dcmom

Agreed- we do NOT mix ibuprofen and steroids.

Hi Momto2- This is NOT as good as it gets. I think, with aggressive management, you should expect 90% and better, 90% of the time. I think you need to get with a pandas specialist- someone willing to treat aggressively. Your son is on lots of meds- but he is not well? Makes me think they should all be re evaluated. It looks like you are treating him for allergies? Is this the case? We don't have allergies, so I cannot comment, but I know they can trigger some kids. I don't understand the every 2 month flare- are you seeing triggers to this flare up, or does it seem like a cycle? This may point to a chronic infection. My girls originally recovered with antibiotics only. Since that first time, however, we have needed something more: steroids and one time pex. Now- they tend to flare up if sick- but we try to jump on it quickly with steroids- and they are ok. so my advice fwiw- 1- get with a pandas specialist 2- test for chronic infection 3- if no chronic infection, treat with immune modulator- steroids, ivig, pex 4- manage aggressively, figure out how to deal with allergies (if present)

Leg muscle cramps can be a sign of low potassium. Runners get this, I had this happen when I was pregnant. I am sure there are other causes- but just wanted to throw this out there...

browneyes- I am so sorry you are in crisis. We have found IV solumedral at 7mg/kg every 12 hours for at least 2 doses to be the most beneficial form of steroid for crisis. We have used the dose pow pow suggested (that would be my 11yr olds month long taper dose)- but have had mixed results when truly in crisis (major, debilitating, ocd and friends)- that Rx has worked better for us in a more moderate flare up.

First- stay calm! Second- change the time that you give him the antibiotic, and see if he still has the same reaction. Some kids have more pandas symptoms at certain times of the day (tired, etc). Third- If the flare up continues, consider switching up antibiotics. There are some strains of strep found to be resistant to zithromax. Consider a course of clindamycin. When you say his strep symptoms are getting worse, I assume you mean pandas symptoms (tics, ocd, moodiness, etc) and not actual strep symptoms (sore throat, fever, etc)? My kids do not generally get better on antibiotics alone, however most of the time advil will take the edge off (although not during their worst episode). We do not see a worsening with antibiotics. I would be SURE that the worsening correlates to the antibiotics by trying the changes above. If these changes prove the correlation, then I would do as the others advice and look into lyme disease.

My older daughter forget almost all of the bad things that happened in exacerbation- my younger does not. I tend to think it is the psychology of the brain protecting themself from a memory that is too painful. We do sometimes share stories with her- I don't want it to become a totally forgotten secret -

pow pow- My daughter turned 6 a few months prior to PEX. She was little But it worked AMAZINGLY well. We saw changes IN the hospital, and she was 110% by the time we got home. It was SO worth it!

pow pow- My dd suffered with this very noticeably during her initial episode. She was 5 at the time. During episode- she could not recite the days of the week (I spent two months working on that with her), she could not write from 1 to 100 (the teens were backward, and past that it was somwhat of a jumble), and she could not be given multi step directions (go get dressed, brush your teeth, and find your book- she would do one- then look lost and say- did you want me to do something else?). The DAY she came home from the hospital for having PEX- this all was gone! She recited the alphabet with no prompting, wrote from 1 to 100 PERFECTLY (when before 50 of those numbers would be wrong) and quickly, and read a stack of six books to my mom (she had been resistant to reading). So- I KNOW this kind of thing can come from pandas. She has not had major issues with this, since, thankfully!

