dcmom

I cannot recommend USF enough. I took my two pandas (ocd) daughters there 1.5 years ago, after working with several local therapists (without much success). IMHO pandas treatment needs to be both medical and psychological. USF therapy is not a replacement for appropriate medical treatment, but will work very well in conjunction with it. We did the three week program (typical). We stayed at the Ronald McDonald HOuse, and loved it. We followed up with a "reward" trip to Disney. The parent is with the child most of the time, and completely involved in the therapy. The therapy is one hour per day, weekdays only. We stayed in Fl on the weekends, did fun things. My kids were fine with the process, which in the end worked- so they were happy. We met with Dr Storch for intake, our Dr was Dr Rahman- who I adore. We did not meet with Dr Murphy, as we feel we have good docs for the medical aspect. USF was covered by insurance for us. We paid about $200 out of pocket per child, and I think a $200 donation to the RMH. The whole trip was very budget friendly.

I am a believer in the autoimmune theory. I have seen my kids recover with lightning speed from PEX- which removes the antibodies from the blood. It does not in any way treat infection. They both had lasting results from pex.

mama- you are doing your best in an impossible situation. I don't think you are being mean. I just make my suggestions because we were in your exact position We pushed, we got her to school, we offered rewards and did some consequences. She said the same thing your son said- the rewards were so much pressure. What does he fear will happen if he does something wrong? This sounds very similar to my dd. She was afraid of vomiting (and the embarrassment it would cause) he is afraid of doing something in class also. I think he needs to go through scenarios of him DOING these things, to see that whatever comes, he can deal. You should be able to find someone local (if you can pay $$$) to do this with him. Call Dr Eric Storch for advice. Call the IOCDF for recommendations. INTERVIEW the psych on the phone. Tell them your son clearly needs immediate ERP- he needs to work through doing these things in a class type situation. Find out exactly what steps they will take, and if they will jump into it immediately, in the first session or two. I hate to see you lose the rest of the school year

I have been away since my last post, but wanted to follow up..... I am not necessarily for forcing a child to school without the proper tools. In other words- at USF we really did not use any negative reinforcement to fight ocd- mostly positive. We spent our time prior to usf trying to force my dd to school. She was mostly compliant. But when she wouldn't go, we did have consequences. Unfortunately none of that addressed her fear. Her fear was vomiting at school, and just being at school was not helping, well, because she was not vomiting there. So she was constantly worried about it (putting it mildly). She went on like this for months, miserable, trying so hard to comply, but being really scared. At USF they did ERP for the vomit fear, and that was it- it was all over. So in my opinion- you need to find the specific fear at school, and address that directly, asap, and then work back into school. I don't know how to do this without usf Your child needs to tell you what they are afraid of. They won't want to tell you, they will lie to you, but you need to get it out of them. Sometimes my kids will write it down- it is easier than saying it. Once you have the fear- you can work on that. You can work concurrently with them to get them back into school. IMHO if school refusal has gone on for longer than two weeks, I would make every effort to get to USF. If you cannot, I would contact Dr Eric Storch at USF and ask him if he has any recommendations for more local therapy programs. (for example there is one closer to me at UPENN, but it is costly). I am ALL for tough love. But sending them into a situation without the tools they need, and punishing them if they do not succeed (without the proper tools) is not going to help. I hope I am not sounding harsh- but we did just that, and it definitely is not a self esteem booster- if we had went to USF sooner, we would have saved a lot of heartache for the whole family.

USF changed my family's life. No other way to put it. If your child has pandas/ anxiety/ ocd it is a "no-brainer".

