dcmom

Hi Dut- Gosh, pandas parents have to deal with such tough stuff! I agree with all of the advice above. I will say the three schools we have been in since pandas struck have been wonderful. They have basically been supportive, while staying out of our way. We have given them all a written letter of diagnosis, and then when needed, just asked for what we want. Schools, teachers and administrators deal with this type of issue ALL OF THE TIME- it is not news to them, and they typically handle it with discretion, and very matter of factly. I do think it would be helpful to have the school officially notified of a diagnosis, just in case you need help in the future. We all know pandas can be unpredictable, and it is much easier to not have to educate the school and bring in doctor notes, if you are going through a crisis. We have found all of the teachers that we have worked with to be amazingly supportive. The other thing you may want to work on is "normalizing" pandas for your dd. This is tough- but for me has been very important. I do not advocate that the kids broadcast their symptoms to everyone they meet yet I do feel it is important they work on coming to terms with their disease. We worked on this a little at USF, and continue to work on it daily. Basically, we say, it sucks to have pandas- BUT we look at kids with diabetes, ADHD, aspberger's, extreme allergies, etc and say it is JUST like them. We also look at kids with learning disabilites, divorced parents, and those who live in poverty. We try to stress that EVERYONE has a cross to bear, it is not WHAT that is, but how you handle it, that reveals who you are. I encourage them to be open with the fact that they have an autoimmune disorder- and that does not necessarily mean they need to share the gory details (when you have the flu- you tell people you had the flu- you don't share how many times you vomited, etc). I also think (and this is a little tough love that I learned from our psych) that, at this point, the fact is it is not your daughter's choice whether she goes to the psych. I am not talking about setting up an adverserial situation- but when we were at USF we spoke a lot about "compliance". We found that due to pandas, we tiptoed around our kids too much, we needed to regain our power as parents. Our psych was very clear that we should look at ocd like cancer. If your daughter had cancer, and the doctor prescribed chemo, would she be allowed to not get treatment because she might be embarrassed at school? Anyway- this is not me, just some gems I learned from USF, that we work on, and I like to share, if it helps. Good luck!!! She will be a better, stronger person on the other side!

Tried to get medical exemption in nj- even with neuro's note they would not accept it . NJ has really tough requirements for medical exemption. We took the religious exemption- I have not hear a peep. Where would the state, and the school be, if we did the vaccination and pandas took control? I am sure they would be nowhere to be found! Do what you need to do, to do what you think is right. PM me if you want to chat.

We stayed at the larger RMH in St Petersburg for three weeks. It was myself and my two girls, both pandas, both there for treatment. I have to say it was a beyond wonderful and life changing experience for us. The "hotel" is much more like a home, and the RMH saying "the house that love built" describes it aptly. We had a private room with two queen beds and private bath. No TV in the room, if that is an issue. Very basic (comfort inn?) room, but VERY clean. Each floor has a small TV room that only one family at a time uses. There is a child playroom and TV room downstairs, along with an adult TV room, lobby, laundry room, outdoor patio and playset. There is a large kitchen (about 4 kitchens in one), food storage for each family and a dining room on the main level. Every family is given a "chore" to do daily. (we had to vaccuum the upstairs hall). Dinner was provided every night by a different group- companies, churches etc. Some were elaborate spreads. Much of the house ate at the same time, when the dinner was served. We baked for the house a few times while we were there, something fun for the kids. The staff and volunteers were amazing and wonderful to us. The other residents were all wonderful. We met some very interesting people. Most were suffering through something way more challenging than pandas, this gave myself and both girls a great dose of perspective. The house was fairly quiet most of the day, as many had kids in the hospital- it would be a little livelier at dinner time. Since, the RMH has become our family charity. We have a local one (much smaller) that we cook dinner for, and this past year my older daughter set up a school wide fundraiser for them. Staying there, for us, was a great "addition" to therapy. Gave us all a nudge to realize how fortunate we actually are. Being there alone with the kids, I think (besides the budget savings) it was easier for me- not to have to deal with dinner nightly. We rented a car on the weekends to hit Sea world and St Pete's Beach. Good luck- feel free to ask me any questions.