My daughter was in public middle school at the time of her school refusal episode. Our school was wonderfully supportive. Within 5 days they put her on homebound instruction. Her classroom teachers came to our house once per week to give her instruction. Her guidance counselor coordinated it all, and the pre determined to grade her as pass or fail. She did not have cognitive difficulties, so keeping up was not an issue. I am sure if she had the math problems, they would have accomodated. I would think they would have worked at her pace, and possibly we could have employed a summer tutor to catch her up. I would really think the school would have made an effort for her to be passed along with her class. That was our first year in our district! This year she was moved up to the honors program and has maintained straight A's and nearly perfect attendance (fingers crossed). My younger had her major episode in Kindergarten. She DEFINITELY had cognitive issues: short term memory, math, and dislike of reading. When she went into remission, she actually did not have to catch up. She had somehow absorbed it all! I think the issue was in the getting it from her brain to the paper- or out- not that she didn't get it- if that makes any sense. So, once she was in remission, she was successfully able to show what she actually knew all along. Of course K is A LOT different than middle school- but I hope this gives you some hope! In the short and long term the most important things are: your son's health, his self confidence and self esteem, his willingness to face his fears/ stay calm/ and put in effort, his grades are WAY last. Nothing like PANDAS to create a little perspective!

Hey Linda- ugh-I have been there. I haven't read the whole thread, I am sure you have gotten great advice! Here is my 2 cents FWIW. There are a few important things right now, the least of which is his math ability. Firstly, you need to get to a pandas doc to get him treated properly, medically. Until you do that, it is a hard road for both of you. This means some bloodwork, some antibiocs (maybe a change), and probably prednisone and/or ivig. Secondly, you probably need to get a rush 504 plan in place. You need to ask for the necessary accomodations. This may mean- no math homework and an abbreviated day. However it is very important that you work seriously to get him into school. It is not so important what his grades are. For us, we had lots of documentation for my kids: neurologist and a detailed letter from a psych- and the school gave us NO trouble. My kids did not have so much cognitive issues, but school refusal due to ocd/ anxiety. Good luck- it will get easier!

MMC- we did pex for my daughter. She also got the flu (probable H1N1) about a month later. We gave her tamiflu instantly. Within 24 hours of her fever normalizing, she started spiraling quickly into a pandas episode. Within 48 hours of that, we gave her a month long steroid burst. She was back to about 95% remission within 2 days. I think pex is awesome, and would do it again in a minute- but our docs have to be aggressive in managing pandas after any of these procedures.

It might be worth a course of clindamycin for you and your son- this is the abx that is used to treat "carriers". We had good luck with it last spring when my daughters had strep.

Shannon- You can call Dr Storch- he is a psychologist in charge of the therapy program there. You can stay at the Ronald Mcdonald house (we did- wonderful experience) during therapy. If you could do this concurrent with seeing Dr Murphy- or even set it up for this summer- you would be in really good shape come Sept. Good luck!

Hi Lynn- From my parent's perspective- this looks like your son has had strep in the not so distant past. Were you aware of an infection? Has he been cultured? Has he been treated for strep? This MAY be good news, as you MAY have found a smoking gun. Dr T will know what to do

Hey Shannon- Do you live in FL? If so, I highly recommend doing therapy with Dr Storch's group at USF. Therapy works best in conjunction with medical treatment. That being said, your son sounds stable, so it may be a good time to start therapy (or at least find a really good therapist). A good therapist will know how hard to push your son, it can be done in baby steps. He should really start taking steps toward getting out into the world. The longer his ocd is accommodated, the more stuck it gets. I would try to start slowly, and then when he is being treated medically, push him harder. I think Dr M treats mainly with antibiotics- which is not always the magic bullet for all kids- so I think it is important to at least set the expectation for him that the goal is getting back to his "normal" life and age appropriate behavior. You can work on one issue at a time, baby steps- start with things that you have a reasonable expectation he can be successful at. Reward him. Have you tried Ibuprofen? It helps some pandas kids- takes the edge off. I would consider dosing 4x a day for up to 5 days, and then backing down to once per day.

No- we see Dr T and Dr L. I would have him cultured. A virus/ cold can trigger pandas in some (mine)- if this happens I would consider the advil....

