dcmom

both of my kids did the intensive program in FL- It was amazing- REALLY helpful in demystifying ocd and erp, really great place!

mom2yo- It does sound like you are seeing improvements. I have 2 girls with pandas. We have found it important to look at behavior patterns weekly, not daily, to see changes. Sometimes when healing, we could see a positive SLOW weekly trend. But, adding those weeks up eventually made a BIG impact. IMHO with pandas, what we see for our girls, is that we clear the infection well enough, but we NEED pretty quick or heavy-hitting immune modulation. I am worried that your pred burst was not high enough and not long enough. I would push Dr B. We have found docs reluctant to do the dosing of steroids needed- but when we do get a HIGH dose- it helps. The other suggestion, and I only skimmed your the thread so forgive me if you are all over this- is therapy. My daughter was 5 when pandas hit, and hit hard with debilitating ocd. She got pex within about 6 mos- and after that ALL ocd just was gone. With my older one, and the younger one later on- we really needed to do some therapy for them to really let go of the ocd. It was like the ocd was gone, but they were still very afraid of feeling those intense fears, so they stuck with the behavior. ERP was MUCH easier after treatment- but it was still key in shedding all of the unwanted behavior quickly. It has taken us a while, but we finally found a therapist that works for us. I will tell you the key is that he is tough. Yes, he is extremely knowledgeable and experienced with ocd- it is a given you need someone like that- but what we had been missing before is someone that really lays it on the line for us, and doesn't give BS excuses any credit. Good luck!

C- If there is a possibility the strep is not cleared- I would try clindamycin. It is used for carriers, and I think several here have had luck of it clearing resistant strep. If you think there are a lot of immune issues, why not IVIG? I hope your new doc helps....

Chris- Has your child ever had IVIG? Was your child's symptom onset correlated with a strep infection? My kids had sudden onset OCD, after years of a neurotypical childhood, coinciding with a strep infection. We were pretty clear they were pandas. PEX helped us dramatically, it is hard to even explain. But- it is not a cure. We were not in your financial situation. We have had issues since, and have continued to need financial resources. So- I am somewhat in line with LLM in thinking there are things you should be trying that are less expensive, prior to pex. It is not that easy to get pex. You would have to travel to see (I am assuming you are thinking of Dr L) Dr L first, she will not want to go immediately to pex, but sensibly try some first line treatments. You will have to probably travel to DC twice, and then a third time for pex. The hospital will require you to pay up front if insurance isn't paying. For us it was $26k, and that included everything. We already had the procedure done on our first daughter, and it worked miracles, so we were somewhat confident it worked. There are some families on here for who pex did not work so well, who went on to find they were either dealing with much more than pandas or with something other than pandas. After pex follow up treatment of possibly therapy, and antibiotics will be needed- and there is a huge possibiltiy of a relapse. I guess my advice for you is to calm down and slow down. If you are relatively sure this is pandas (btw the significance of failing pneumo titers without revaxing is really an unknown at this point)- then I would do the following: get him on a month of antibiotics- different from what you have tried in the past, maybe a combo of bactrim and amox? After a month- consider steroids. Have you done them before? We have found that high dose IV steroids work about 75% as well as pex for us. The results come more slowly- but steroids are easier to get, cheaper, etc. I would wait a month after that. Then if needed, I would pursue IVIG. I IVIG would cost around $10k. If it is ocd you are dealing with, I would also get to USF for ERP therapy. And I would consider trying a low dose of an SSRI to see if you can get some relief. I am not really sure of your childs history. This is so tough. My girls did have great luck with pex, as many others have, but there are some kids still here who it was not the magic bullet for. Hang in there

I am so sorry you are going through this. So- although my girls never presented as classic anorexia, both would eat VERY little, and it was becoming very scary. Our oldest would not eat after 3 because she was afraid she would get sick. That went on for a long time, and we didn't really catch on until later. Then when things went downhill with pandas she wouldn't eat anything after breakfast, for the rest of the day. It was very scary. Difficulty with eating is usually one of my younger's first, and low level symptom. For her, food becomes not palatable. She will be hungry, but cannot find anything she wants to eat. Normally she is a picky eater, but has a nice list of "favorites" that she eats all of the time- when pandas/eating problems hit- she no longer likes these favorites. She ends up eating next to nothing, yet being hungry and miserable. Both girls went an entire year without gaining a pound at ages 5 to 6, and 8 to 9, (actually, I think they lost quite a bit with pandas, but gained it back when they got better, to remain even)- the pediatrician was concerned. During these times, I put them in front of a movie for meals, when possible, with a tray of tasty small bite foods (fruit, veggies and dip, cubes of meat and cheese, whole wheat crackers, tea sandwiches, pizza bagels, etc). I noticed they would forget and eat more without even realizing it. We also did lots of smoothies (ice, strawberry kefir, frozen strawberries, frozen blueberries, milk, mango sorbet and I added protein powder- vanilla "muscle milk"). I know your daughter is older now, so these things may not work as well for her. PEX immediately resolved these issues for both girls. Although our road since has certainly been bumpy- we haven't seen a time as bad as that initial onset prior to pex. I know your doc, and she will take this very seriously- I hope you have gotten in touch. I hope this helps a bit....