Hey smarty- I take no offense You are a brilliant mom and a great forum friend! HOWEVER don't take offense, but I am going to pick apart what you said- just for an academic/ philosophical discussion. I think there is really not a difference between ocd's unfounded and "founded" fears. A fear is a fear. To someone with ocd, they do not see a difference- and the reality of therapy is not to establish that your fear is unfounded- because actually many of these fears could happen. My dd could very possible vomit in class, mama's son could blurt a curse out, etc. We cannot guarantee either of them that these things won't happen. BUT- the point is to make sure they KNOW that whatever happens (worst fear), they can handle it. Once that is learned- it doesn't matter if the fear happens- they handle it. I am not sure I totally understand your son't situation- so I am not necessarily speaking to this- but just speaking more generally- it doesn't matter whether the fear is an alien abduction at school, or the fear is an F at school- if the person has this fear they are equally as scary, even though we can see the difference. So I am very carefully for minimal accommodations to get them into school- I am a firm believer that they need to be aware that these are accommodations, and they need to have some sort of time frame. My philosophy is that if all the other kids can do it (whatever "it" is)- so can mine. No (more) kid gloves here. Kinda turning back the clock to some old fashioned parenting- but with some modern conversation thrown in. BTW- did anyone see parental guidance? Very funny movie!

YES! I have two daughters with pandas. Both had overnight onset almost four years ago. They are ages 12 and 9. Both have had pex, abx and steroids. Both are happy, well adjusted, blossoming, with great grades and lots of friends. They are happy at home and at school. When "healthy" they take no meds, no supplements. Both still have pandas, and flare with illness (and once and a while for unknown cause). During a flare, they get abx, and motrin or steroids. Thankfully their flares are less often and much, much milder. We also have done fairly extensive, quality therapy- and have learned better ways of dealing with pandas as a family. I have come to the acceptance that pandas may always be with them (although, thankfully, my older dd hasn't had an episode to speak of in well over a year). I have grieved over this, a lot. But we are in a much better place. They are and will, live totally normal lives despite the pandas. We liken it to living with food allergy, or diabetes. Yes, it sucks, but it is the reality for a lot of kids, we deal with it and we live our lives. My advice, is to treat each exacerbation as aggressively and quickly as possible, AND not to accomodate them. Hang in there- for us the first year was the worst.

Hi Mama- Just wanted to chime in here, as we went through this My school- loving, smart, motivated daughter had a pandas exacerbation in 5th grade. The ocd was horrible, and she ended up on homebound instruction for two marking periods. We also worked with a couple of local psychs. Yes- mostly a LONG warm up period- talk about it, talk about it. Not only was that a waste of time, but it was detrimental to her self esteem (IMHO). We were basically trying the ease into school approach that Nancy detailed. One class a day, working up. She was great- she tried to be compliant. But she would come out of school white as a ghost. She spent the entire class in fear, ocd thoughts, etc. No learning was taking place. She could go- but was miserable. We eventually (wish we did it sooner) went to USF. We learned so much about dealing with ocd, and about putting our family back together. We learned she needed to face her fear directly. Her fear was not school itself, but was a fear of vomiting in class, and being embarrassed (sounds somewhat similar to your son). So, she had to say vomit, see photos of vomit, watch videos of people vomiting, say the word vomit to strangers (USF is a hospital setting), tell strangers stories of her vomiting in class, pretend to vomit in front of strangers, etc. Well it worked! She did not need to be eased into class after this- she was totally fine. She was over the fear. So my thought is, you need the therapists to address the underlying fear- fear of doing something bad. And he needs to simulate doing this (in baby steps) over and over. It does not need to be done at school, but some kind of environment outside the home (I would think). We have found that our local psychs in DC and in NJ just weren't willing or able to really dig in, get their hands dirty, and be tough enough to get this done. All of our local psychs wanted to develop a "relationship" with the child, whereas our psych at USF told me, if your child really likes their ERP therapist- then you probably are with the wrong therapists. My kids did not love him- but I think now, they really appreciate what he did for them- that no one else could. Feel free to pm me. Eileen

tpotter- I just want to respectfully disagree with one thing you said. When the NIMH paper states there are multiple infectious triggers for PANS- my understanding of it (and what we have seen in both of my kids) is that many infections can cause a pans like illness, not just strep- but it is not requiring that there be multiple infections at once. Both of my kids were triggered by strep. Both remitted with pex- and stayed at about 100% for over a year. Both relapse when there are infectious triggers. Both (so far) respond well to immune modulation- and seem to remit until next infection. Clearing infection does not seem to be an issue for us. They clear infections just as a "normal" kid, but then autoimmunity results- which we have to treat with appropriate methods. So- so far for us- it has been, well, relatively straightforward. Just wanted that on record for new parents- as if this is the case for your child- you do not need to go to extra ordinary measures to look for, or clear, multiple infections. I am not disputing your experience at all- just saying there is a simpler version.

