroids- which, thankfully, worked. I do think that there are larger doses that kids can take, maybe once, or for a day or two- but I would certainly consult a doctor for that.

Hey Fixit- Sorry I have been meaning to post. I will just give you my opinion, from what we have done/ dealt with. I can really comment on the pandas, only. My kids did have some positivity on a lyme antibody test- but at this point we have chosen to believe this was either a past infection or a false positive. (thank you- but I am not interested in commentary on the moment on this, only sharing for Fixit's sake). My kids are relatively reactive to illness or illness exposure. We don't have seasonal allergies- however I know they can be triggering. From my perspective what you are missing, is what has been the key to our staying stable the last year plus.... Steroids and Ibuprofen. My kids overcome illness very typically. What happens then, however, is autoimmunity is triggered. We see remission when we knock out this autoimmunity with immune modulation/ anti inflammatory. We usually try 5 days of fever-type advil dosing. If this does not work we move to steroids. During this school year, each child has had to do steroids once, after a virus. We DO NOT see improvement without one of these treatments. I don't know if this is really helping you, because I know that most llmd's will say steroids are contra-indicated in lyme, I don't know how much literature there is on that, however I do think it is worth investigating the possibility of this type of treatment if your child is in crisis. My kids are ocd, not tics.

All of these symptoms may be a result of strep last month. Could you consider an oral steroid burst?

norcal- Yes- Nancy started at the same dose- 12.5mg/day. Dr Latimer (pandas savvy) started us at this dose. So, possibly you could go up to that now. We did, however, have a hard time sleeping for two weeks- so possibly? starting really low could avoid that? (not sleeping plus pandas is not a great mix)

We made a short attempt at zoloft- and saw no help. It is really hard because you have to go slow, and it can take 6 weeks to work. For us, pandas (while symptomatic) changes so much week to week, that 6 weeks can bring a total change, and we wouldn't know if it was the zoloft. Anyway, dd is maybe 90lbs. Probably was closer to 80 then, it was this time last year. She had just had an exacerbation, and was in relatively good shape, just some stuck ocd. So, she avoided a lot of stuff (that is her compulsion). Our crappy local therapist was not helping, so we asked Dr L if we could try a zoloft "band aid". DD started at 1/2 of that teeny green pill per day. She had a difficult time sleeping for the first few weeks, but that went away. I would say we did the zoloft for almost six weeks. We saw no benefit. I think, around this time she had some ringing in her ears- which FREAKED me out (probably nothing to do with zoloft), and I took her off of ALL meds (including zithromax). I do think momwithocdson will have some thoughts. I would think you would NOT want to titrate up any sooner than six weeks. I am a big believer in psych meds, if they work. It would have been SO nice if zoloft helped. What ultimately helped the stuck ocd was proper therapy at USF. Good luck- keep us posted!!

mommakath- wow! I will pm you our beloved psych's name. I assumed all docs there would be as gifted as he.... He was correct in evaluating that we needed to have a certain level of "compliance" from our dd, before we could really hit the ocd hard. We worked relentlessly on ocd with the other daughter while there, but with the tantrumming daughter- we worked on "compliance". She tantrumed right there- on the floor in the lobby Our doc was really a rock for me. Kept his cool and was tough on her, did not give in, and showed me how to effectively deal with this behavior. I was the first to run to my children's defenses to say- this is not them, they cannot help their behavior. I was half right. It was not them, they did not tantrum, odd or give me ANY problems outside of exacerbation. BUT- they could help their behavior, with MY help, and the help of a trained psych. The "time out" plan we learned (it is naturally slightly tougher than what you did at age 2) gives the parent a "script" which enables you to have a certain level of emotional detachment to the behavior. The time out gives the child time to calm down, and gives the parent time to gather themselves and their thoughts. It is NOT easy at the start, but literally, within a week, my dd knew we meant business. She went from having multiple time outs daily, to once a day, to none. It sounds hard to believe, hard to imagine- but I guess since it worked for me- I am sold

MMWG- We saw a lot of this with both kids. For me, I thought it usually boiled down to some type of ocd- but it sure looks like ODD- so who knows. When my kids are in exacerbation, not only do they have some more visible ocd, but they have anxiety, and control issues. They are NOT flexible, and get stuck on certain thoughts. And when things don't go their way- it means a temper tantrum and all out refusal. Outside of exacerbation, they are lovely, flexible, joyous kids. We have found that some of these "inflexible" type issues are the last to go, and sometimes this or the ocd seems to get "stuck". In my opinion, if you are treating pandas medically (abx, steroids, ivig, whatever), and your son is happy and visibly almost ocd or tic free, it sounds like this issue is a little "stuck", and he needs help getting "unstuck". In my opinion, the kids, the parents, and the whole dang family get some very bad habits from a pandas flare. The kids (especially the young ones, IMHO) "learn" from their pandas. The parents start accommodating, and lower the bar in the home. We had this issue with our youngest last summer. We ended up working a lot on "compliance" with our amazing therapist at USF. He totally "got" this, but in "getting" it, did not give us the freedom to have a lowered bar. We learned to use "time out" behavior with amazing success with our daughter who was post- strep at the time, and tantruming and controlling our family life. We had let the situation get a bit out of control, because post- strep she was suffering with ocd. We had to abruptly change course, and we no longer accommodate any tantrums, fresh talk, hitting, or non-cooperation. It is not easy at first, but when the kids know you mean business, the relent a little. I am in a rush now, but wanted to reach out to you. You can search my posts, as I have posted about this quite a few times since last summer. It is something I have become very passionate about. I am a really compassionate mom, and love my kids, so it was natural to me to accommodate them a bit during episodes. The only thing is the accommodations snowball, and end up being no good for anyone, especially the pandas child. I am happy to post more, trade emails, or talk on the phone, if you want any more info about how we handled things. PM me.