Oh smarty- unfortunately no words of wisdom here. (I am a bit of a mess myself- just from almost three years of dealing with pandas on and off, left little for me, and now I am paying the price). We all know how hard you have been working and fighting for your kids. None of this is your fault- of course you are going to make mistakes- but the real issue here is how the whole health/ child care system lets us down. Doctors. Psychs. Teachers. Principals. You know you have done everything, and will continue to do everything you can- you are the BEST mom for your son- you KNOW that. Let go of regrets and move on Is your son at home now and out of school? Have you moved? You are not wrong to have had him in school. Our kids should be in school- they NEED to be able to function in our society properly. I hope your new psych has this as the ultimate goal and will help you advocate in the school. I truly think the goal is, and that our kids are capable of, being in school with no accomodations. I really do. But- that is with a lot of tough work in therapy, and with proper medical care- and it comes with time. We had such a great experience at USF for their intense outpatient ocd therapy. I think the program there could be really valuable for your son. (It is budget friendly). I can't help but wonder if some of the issues come from underlying ocd. Especially since he is doing so well generally. When my daughter was recovering from an episode- she was also like 90% plus- however she had one or two ocd issues that prevented us from getting her to school. It was baffling. I guess it was residual ocd that was strongly entrenched- USF took care of it. She is in school every day now! We have some writing issues with my younger- spelling and handwriting mostly. Thankfully she loves to write- but has only had kind, supportive teachers so far- we are looking into getting her some support at school. There is no "official" writing support program at her school, however, I know there are many accomodations that can be given for writing. Also, you could start with LOTS of writing accomodations (to the point where no in class writing would be required, I would think) that can be SLOWLY phased out as he makes progress. Sigh. My kids are doing fantastic now (fingers crossed)- but, I will say they both have some lingering issues that we would NOT have had if pandas never hit our family. I think there are a few learned responses, which they used in really tough ocd times, that pop up when they are stressed- and I also think there are some neuro issues (spelling) which were not an issue prior to pandas. BUT, I try to think of it as a balance (hey- you know how many kids have either asthma, diabetes, serious allergies, or adhd?). Yeah they have pandas and it really sucks- but also, they have learned so much about strength, compassion, and maturity (uh- not to mention medical practices and science) that they are WAY beyond their peers in some areas. Your son will be fine, he will be better than fine- he will have amazing gifts and challenges- and he will have you- and, in the end a lot of the stuff that you and I stress on until our hair is all gray, will be forgotten. Ok- I HAVE to go mop the floor and get off of this forum. PM me if you want to talk more! Do you have my personal email? eileen

Karen - So sorry for what you are going through. Fear of choking on food is a big pandas symptom- as far as actually choking/ gagging- I do think there has been some discussion on that on the pandas forum too- you may want to search for it. I have a picky eater (age 8) and a healthy eater (age 11) who both almost stop eating at all when they have pandas episodes. Here are things I do: keep small bite snacks available on counter all day, pack lunches with several appealing small bite options, let them have dinner in front of TV and prepare a tray of food for them (cheese& crackers, fruit, tea sandwiches, cubes of meat and cheese, veggies and dip, etc), snack on smoothies (ice, frozen fruit, kefir, fruit sorbet, protein powder). We really tried to never make food or eating a battle, I figured as soon as it went there we were done for. A big issue with my kids was making decisions, so I started just setting out a meal of lots of small bite choices- it seemed to make things a bit easier. I tried to bake a lot, and add whole wheat flour, flax and veggies to my baking. Thankfully these issues have subsided with pandas treatment. One more thing- both of my girls had to learn to swallow pills, and did so with Probiotic pearls. They are tiny pearls that go down REALLY easy- once they mastered this they moved on quickly to bigger pills. Hang in there- this is the worst time- when you have a good team of docs, support network of parents (who know what you are going through) and a gameplan in place things get easier- I would think this is true of any disorder/ illness.

powpow- I had a doctor (of course an adult rheumy who "can't" treat my kids, yet was interested and met with us with another doc) suggest low dose cellcept. He said they are having great luck with it for kids with lupus. He thought it would be a way to get out in front of the illness and prevent dramatic episodes, rather than chasing it and putting out fires. Never found another doc even interested in discussing.