Tamistwins- I am in NJ- too, now. My kids were 6 and 9 at the time. They are now 9 and 12.

Both of my pandas daughters had it at georgetown university. Both were in pandas episodes at the time of pex, that we couldn't keep in control with steroids. They both responded amazingly well, and were back to baseline within a month. It is not a cure for pandas- it can be a cure for an exacerbation. Since then we have tried to stay ahead of pandas- to not let them get to the point of needing it again. Would have either of them have pex again if needed, in a heartbeat. Very tolerable procedure considering the life changing results. good luck- it's expensive, and our insurance gave us a hard time- but they eventually covered it.

omg- how ridiculous. Therapy- yes, psych ward- out of the question. Have you considered outpatient, intensive, therapy at USF? We loved the program.

My pandas dd's got the flu several years ago. The one that got tamiflu fared MUCH better (pandas wise) than the one who didn't. We got tamiflu into her within 24 hours of fever onset. (sister was just recovering from the flu, so we knew that is what it was) The fever subsided within another 24 hours. About 12 hours later she was spiraling very quickly into a pandas episode. We waited about 12 more hours (24 hours from fever subsiding), and gave her a steroid burst. Within three doses of steroids, she was totally fine. She actually had over a year remission after that, so the steroids had long lasting effect. Others on here have had bad luck with tamiflu. I would imagine that is the same as the general public, it does have side effects. I do think, with pandas, the quicker you can halt the illness, the sooner you can shut down the immune response- IMHO it is worth a shot. I believe (check with the pharmacy) that any side effects from Tamiflu would stop when you stop the drug.

Welcome, and sorry you are here at the same time. I have two pandas daughters who had onset and were diagnosed about 3.5 years ago after a bout of strep throat. I am so glad that your son has responded to treatment! From what we have seen, it can take longer for some "issues" to resolve than others. My kids don't have tics, we have ocd with emotional lability, temper tantrums, sometimes cognitive issues, sleeping issues, etc. They have both responded very well to treatment- however we do see some symptoms taking longer to resolve. I will try to give you advice, based on our experience. We treat our kids as "normal" kids. We (now) try very, very hard not to accommodate any of their "pandas behaviors" or fall into bad patterns. We are very careful about maintaining "age appropriate expectations"- which in our experience can fall by the wayside during an exacerbation. We are very honest with them about this. We try to be very in touch with their "baseline" personality (which is basically, easy, wonderful and sweet- very little drama). When we start to see some minor issues (ocd or emotional, or defiance) we know somehow pandas has been triggered (usually illness, or exposure to illness). At that point they are given a z pack along with 5 to 7 days of regular advil dosing, along with melatonin at night to promote sleep. Many times, this is enough. If this is not enough, we proceed to a steroid taper, long enough to arrest symptoms (usually 10 to 30 days, depending). That has been really, really successful for us. There have been a couple times the above protocol was not enough. At initial onset for each, they did not get steroids for a couple of months in, and pandas had really spiralled out of control- we used pex then, very successful. More recently both had strep throat, so we did a round of IV steroids. We do not do any supplements regularly. We give probiotics during antibiotic use. This has worked for us, my kids are flourishing- many on here find they like supplements, daily probiotics, and daily antibiotics. It depends on what your child needs. I have become very concerned about unintended consequences of med and supplements, so we do this bare bones approach since they are well. We do not go to ANY extreme measures to prevent illness. When your kids have ocd, you have to be careful about this. What we do instead, is make sure we have a plan, and access to meds and doctors to manage the pandas when it happens. I do kinda feel like the first year was really tough, things have gotten better. It definitely takes time for the immune system to calm down and the brain to heal fully. When my kids are coming out of an exacerbation, as long as we are seeing improvement week over week- we stay the course- do nothing extreme. If your son is pretty much back to himself, minus some ticcing that has improved. I think I would want to stay the course, give it a month, see where you are then. We also see sawtoothed healing (good days, followed by a bad day), but if we look at it week by week, we can see the healing more clearly. I highly recommend having AT LEAST one pandas specialist on your team (this means a doc willing to prescribe antibiotics, steroids and pex or ivig). Good luck- hope this is coherent...