We give as little as possible: probiotics (one takes theralac, the other pearls), vit D/calcium, and nightly melatonin (less than 1 mg).

Ellen- thank you for this. The menigococcal vax is one that we will be looking at in the near future. I don't want to do it, but as we get farther from our kids worst- I feel more like I might consider it. Thank you for the reminder of what is at stake. Please let your son know we are all pulling for him. He deserves more than this- and I know he will fully recover- hopefully soon. I am thinking of you, and hope you are managing the best that you can.

London- Try to breathe I have two kids who were both, at different times, severely affected by pandas. They are now back to "normal". I do not think, as long as you are working on treatment, that there will be "permanent damage". I haven't read your other posts, are you in London? Just wondering if there is a pandas specialist you can see. My kids did daily zithromax for a long time, not only is it anti bacterial, it is also immune modulating. We have found ibuprofen to be a great weapon in our first line of defense against pandas. If your son has symptoms, or if you see any uptick in symptoms, I would consider 5 days of regular dosing of advil (as if there were fever). And see if that helps. I do think there are a few parents here whose kids take longer term a single daily dose of ibuprofen (we have not had to do this).

Amy- I have stopped antibiotics altogether for my 11 yr old, and am down to 2 days per week of zith for my 8 yr old. Both were on daily zith since diagnosis, for a total of about two years. Last year, while they were both on zith plus augmentin, they contracted strep! This made me come to terms with the fact that we absolutely cannot keep them from getting sick. We treated the strep with clindamycin, and followed up with IV steroids. We avoided disaster. This experience made me really question why we were doing the antibiotics, and if the "reward" for antibiotics were still worth the "risk". What if we could be off antibiotics (in a perfect world this is obviously the healthy choice) and respond fast to pandas flare ups? Last summer, fed up with all the pills, I took them off of everything. Not only did they not backslide, they flourished! The only pills they took for the summer were probiotics. This fall, I was a little "chicken", so I put them on zith 2x per week. So far this school year (fingers crossed) they both have had 2 viral colds, and that is it. Two months ago, I took the older one off all antibiotics (due to some concerns it was bothering her stomach), and I have to say she has been doing really, really well. Now, if we see any increase in pandas issues, we give them daily zith plus regular advil dosing for 5 days. I cannot be sure that it has worked, but, we have used this protocol probably 3x with each kid, and each time they have gotten better (would they have gotten better w/o this protocol- that is what I do not know). Right now my younger one is mildly symptomatic She just got over a cold, and now my husband and I both have a bad cold. So she is obviously reacting. I will put her on the zith/advil protocol and hope things get better. If they do not, we will do a steroid burst. When she is better, she will probably come off of all antibiotics. In some ways I think that if the kids do well off of the antibiotics, then maybe their body is not used the antibiotics, and they can be more effective (as an immune modulator anyway) when used. Just my 2 cents. But, this has been the best year since their diagnosis, and it is also the year they have been on the least antibiotics. Good luck with your choice- I know it is not easy!

I echo what Deedee says. This whole situation sucks, and without money it is much worse. I have two pandas kids- diagnosed at age 5 and 8. They are (fingers crossed) doing really well now, living normal lives. We have, for sure, been affected negatively by the cost of this illness. However, in retrospect, seeing how my kids were suffering, and how wonderful they are now- I would have sold my house and moved to an apartment. There is no price for your kid's sanity. (my kids were primarily ocd). This is tough advice- but that is because we have all been there, and we know how important appropriate aggressive treatment is. And, frankly, seeing the right doc now, will end up saving a lot of money and heartache down the line. Good luck. PS: there are options such as- charitable organizations that will fly your child to appointments, and possibly ronald mcdonald houses near doctors where you can stay for free. You can figure this out.

colleen- I don't have a lot to offer, but I wanted to say how sorry I am that your son, and your family is going through this I am heartbroken for you. I have two suggestions for you to try to get in with a doc quickly. I think you are in the Virginia area- but I am not sure. I would consider seeing Dr Paul Beals in Maryland, or contacting Dr Brian Fallon at Columbia U in NY for a referral. I would imagine making sure you get him on the correct abx asap would be important. Good luck.

http://www.nytimes.com/pages/magazine/index.html

Actually, the strep "experts" consider a recurrent infection (within a month I think) actually not recurrent, but the SAME infection never gone. What this sounds like to me is that 1/3 of children are improperly treated for strep, maybe because the antibiotic prescribed is not sufficient.

Sweet cheeks- I guess I would get him to the doctor. The rash could be several things, and possibly even related to strep. Did your son have strep or a sore throat. If you do think he had strep I would be very concerned about having stopped the abx early. I would try to get him on at least a full course of something like zithromax or omnicef. I would also consider a week of regular advil dosing, and seeing about finding a good therapist to do ERP for the ocd. Good luck!

Welcome Virginia mom. Sorry you are here While my name is DC Mom, I moved from DC to NJ last year- so am no longer in your area, but I can tell you there are lots of wonderful, supportive moms in the DC metro area- I urge you to join their support group. I also urge you to keep your appt with Dr Latimer, if possible. She saw us through some really hard times. She is not perfect- but she is extremely compassionate, and will be by your side until your son is well. We found it VERY easy to work with her, especially living in her area. Until my kids were stable, we saw her monthly- which was wonderful. Sounds like you are on the right path!

will pm you!