Well- of course you are paranoid. But- I have two kids with pandas- youngest first, older one (and I could not f-ing believe it at the time) happened next. So I would tell you to run, don't walk, to your pandas doc- to at least get some bloodwork done, try some first line pandas stuff (abx and maybe steroids), and to have a game plan.... Hopefully- it will turn out that it is paranoia- some kids do have transient tics which amt to nothing.

Happy Thanksgiving!! I am beyond thankful for this board. Lats, and the friends I have met here have gotten me through some of the roughest times in my life, and helped me make the hardest decisions I've ever faced. This is an amazing group of "warrior" parents- who never give up! I am so thankful for every moment I have with my sweet girls. I am so looking forward to cuddling on the sofa with them and watching the (NYC) parade in the morning. I am thankful that although they have suffered, they have continued to grow and blossom in ways I have never imagined. They are wise beyond their years, and compassionate to no end. I am thankful for the time we spent in FL this summer at the Ronald McDonald house, as the time we spent in "the house that love built" was a life changer for our whole family! I wish everyone here some peaceful moments with their children this thanksgiving.

raven Just to confirm what the others have said. I have two pandas daughters who had strep and got ocd at the same time. The older one was mild, and hid a lot, so we didnt figure it out for months. The younger was debilitated by ocd fairly quickly, and we made the connection to pandas. It has been a bumpy road, but things are really good now (fingers crossed). My biggest piece of advice is to get one or two pandas docs on board asap, and fight episodes as aggressively and quickly as you can. The less ground you lose, the less you have to make up. We like clindamycin for strep, or possible strep. We like advil and steroids (although we have no tics- so you should consult your neuro) when behavior flares up. We find ERP (exposure and response prevention therapy) for ocd necessary. My younger daughter has some selective mutism and handwriting and spelling issues- we find when she is "healthy" these things are almost not even present, and when pandas starts to kick in, these things get worse. I would try to keep the kids on antibiotics (not clindamycin) until you see a pandas doc. I would also try dosing consistently with advil for a few days if symptoms get worse. I am just going to say it- and I know the repercussions of what I am saying (phone calls, expense, travel, etc)- April is WAY too far away for an appt. Things may not be great now- but if this is pandas, I can tell you, things can get WAY worse. Especially if they are already symptomatic, any illness, even a cold, has the potential to send things into a downward spiral. Hopefully this won't happen- but I cannot tell you how important it is to have a doc, that you have a relationship with, there for you and your kids. We see two pandas specialists, and frankly, I lay awake at night trying to figure out who else to see and what to do, if we cannot get to these docs when we need them. I don't mean to scare you. Just the opposite, actually- your kids can and will get better- things can get a lot easier- but you need an amazing doc on your side.

Both of my daughters had pex for pandas. Neither had ivig. We treated both, initially successfully with abx and steroids. When the abx and steroids a subsequent time failed to produce sustainable and full remission, they had pex. Swedo did 5 pex treatments over 10 days in the study, my girls had 3 treatments over 4 days. Both girls were classic pandas; no neuro or psych issues until ages 5 for youngest, and 9 for the oldest. Sudden onset of ocd with strep. Subsequent exacerbations with other illnesses. Both girls had high anti neurals on Cunningham's test. Neither has immune deficiency or any other test result of consequence. Both are physically healthy and do not get sick more than 1-2x per year. Both were covered by insurance, after many appeals and assistance from my dh's HR dept. We actually prepaid for one, and the cost was $26k. Our insurance company's negotiated rate was $5k- that is all they had to pay. (we were reimbursed our $26k minus the percentage we were responsible for). Both kids had immediate and long lasting results. PEX brought them both back to baseline within a month of the procedure- priceless! However, it is not a cure (for us). They have had subsequent episodes- we have handled those with steroids thus far. I would not hesitate for a minute to do pex again if needed. Also, it seems with the steroids it takes them quite a bit long, if they do at all, to get back to baseline. I think the pex is invaluable for this alone. Considering the suffering they had prior to the procedure, and how thorough it was- the procedure itself was quite benign. I am not saying it wasn't a stressful week- it was- but it was okay, I did it with the second child, and I will do it again (and again) if needed. The hardest part of the whole thing is getting a doc and hospital to do the procedure. Do you see Dr L? Let me know if I can answer any other questions.