so- unfortunately a cold can mess things up If you do the whole taper, I would consider a week of advil dosing after the taper is done. (something like 4 days at 3x per day, 2 days at 2x per day, and a few more days at 1x per day). This is my own protocol. Pandas docs use advil to help with inflammation. I read on an ms site suggesting advil post steroids to avoid rebound inflammation. I liked the idea, so we have done it. Think it has been helpful- but hard to be sure.

What dosage is your son on? Is there any possibility he is sick? What trend were his symptoms on prior to starting steroids, getting better or getting worse? I would say you should definitely expect irritibility, and possibly aggression, increased emotional lability, etc during the beginning of the taper. These are side effects of steroids, for anyone, not just pandas kids. But- irritibility on top of pandas is tough. For us, we would sometimes see this initial worsening due to irritibility added to the ocd- not a pretty mix. However, when the dose is decreased- we start to see major improvement. Both of my kids have a really hard time at 40mg per day- we now, sometimes start at 30 mg per day. Neither of my kids have tics- so I cannot comment on the course of those- I would imagine steroids could temporarily increase them as well. I would consult your doc- but I would try to get through a few days after you lower the dose, to see if things improve. If you stop now- you will never know if they can work for him. Hang in there...

Hey surf mom- All kids seem to be different. Mine were on daily abx for two years since pandas diagnosis. They do really well (symptom free) and flare with illness. When they eventually both contracted strep while on multiple antibiotics- I finally said WTF are we doing? We have changed tactics. We now accept we cannot keep them from getting sick, that is probably impossible, and probably unhealthy. We do not take ANY precautions that you would not take with an ordinary child. We do not wash hands a lot (sorry- ocd family here), no hand sanitizer, no supplements (vit D for one dd who tested low) AND no antibiotics. We have an action plan ready for when they do get sick. We have been doing this for almost two years- and it has been their best two years since pandas hit. If we see any reappearance of pandas symptoms, we do a zpack and 5 days of advil dosing. Otherwise no meds, no supps. All kids are different- but, I would sure want to know what my baseline was, and what help (if any) the meds are doing. For us, the key seems to be shutting down the autoimmunity as soon as it starts- otherwise they are normal kids. Doesn't work this way for everyone here- but still might be helpful to know why you are taking certain supps. I did try fish oil twice with them- both times we had bad days (just cranky, maybe hyper-ish)- decided then to be very choosy with supplements. My grandmother never took a vitamin in her life (and rarely saw the doc), ate lots of canned goods and Entenman's products, and lived and extremely healthy life to age 90. I am over obsessing- if they are doing well

Hi Megan- Both of my girls had pex with Dr L. They were extremely symptomatic, and it was a miracle for them. There would be no need to do pex, or ivig if a child is symptom free. good luck!

pr40- Well that is not exactly what I meant. For my two girls steroids have been lifesavers! IMHO they are underused to manage pandas. Both of my girls have been able to maintain completely normal lives by using minimal antibiotics (only for a flare up) and a few courses of steroids (per year) for the last two years. My caveat, however, is there have been times (once or twice for each I think) where a steroid burst has not been able to do the job. So- I don't think a lack of response to steroids is enough to rule out autoimmune. Both of my girls had pex (for autoimmune) after steroids would either not do the trick, or not give lasting results- and pex worked beautifully for both. Also- If steroids do not work once, does not mean they will not work again. Not sure of your dosing. How many mg in 2 tsp?