Both of my daughters have had T&A and PEX, and I would do both, or recommend both. For us PEX was a fast-acting miracle. It got rid of ALL of their ocd from their major exacerbation. It was not a cure, but brought them (quickly) to baseline- which I think is really important for long term health. One had a T&A prior to pandas- so clearly it is not a "cure". She was having sleep apnea due to swollen tonsils after a strep infection, this was two years prior to pandas hitting- she had NO pandas symptoms in retrospect. The other daughter had T&A because of pandas. The ENT was happy to do the surgery because our neuro referred us, and there is a published case study where a T&A did stop pandas symptoms which he was aware of. That daughter had strep 3x in the 2 years previous. He stated her tonsils were "unremarkable" on examination, but when removed he said they were clearly infected (no labs done). She did have an exacerbation due to the T&A- but was only on zithromax prior and post- I think that clinda and rifampin would have helped. Both have had strep since the surgeries, once or twice. I do not know the impact of the T&A. I do know that the debate/ concern over whether to have this surgery would probably have never ended- so I am glad we did it, and did it when they were young. The recoveries were relatively easy. I also know that they do not seem to have "chronic" illness, or "chronic" pandas- they respond well to treatment. Who knows?

Nancy has given you excellent advice, IMHO. We started my dd on zoloft, 12.5mg. It didn't seem to help. We only had one negative side effect- difficulty sleeping, which went away after about 2 weeks. I (personally) think zoloft is worth a try AFTER you have given pandas treatment two months. The issue I have with zoloft is that you need to titer up the dose VERY slowly, and you may need to be at full dosage for 4 to 6 weeks to see improvement. This could mean several months before you see progress. For us, pandas is VERY variable, usually getting worse, then improving, rarely static. How do you tell if it is the zoloft working, or pandas treatment, or what? Doesn't mean you shouldn't try- just that you should be aware. We TRY not to change more than one variable at a time- however when in crisis, I would say throw everything (including the kitchen sink) at it at once. Also- we have an amazing psych at USF (ped PCD experts) who told us if your child "llikes" the psych, then it is not the right psych. We found this to be so true! IN THE END our kids liked him- when they got over their issues- but NOT while they were "working" on it. We wasted a lot of time and $$$ with "nice" psychs who had a great repoir... Good luck!

I will just ditto everything that Powpow said. Both of my kids had pex, and I would do it again in a heartbeat. But, they were in the midst of a pandas crisis. PEX totally ended that crisis for both of them immediately. I will say, also, that both have done Storch's program- and that is beyond unbelievable! They learned a lot, and I learned a lot. It was invaluable, and got them over the hump of some ocd stuff that was "stuck". Is your child in the midst of a crisis? If so I would do pex (of course pex will not work if they are chronically ill with infection, it is not a "cure" for pandas), but I would follow that up with USF. If they are not in crisis, but "stuck" with some ocd- run straight to FL. Only you can really know where your child is....

Hayley- Dr T is great! My thoughts are this: Healing from pandas, for most, is saw-toothed. This means you should look for improvement on an overall weekly basis, rather than day to day. There will be bad days, steps backwards, but if you are seeing improvements week over week- I might continue with the one abx. If and when progress stalls- is when you need to be worried. The other thing is- we have found that abx do not do the whole job for my two pandas kids. When they flare up, they need more than antibiotics. So- I would consider a 5 to 7 day course of regular ibuprofen. Or, if after 2 full mos of antibiotics, there is not enough progress, consider a course of steroids. Also- we have found that a qualified ERP therapist has been a key factor in healing the child (and family). Hang in there!

I think it is hard for us to comment because many of us are parents, and can never know exactly what is going on in the mind of our child. I will say that my younger daughter, for sure, seems to be more in a fog during pandas (at points). Sometimes she looks like she is in a daze, or looks like she has a fever (glassy eyed, staring off). I do think it continues while she is on steroids, for a bit. But, when recovered she appears fine. Also-homework takes twice as long if she is not close to 100%.

Jen G- Is it possible the regression was not from coming off of the abx, and actually from the illness? I think that is a strong possibility... If you tried to come off the abx again, I would consider tapering (like momwithocdson said) and maybe adding some advil while tapering. We taper everything- advil, steroids and abx- even probiotics if I want to give that a break. Who knows? My kids were on full strength abx for two years before we even tried to come off- but then we were successful on a daily basis off of abx. I know "Sammy" needed a few years on full strength before he could come off as well. How long have your kids been on the antibiotics? Good luck figuring it out!