We have used melatonin with both pandas daughters. It has been a lifesaver! Is it possible the pandas flare is the cause of the night time issues, and not the melatonin? I know how much the child and the parent needs sleep during a flare up. Maybe take a few days off, see how bed time is, and then try again for a few days. I would be SURE that it is the melatonin before taking it off the table (for your sake, if you know what I mean). Is it possible the dose is too high? My daughter takes .5mg. I give it to them once they are totally ready and in bed. Then I read them a story for 10 minutes. By the end they are relaxed and ready for sleep Both girls have night waking and bad dreams during bad pandas episodes. It subsides when they go into remission.

I have not seen symptoms get worse on abx with my two pandas kids. However, symptoms in pandas are always in flux, getting worse or getting better, so sometimes it is hard to tease out what exactly is going on until you see it several times. My kids did close to 2 years of daily zithromax. The summer I took them off of everything, with no change for the worse. Since I am a chicken, I do have them on 2x a week prophylaxis now. I have come to think that antibiotics are not needed in pandas unless symptoms flare. I am probably alone in this, however. But- if you do think they are at best not helping, and possibly making things worse- why don't you try a trial without antibiotics. For my kids the key to getting/keeping them well has been immune modulating treatments- pex and steroids.

Imk- This is so hard. I am sorry your son is struggling. I am typically not one to suggest lyme, as it was a waste of time for us. But- my kids have responded to pandas treatments. So it might be worth a TRIAL of combo antibiotics. I would not suggest continuing on the trial without concrete sustained improvement. A few questions: was your son sudden onset? Did he have strep? I know on the board we often look past these criteria, but it a situation where you are questioning other possibilities- these may be important. I would have reservations too- it seems like we should follow the paths that work. There are many patients of Dr B here, hopefully some will chime in about how long it took for them to see results. I guess I would stay the course with IVIG for a bit, if Dr B really thinks it will help. But, at the same time I would see if you could switch up antibiotics. I think many here have had luck with bactrim or clindamycin. I would also strongly suggest that you get some really qualified ERP support, and maybe consider a low dose SSRI as a temporary bandaid, if it works (low dose SSRI did not work for us). I would also see if you could add some steroids to the mix. My motto is to hit this thing with everything but the kitchen sink, as fast as possible.

Imk- This is a major issue for my younger dd when pandas flares. The biggest help for us has been medical intervention: pex and/or steroids. ERP is also another huge help, esp once medical intervention has started. My daughter's issues are a bit different. Sometimes she goes frequently, but never gets upset about not going. ERP is all about facing the fear. We have yet to do this completely with this issue- For dd her issue is that she worries (ocd) that she is not dry after using the potty. She has to check and recheck (an re wipe). Her fear is basically of the discomfort of being wet. Her exposure is to put some water on her panties and keep it there. This is purposefully doing what she is so afraid of. The process would be to do it longer each time, until it doesn't bother her at all. At the same time we work on reducing the rituals (not re checking, or re using the potty). For us, we have found that reducing the rituals is not enough- exposure to the fear has been key for us. We have found that when medical intervention helps, sometimes therapy is needed to get rid of the last of the ocd. We have tested for uti's- but it has always been clearly pandas. Bathroom/ urinary issues are a major pandas symtpom. But- its pretty easy to test for uti- so rule it out if you need to for peace of mind.... Good luck!

One week to the day of surgery, dd (who was 98% going in to surgery) woke up in a full blown pandas flare. We couldn't get to our doc for over a month A month long steroid burst put her back to remission at that point. I am still glad the T&A are gone. I would keep in contact with the doctor, and if you (hopefully not) see a flare up maybe do a course of clindamycin and then a steroid burst. Wishing you healing, and a happy thanksgiving!

I am not in "angst", but I am extremely concerned for new parents on this board. All I ask is that we call things what they are- that doesn't imply judgement. Unproven does not mean ineffective or harmful, it just means, well, unproven and unstudied by "mainstream docs". To be honest, I have a problem when mainstream methods are touted as a "cure" also. We just haven't seen this, don't KNOW it to be true, and probably will not have any clue until the next generation. I say this often when certain doctors tout IVIG as the only cure to pandas. It is not honest, and unfair to new parents trying to make decisions.