hi. We usually give in the am. Steroids can cause side effects, which initially can make pandas look worse, but in our experience this calms down after tapering to the lower dose. Side effects can be: larger appetite, irritibility, difficulty sleeping. Do not give ibuprofen or melatonin with steroids. We have seen varying results from steroids in terms of how much is needed, or how long it takes to work- mostly depending on how long our kiddos have been symptomatic. We do usually see healing in reverse order. Sometimes, some ocd gets "stuck" and we need to do a little therapy to get rid of it. When on steroids I do try to minimize strep and be more vigilant about illness exposure, diet, and sleep. Most of the time now, I will do 5 days of advil immediately following the taper, to avoid rebound inflammation (read that protocol somewhere for MS). Most of the times, the steroids do the trick for us- at least until next illness or trigger. I will say, however there have been a couple times they were just sick too long, or it was too bad to be fixed with the steroid. This did not mean it wasn't pandas, but those times we moved on to a "bigger gun" like IV solumedral or pex- which both worked. Good luck! How long is the taper and what dosing...

nickelmama- we see Dr T mostly. Used to see Dr L, but we moved. Both are on board for our protocol. My kiddos are no longer on daily or prophylactic abx. If they get sick, or if I see a flare up in pandas, I immediately start them on a zpack, and 5 to 7 days of regular advil dosing (3x day). Many times this will take care of it, esp if the trigger was exposure or a cold. If they were sick with a fever, it seems we need a bigger gun like steroids. Thankfully, they only end up needing the steroids about 2x per year, lately. I try to have a burst on hand ( yes, pre- prescribed by the doc). Lately, I have been experimenting a little bit, with really getting the lowest effective dosage. Both docs typically prescribe around a 3 week burst- we don't always seem to need that much. I try to give them the full dose (they both seem to tolerate 30 mg/day the best) until I see a major improvement, then I taper off as per prescription. Last time I did this for my little one, she was only on the 30mg for 3 days (as opposed to the 7 of the prescription)- I was therefore able to taper quicker, so a 4 week taper became a 12 day taper. Compared to the alternative, it is my opinion that an average of two steroid tapers a year is much less risky than living with pandas, or letting pandas get out of control. Since when my kids get pandas, it starts with one or two symptoms and snowballs every day- we feel the faster we stop it, the quicker they can get back to normal. For me, this means it is imperative that I have steroids in the cabinet. I would totally expect if my dd got pneumonia- they would go downhill fast. We have moved our focus from trying to "cure" pandas, to "managing" it- which means being prepared to be aggressive when it hits. BTW- when they first developed pandas- both went into a very bad flare (different times). We tried steroids at the time, it did not work. They ended up having PEX (which was a miracle). It is my belief that the pandas had progressed too far (they had strep and the pandas developed and was not treated with anything other than antibiotics for at least 3 months.) for the steroids to really work. This is why now we don't let it get out of control (if we can help it).