Feel free to pm me- both of my kids were diagnosed and treated by Dr L...

peg- I really don't know. We use them as sparingly as we can, yet I don't hesitate if pandas ramps up and it isn't controlled by abx and advil. I would say the kids end up on them about 3x per year- usually for the max of two weeks each time (sometimes only 5 days). We have changed things up a bit- used to automatically do a 3 to 4 week tapering burst. Now I kinda go by symptoms. If we start them on the steroids before things get out of control- less seems to work well. I know of a pretty conservative doc who did a 5 day burst each month to get a young girl with pandas under control. I think she did this for a year- not sure if still on this protocol. My goal is the least meds possible- yet being sure we are aggressive enough to be effective. It is definitely a risk vs rewards type of equation

Dawn- My kids both got strep (not tonsils) while on amoxicillin PLUS zithromax, both at treatment dose. We then used clindamycin and it erradicated everything. I would consider a long-ish round of clindamycin (used to treat carriers) for EVERYONE at the same time. Then I would follow up with steroids, if that is possible. I know I sound like a broken record-but I cannot imagine where my kids would be without steroids- but with being able to use them, they are living a completely normal life. Good luck- my heart goes out to you. Hopefully Dr T will have some answers!

basilbeth- Hi! I look at this a little differently. My kids have never been sickly. They get one or two illnesses (that are going around) per year, and recover quickly and easily. The do, however, react pandas- wise. They have also reacted at times to illness exposure. I see it as my kids are almost hyper immune. They do not seem to need a boost in immunity, rather they need their immune systems to be calmed. It seems to me that time, and rounds of immune dampening steroids, have helped us in that department. I do try to maintain good health for them with a healthy, varied, organic (as much as possible) diet, good amount of sleep, and minimizing stress. They take vitamin D (not mega dose) and probiotics (one capsule) during the school year.

Can so relate But you know, both you and he are up for this! I find with my kids that sometimes they can "revert" a little to old behaviors in times of stress. For us, it doesn't really mean full-blown ocd, or a pandas episode- but more like what you described- a night of anxiety or worry. Our psych told us that ocd is a lot about anxiety about "handling" things that happen. Like in other words- let him know he can "handle" it if he goes to school next week and it wasn't enough homework? We had this last week with soccer camp. DD was loving it all week, until they got to shooting (which she says she is no good at). She was so anxious about going on the last day, because apparently the soccer instructors liked to announce winners and losers of the game (lovely!). She was SURE she would be the "loser". (fear of embarrassment is a big ocd trigger for her) So instead of trying to reassure her that she wouldn't be the loser- I told her she most likely would be the loser (if she was not able to shoot as she said)- but that she could handle it- she could handle the embarrassment. She is about 100%, and has no ocd or anxiety now (thinks she has outgrown pandas, from her lips to god's ears). But- this "loser" thing at soccer really touched some deep nerve, that brought back some of this anxiety. The difference is, she went to soccer the next day, she didn't avoid it. And you know what- she was like one goal short of being the "winner" and the coach told her she was a great shooter. I'm thinking he'll even out on his own..... Hang in there!

Beth- My suggestion would be to find the best psych in your area (hopefully one with pandas experience). They can give you ideas, and write letters for your school outlining accommodations and suggestions. Certainly, a teacher cannot let your son "get away" with ODD-tye behavior in class, regardless of the cause, but the psych can offer constructive ways to avert and/or deal with issues. We found that the school did not even bat an eye, when looking at a letter from a "professional". We also found our individual teachers to be fabulous, however my kids had ocd, not defiance, which will be much harder to deal with. Interestingly, we had our share of ODD at home, it did not manifest in school AT ALL- so maybe you will be lucky? We found out too, through intense therapy, that we had really started accommodating our kids (which included walking on eggshells) during pandas flare ups, and how that was a mistake. On a practical level, when things are at their worst, a certain amount of accommodating at home is essential- but we learned (the hard way) that we must be very clear with expectations, non- negotiables, and when we were accommodating be open about the fact that this was not going to continue. We have learned to be very aware and verbal about what "age - appropriate expectations" were, and if they weren't meeting them, how we would work toward them. This ball got rolling much easier with a gifted psych. Good luck! I hope you get one of those teachers that were sent straight from heaven! I

There are several moms her from NC, I believe. Hopefully they will chime in. My suggestion would be, if you have the means, make an appt with Dr Latimer in Bethesda. She books out a few months- so I would call now, you could always cancel later. She got my kids through our roughest times.

bulldog- Both of my kids were fully vaxed till now (delaying meningococcal) pre pandas. I tend to try to be middle of the road. My thoughts would be NO vax unless the swollen tonsils thing resolves. When that was resolved, I think I would look at each vax, and see what the risk of the disease is at your child's age and lifestyle, and then determine from there for myself which vax were needed. I would also give one at a time, with 8 weeks between. Off the top of my head I would skip the flu vax and chicken pox vax. I know it is really, really tough- and it sucks that we as parents don't have enough info to really make a solid decision (no studies on the safety of the required vax schedule).