Quote: Every person will try their best to keep themselves and their children as healthy as they can. There are those who choose symptomatic relief with every cutting edge method out there IVIG, steroids, PEX etc.This method works very well with regular repetitions of these treatments and remission is often achieved.Its like organ transplant patients who survive and live a nice life on immune suppressing meds on a regular basis. Then there are those who look for a cure and take the only road that can lead to a cure- bioenergetic methodology.Its a road more and more travelled as chronic degenerative disease is fast becoming such a global epidemic. The problem is the Epigenetics which is a discussion for another day.... I take great offense to this post. I am happy for anyone who finds answers for their child- but lets at least be honest, and admit when we are dealing with completely unproven science practiced by a handful of doctors. You can in no way credibly say that you are achieving a cure with "energy medicine" and parents using traditional medicine are using a band aid. Your statement is at best in poor taste, but more likely unbelievably condescending and irresponsible. I have lots of thoughts and beliefs, yet I am sure to temper them, and speak reasonably and responsibly (keeping in mind there are new parents and some pandas patients on the forum). I consider you a friend, and in that spirit, I hope that I can call this out without you taking it as a personal attack. We have all been on a long journey and I have no interest in adding to anyone's pain. But more than anything I believe in honesty, and rational thinking.

I would follow Dr K's recommendations.

I am glad everyone is doing well with their different approaches. However, it is fair to say that all of this is "fringe" medical treatment. There aren't credible studies to back up what these docs are doing. If it works for you- great! I have no doubt they can hit upon the right thing for some people. However, when you or your child are sick, - it is easy to want to find answers, a cure. You have to be careful. I am VERY skeptical of docs who sell dvds, their own supplements, etc. But, I acknowledge that I am a skeptical person by nature. I am a humanist, so I really like to see some science and some acceptance in the mainstream community. However, after dealing with pandas, I know that sometimes you just have to grapple through the dark and figure out what works, regardless of what is accepted at the moment. I guess I am just trying to say- It is very important to have a dose of skepticism when dealing with docs. It is right that we question docs and methods on the forum- it will only help us learn, and make our kids better. Then make your own decisions, and continually re evaluate to be sure you are following a path that is working.

BoyIowa- That is a loaded question. This is the pandas forum- so I will speak a little more freely. My kids have pandas. Steroids have been a lifeline for us, and have enabled them to be well much of the time. I shudder to think where we would be without steroids. Pandas is an autoimmune disorder, so effective treatment is immune modulation- pex, ivig, steroids. This is what has worked for us. This is what the little existing science tells us. Lyme is very complicated. Many on the lyme forum make it sound easy, and a clear path. It is not always that way. There is not a lot of strong scientific research on chronic lyme and treatment. I did have my kids tested for lyme via Igenex, and they did show some positive IGM bands. We tried lyme treatment for a few months, with no change. I did not like giving my kids multiple drugs (and be urged to do multiple supplements) on the basis of one doctor. We saw another doc (former president of ILADS, BTW) and she told us that antibody tests are completely unreliable. She was concerned about the amount of medicines and supplements we had been recommended. She did some further tests, and confirmed clinically that my kids have pandas and NOT lyme, and that we should proceed that way. If your child has lyme- I guess steroids are contraindicated, as they would be for any infection. Steroids make it hard for the body to localize infection. However, if your child has pandas, the decision NOT to use steroids is a very serious one- IMHO- because it is one of the most readily available tools to fight this disorder. I believe in hitting every pandas flare/ episode as hard and as soon as possible. I could not do this if steroids were off the table. So- I am not telling you what way to go, I am just telling you it is a decision that you have to make. Do you want to treat the pandas or lyme, and I don't know your story, but what makes you think lyme?

I think a healthy debate/ argument is fine. It is silly to get mad and say goodbye- that you are not posting anymore. We are all adults here. Most of us are stressed out mom's, trying to help our kids. We need to keep in mind that PANDAS16 is the child- just all grown up now. Her view will be totally different. We have a lot to learn from her. I could concur with her, that my children have NEVER displayed any hallmark autistic characteristics, even during the worst pandas flare. Both girls are very compassionate to others. We have a few friends with autistic kids, and my kids are great with them. However, honestly, it would hurt them to have pandas compared to autism. They are still developing their sense of self (aren't we always). They don't like having something "different" about them. Although frankly, no one would ever guess they are dealing with any "issues". I do think a full remission is possible. I agree that there are learned behaviors, and do feel that those will take longer to subside, and take work to do so. However, the residual stuff my kids deal with (right now) are not really out of the realm of "normal". ALL people have "issues", most kids have "issues" (anxiety, impulse control, learning issues, add, physical problems, divorced parents, sick parent or sibling, etc). I try to put it in perspective to my kids- everyone has their own crap to deal with, you deal with it, and you move on.

My kids both had mild flares with loosing several baby teeth in a short period. I would suggest taking care of the tooth asap- extraction is probably the best way to be sure you won't have future issues. I would consider increasing antibiotics and dosing regularly with advil. I would also try to get an Rx for a steroid burst (30 day) for after dental work to calm pandas.

I pm'd you.