My best advice would be to stay calm. Many things are actually coincidence- do not panic- wait until you see a pattern. It is reasonable to take him to the ped for a swab. Many of our kids seem to have fairly asymptomatic strep. Fatigue, stomach ache, and headache are all strep symptoms. Get a culture, not just a rapid test. If he is negative, wait a few days and follow the protocol of Doc B, make sure it is not an off day, or that he is coming down with a cold or virus. If symptoms persist- then I would be more concerned. I have 2 kids with pandas, diagnosed 3 yrs ago at onset. I have found it to be helpful to always wait up to 3 days (unless the SOT really hits the fan) to be sure I am actually seeing what is happening. Also- ibuprofen is a pandas mom's friend I would certainly consult Dr B- but in the even that you saw a flare up in him, I would think 5 days of advil dosing, 2-3 times per day, would be a relatively benign way of treating. good luck!

Thanks philly You know, for someone with ocd- they will not let the waitress wrap their food, BUT this will snowball and eventually they won't be able to eat out at all (chef, waitress, etc, preparing their foods). We ALL have thoughts of Ew- that might be gross, but we allow our mind to LET IT GO, the ocd mind sometimes CANNOT and will not let it go, and that is why this causes trouble. My dd did have some germ stuff on initial onset- started with not touching elevator buttons, bathroom door handles, and other stuff in public. Then it moved to refusal to use any public bathroom (including school). Then, she had pex. How long until it developed into not being able to leave the house due to germs. I tell her- germs are everywhere- the reality is you cannot avoid them, and it really would not be healthy to. Our psych told her an exposure he does for people with germ ocd is to put their hands in the toilet water, and then eat their lunch without washing their hands. Gross, right? She was so fascinated by this. The reality is- you will get sick from the germ you are not aware of, and very likely not from sharing a soda with a friend. I want my dd to be able to order a huge brownie sundae and share with her friends, or her boyfriend (way in the future), like I did- without thinking twice. I don't want her to wash her hands 15 times a day. I want her to eat her sandwich if it falls on the floor. I want her to be able to eat something from a greasy street vendor. That is life, that is good life-

OMG- I started reading your post, and could barely get through it- making me nauseous! I have no advice to give you, other than maybe you could go out to dinner, or have her over, rather than eating there. Yucko. Just as a note from an ocd parent, however- it is important to keep things "reasonable" and real. In our house we TYPICALLY do not share foods, we don't double dip, etc- BUT we will occasionally ie- someone gets an icecream cone, another of us will taste it. Someone has a drink out, another may take a sip. We do not do this with a cold. BUT- for us, with two ocd kids it is really important to be REASONABLE about germs, and not make a big deal of it. At therapy for ocd, our awesome therapist had dropped an M&M on the floor of his office. My daughter said- Yuck!- he said that is no big deal and he ate it. (she is not really ocd about germs, but she could go that way, and has in the past) Then they discussed it a little, and he threw an M&M on the floor and kinda stepped on it with his shoe and ate it. Is this extreme- yea a little- but the reality is germs are everywhere, and while we should take reasonable steps to prevent them- we also need to relax. THis is NOT IN ANY WAY meant to be addressing your MIL- that is gross- she is an adult and should know better. I just like to throw out there that the BEST policy (esp in a house where ocd lives) is to be RELAXED and allow the occasional ice cream share, or whatever. (I, personally, have become A LOT more germaphobic since my kids got pandas- but I hold it ALL inside......)

I'm still trying to get past the removal of autoimmune

smarty- cleaned up my inbox

pow pow- isnt this sad- I don't remember- hopefully someone will chime in. I think there have been a few problems with tylenol lately- I will try to look it up later if no one has the answer!