Hey Linda- Glad things had been going well- hold on to that. I think I am in somewhat of the minority here, but I will tell you what has worked for us so far.... I have two girls with pandas (ages 9 and 12), we have been at this for gosh, almost 4 years. Both girls are doing awesome! They are blossoming right along with their peers! This is not to say we haven't had bumps, but I say that they are at about 95%, 90% of the time. For my older one, she has been even better than that for the last two years. We have made reasonable efforts to look for chronic infection. It has just not been an issue here. Both girls are physically healthy, I can see it. They do, however, still have pandas reactions to illness. We have treated this as autoimmunity, and it has worked, therefore that is what I believe it is. So, in other words- if they get a cold or the flu, or strep, they are treated for the illness. They recover. But at the same time, the autoimmunity is triggered, and we get pandas. For us it starts mildly, and if left untreated, it continues to spiral downhill. It seems each illness has its own pace for how fast it gets out of control. If we see a flare up, we treat immediately with 5 days of zithromax and 5 to 7 days of advil (3x per day). If this doesn't get rid of most of the pandas symptoms- we go straight to steroids. I would tell you that steroids have been a lifesaver for our family. I do not know where we would be without them. I would not try any other long term medication before giving them a try. For my kids, they have been able to stop the autoimmunity in its tracks, and they have been well and recovered completely. This is a short term treatment. The sooner it is given, the better. The sooner the pandas is treated, the less symptoms need to be eradicated. For example: A few years ago my younger dd had the flu. We gave her tamiflu, which stopped the flu within 24 hours. Within 24 hours after her fever subsided- she was spiraling downhill extremely fast into a pandas episode. We immediately gave her a steroid burst, and within 3 doses she was almost 100%. She did not have another exacerbation for over a year. We expect that they will get sick, we expect that will trigger pandas- our biggest objective is to have a plan in place for this, so we can act quickly and aggressively. This has been the key for us, so far. Good luck!

Hey mama's- I totally feel for you- the weight issue is certainly scary, and does sound puzzling. I am not saying this is your situation, but will just throw this out there: My little one had a clear onset of ocd after strep. At the same time, my older one developed fairly constant stomach discomfort and due to this cut down severely on her eating. Even though we knew all about pandas, we did not see this as ocd. We did gastro work, she was diagnosed IBS (she is not). Fast forward six months (stomach issues persist), and we come to the realization due to other issues, that she has pandas. Within one month of treatment, all symptoms subside including stomach issues! My other daughter also has her eating affected with pandas exacerbation. She becomes much pickier, and many foods are not palatable to her anymore. When she is pandas symptom free- this issue goes also. I just want to say that eating (or not eating) is a MAJOR PANDAS ISSUE, that many (if not most) here have dealt with in some form. I think you should listen to Dr Latimer, and not necessarily believe that this is just a loss of appetite due to physical factors. I am certainly an advocate of treating any possible medical issue, and testing for possible physical causes- BUT I think it is important to look at any new behavior, symptom, physical complaint, or issue in general as possible pandas- and rule that out first (or concurrently) if necessary. We have also seen headaches as a pandas symptom. I think the headaches and stomach issues that my older daughter has had have been on the "sensory" spectrum- while the eating issues my younger has had were more ocd in nature. In the end, aggressive pandas treatment (steroids or pex) has been the answer for us, and these issues disappear along with the ocd, emotional lability, cognitive issues, etc. Good luck!

I will second what LLM has said. We have only had support and kindness from the two school systems we have been in (DC and NJ), however, we have always approached the school with a short letter of diagnosis from a neurologist, and a longer letter of requested accommodations from a psychologist. Maybe because of this, we were taken seriously, and anything we have wanted has been done without issue. An on-board psych is invaluable. They can be a resource to you, and to the teacher if needed. Good luck!

Does this illness have congestion? 90% of the time strep is NOT accompanied by congestion- so this is a good clue. If you have not been at this (pandas) for long, I would have a throat culture a few days into illness, to be sure. We did this for about a year, but realized that we do not have any major strep issues- so now we don't run to the doc every time. Sore throat w/o congestion, headaches, stomach aches or fever could be signs of strep. Have a culture, not a quick test. If it is a cold/ virus, I normally put my kids on antibiotics (they are not on regularly) and dose regularly with advil (3x/day) for a week. My kids usually do react to illness. If I were you, I would probably wait until I saw pandas symptoms to change any meds. However, be aware that there are some initial warning signs of pandas (for us), prior to major symptom appearance. We see emotional lability, negativity and difficulty eating. The minute you see this I would start the advil. Do not miss a dose. If the zith causes tics- I think I would hold off, and hope the advil will be enough. We see dr T too, this protocol has worked really well for us for the last 2 plus years. If there are symptoms that are not controlled by abx and advil, we move to steroids. Good luck!