smarty- You've gotten GREAT advice! And I agree with all of it. My daughter entered third last year. It was the first year I did nothing special for her. She did not meet the teacher before school started. I did not give the teacher any heads up (on top of, or maybe because of pandas- she is very shy- borderline selective mutism- but getting better!) A few weeks into the year I set up a meeting with the teacher to explain our "challenges" and let her know I was on board for absolutely anything she needed. She had a great teacher, and the year went unbelievably well- and she had NO special treatment. I think that is your goal. I would err on the side of staying out of it completely- letting the school and your son deal with it- while making sure they both know you are there if there are any issues. I keep reminding myself that I want her to be totally self sufficient as far as school goes by the time she gets to middle school. If your son is aspberger's like- I don't see the harm in having this put in writing (I think you could get rid of it if no accomodations are needed- but maybe some wiser moms can comment on this part of your question). If this "term" gets your son what he needs, and helps the teachers to be more effective with him- then I think I would go for it- if this is what they suggest to you. Good luck- and work on your own anxiety

Taffee- I can identify with the crying. I have two daughter diagnosed with pandas a little over three years ago. The good news is: they are doing great! They are happy, blossoming, etc. The tough news is- there are a handful of docs in the country that will treat pandas appropriately, and IMHO until you see one of them, you are wasting your time, and enduring more heartache. Pandas is (relatively) new, and was not taught in med school. You need to see a doc that has lots of experience. Tell us what state you live in- and we can all make suggestions. IMHO the appropriate course of treatment is something like: decent panel of tests, minimum of 60 days of full strength antibiotic, if no resolution of symptoms looking toward steroids, IVIG and/or plasma pheresis. THis is TOTALLY treatable, and the sooner you get a doc on your team, the better.

I would think you would have a better chance with Dr L or Dr T- so I would extend your question to see if either of them will Rx IVIG at home....

My kids don't have tics- but- I tried giving fish oil twice, and both times our days were not so great. Cannot completely say it is the fish oil, but I am not trying it again...

We stayed at the RMH and loved it. However, St Pete's Beach is beautiful and not too far. We were there in August and there was no traffic at all (I am from the NE and used to lots of traffic). It was very easy to get around. The drive to the Disney area is easy- so there is lots to do!

ugh- just lost my whole reply. Peg- this one will be shorter:) We have dealt with sensory issues with our psych. They can be dealt with similar to ocd and anxiety (if you are familiar with the worry hill). She needs to face her fear, instead of you making it better. I know your dd isn't verbal, so I hope you can adapt my idea. Our psych used the term GUTI for get used to it. Any sensory issues is bad and anxiety producing at first, but over time the child can get used to it. If this was my kids- this is what I would do. I would reassure once, and only once, that this is the AC turning on- it is what keep our house nice and comfy when it is hot outside, it will not hurt you. I would show her where the ac is. Then I would make a game of it. Sit with her, holding hands- and have someone turn the ac on. Do this over and over ( if its really bad maybe a few times a day- use your gut). If she can hear it go on, and not over react (be specific about what you want and do not want) then she gets a reward. I would have the reward be something small, immediate and persuasive. Maybe something she can eventually just take on her own everytime the ac goes on. For my kids I might do a jar of m&ms or stickers. When the jar is gone the game is over. Eventually, hopefully when the ac goes on, she will run for her "prize" and not out of the room in fear. Does this sound possible?

MD mom- Concur with Dedee. I think I was there right after her with my two daughters. They just have a handle on ocd that is unreal. I found our therapist and Dr Storch to be unflappable! Nothing surprised him- he has seen everything. He was tough- which is one of the ingredients that had been missing in our other therapists, and my kids weren't able to outsmart him The program was not only a HUGE help to my kids, but it was an amazing experience for me, gave me my power back as a parent (after losing it slowly with two years of pandas in two kids). I cannot say enough about the program. I do think the kiddo has to be "somewhat" ready to do some work, however....

Thanks LLM- that helps. We have our semi annual visit to Dr T coming up, and I will discuss this issue. And the possibility of supplementing. Having two pandas kids who have had an almost identical course of illness, makes me question the relationship of MTHRFR to pandas for us- however I have read up on the other issues this can cause in the future, so I am interested in being sure to prevent them (if necessary). In my family tree, everyone has been really healthy! But, my husband's side does have a history of stroke. I think it would be interesting/ helpful to test my husband and myself to see which of us carries the gene. If he does, it would certainly seem like a possible smoking gun. If I do, well, I might become more skeptical I have become a bit of a "chicken" in the last year (with pandas). Things have been great, or under control, for the most part so I am always afraid to "rock the boat". But I do appreciate your patience with explanations and reasoning. I am not trying (in any way) to challenge you- just figure this out for my kiddos.