Peg- congrats! Enjoy! The worrying just never ends for parents, does it? I feel ill- equipped to even discuss your question, but I will, as I know just talking things out can be such a help. I don't know about preventing pandas, but you can IMHO certainly do two things that would be huge. Number one- vaccines. I would NOT be anti- vaccine if I had another child, however I would determine my own vaccine schedule. I would look at each vax, and think about what the alternative is (not getting the vax, and subsequently possibly getting the illness). I would also determine WHEN the risk was really relevant to MY child, and vax then, not much earlier. I would do one vaccine at a time, when the child has NOT been sick, and I would space them as far apart as possible. I think we learned NOT to medicate with tylenol. The other thing I would do is to be responsive to any infection. I would treat as indicated, and then re check. If I noticed ANY mood issues once the baby is recovered from illness, I would watch carefully. And in this case, advil would be my friend

Hi Sdrew... These are not my ideas, but techniques learned from extremely qualified therapist at USF. What we learned was to basically STOP accommodating, and raise the bar back up to expect "age appropriate" behavior. We had to work on "compliance". In other words, if I tell my child to do something, they need to do it. That simple. Of course, at the time we were coming out of a pandas flare, so we were walking on eggshells and accommodating this kid all over the place. She was tantrumming, and her ocd was pretty much running the house. We (this is all with the therapist- which was REALLY helpful) sat her down and told her that things were going to change. Short and sweet, we would now expect her to behave appropriately for an 8 year old. We listed some specific examples. Any type of disrespect toward her parents would not be permitted. If she was not compliant, she would get ONE simple warning. If she still was not compliant, she would receive a "time out". The time out is four minutes. It is in a place within earshot, and close to within view of our kitchen/ family room- but from the time out spot, she cannot see the TV and is somewhat isolated. No toys or anything are allowed in time out, but they do not have to be silent. Yelling or meanness, however is not allowed, and their time does not start until they are relatively quiet-ish. They may refuse to go to time out. THat is okay. Until they go to time out they get nothing. No food, no tv, no computer, and NO ONE speaks to them. If their infraction requires a punishment, that will be told to them once they have completed the time out. This is great because it gives the parent time to calm down and think. Honestly, we did not use punishments, and it still worked. Our infractions were not that bad, For us, within a week, we rarely needed to do time outs. The first day or two is HARD, and it is imperative that the parents stay united, calm, somewhat emotionally detached, and consistent. This technique has brought lots of calm to our house. It is almost a script that helps us as parents to stay calm, and matter of fact. And it is consistent for the kids. They HATE doing the time out, but they do it, and while doing it they have time to CALM down. I hope this helps !

How is the sinus infection now? Is it gone? My kids have not dealt with sinus infections. However this is what happened recently- my younger daughter had a cold, and for a month was going down hill (pandas wise). I did a week of regular ibuprofen and antibiotic dosing, which helped, but once she came off she got worse again. After about a month of this- symptoms remained fairly low lever- but they were there- I put her on a five day steroid burst. Days 1-2 were hard- she was very cranky on top of the pandas symptoms. Day 3, 4 and 5 were PERFECT! Day 5 evening, she looked like she was getting a cold. Next day, full blown cold, and pandas symptos (low level) returned. Ugh. Did another week of advil and antibiotics. She has been off everything now for a few days, still some low level symtpoms, so I am just hanging on to see where this goes. This morning (her worst time) was a little improved. So- I guess I am saying there are so many factors. He could be getting worse due to the steroids- but if that is the case, improvement could be right around the corner. If he is getting sick, or still sick, this IMHO could negate the effect of the steroids. The worsening could be due to the autoimmunity triggered by the illness. We have a pattern. My kids get sick, they get treated (and seem to recover fine), then pandas flares up and we need to treat that (immune modulation). If they get sick again, pandas flares again. So, IMHO it is vitally important to "reasonably" try to clear infection, and THEN try to halt the autoimmunity. Dr B sees lots of kids. I imagine he is speeding your son along the route to IVIG. We have never seen him, and I have mixed feelings about his protocol. I know some devotees, and some that are not fans- as with any doc. I find what works for us is for me to figure it out We use two great docs- but I still have to be the advocate, researcher, and director. You will get him there. Whatever route or treatment you take, I have found that time is a factor in healing that cannot be bypassed. The longer my kids have been sick, and the more severe, the more time they have needed (regardless of treatment) to get well. So, try to hang in there. Also- don't look at symptoms day by day- look at the weekly trend. This is a truer indicator of where you are, and will help to save your sanity, or what is left of it