dcmom

Hi Nancy My daughter wants to be a neurologist! But she is only 11...... I just think we don't have enough clinicians really looking at this. Yes, we have researchers, and a few clinicians (mostly set in their ways to some extent). We need some fresh eyes....

We need to find the youngest, smartest and wealthiest pandas parent- they need to go to med school and become a doctor. This way we might finally get a doc that can really treat this disorder correctly (sorry- this just came to me- its a daydream, really, wish it could be me...)

Dear Mom-me- You talk about distraction a lot in your audio. We recently did a three week ocd intensive in FL with experts on ocd. They were very clear that "distraction" is absolutely not the solution for ocd. The clear and proven strategy for ocd is ERP- which is exposure and response prevention. It sounds like you talk about this a little in your audio- yet you use the word distraction- which can be confusing to some. What is recommended is to face your fear, like you said. This is to embrace the worry, and think about it, talk about it, and do what the worry is- in small gradual steps- so that your child becomes desensitized or bored with the worry. The idea is we cannot stop the mind from having these thoughts, but we can change our feeling when this happens. How we do this is to "expose" them to the thought, over and over, until it doesn't bother them anymore. I would say- it is preferable to find a psychologist who has experience in ERP to help with this. e

Well Jt's Mama- PEX is hard to get. There are likely two docs that will do it; one in Philly, on in DC. We had it done, and had to pay in full up front- that cost was $26k (we did eventually get insurance covg). Other parents here can give you a closer estimate for IVIG, but I would budget $10k

have you considered IVIG? (we haven't done this, but if the immune system is impaired, it may make sense, and you may be able to get it covered).

oivay- my 8 yr old's story very similar to yours.... positive strep no titers relapse post T&A full, long term remission with PEX we now see relapses, she had strep this past april I feel if we are able to jump on it fast with steroids, she can do well would do pex in a heartbeat if needed, wish it wasn't such a chore to get it done Georgetown limits the central line to a max of 5 days, which may be why they do less exchanges, after day 5 risks of central line (infection) rise dramatically. Agree with ALex- if ANY surgery, T&A or dental work are on your radar- do it prior to pex. After pex avoid anything that may rock the boat..... Alex- glad to hear things are going well (or better)...

needcoffee- the infections can certainly derail things (both of my pandas kids had strep in April)- but the fact that you caught it right away, and treated, is a positive thing. If steroids are an option for your kids- they might be worth a try. We find our girls need something, like steroids, to tamp down the immune process. In any regard, time always seems to be part of our healing equation- so try to be patient- and your are most definitely not alone.

oivay- can i ask- how old is your child, and was it done through a central line? thx? Melanie- My kids had it done through a central line. THe procedure was fine, the line was put in under anasthesia. I am just saying that the only risk with pex is not the exchanges, but having a central line, and the normal risk with anasthesia. I may be incorrect, but I am thinking with an adult, it might be able to be done through a peripheral vein (if the flow is good). This removes any risk. But- I would and will still have it done via the central line with my kids. We had it done at georgetown, and they put the central line in the femoral artery (leg)- which I would request. The other option is the neck. With the leg, you put a blanket over it and forget about it.

colleen- how are things? It's been a while- hoping that means things are going well....

Have done it with both daughters. Single most effective thing we have done by far. Wish we could do it every flare up. Your son is adult size? If so he can do w/o central line- if that is the case I think it's a "no-brainer"- all the risk lies in the central line. Where might you have it done?

Jag- I think our hardest time of the year is Dec thru March, although last year my girls got strep in mid April. We are of the philosophy of "remission" and "management". Is that what Dr B seems to think also? What treatment do you use for the "periodic clean-up"- I am in total agreement with this. We have lots of times (well 2-3, times 2 kids) seen them have an increase in issues, although still generally good, stay at this level for a month plus, and then have a drastic increase overnight. So many times during these minor increases, I am too nervous to "rock the boat" so we just deal with it. This year we are trying to be more proactive- so I may jump on those mild increases if they go for longer than a week. I am assuming you do IVIG? Do you see a "worse before better" with these clean-up ivigs- that is always what stops us. Thinking of seeing Dr B- we're in NJ, so it would be easy- just hate dragging the kids to docs when they are well.

Agree with Kim- for probiotics we use theralac (from Amazon). My kids are currently on antibiotics twice per week. Our current protocol is that if they seem to be having a symptom increase, or if they get sick, we up the antibiotic and do regular advil dosing for 5 days. It is hard to tell, because I cannot see what would have happened, but I do think they both had a bump in the road recently that amounted to nothing (maybe because of this protocol). Also- if your child has trouble falling to sleep (many pandas kids do), try melatonin. We use source naturals sublingual drops, 1/2 hour prior to wanting them asleep.

Peg- you are an inspiration to all of us. Even if your daughter's condition is not the same, we can ALL learn a great deal from you in how to parent a child through difficult times. Pandas 16- is actually the person with pandas, not the parent. She has strong opinions, and a great deal of experience and information to offer all of us. I agree with (I think it was Mom with ocd son) in that the major impact of "permanent damage" is not really permanent, physical or structural- it is learned. We have seen this with my kids over and over. If a child has undiagnosed or improperly treated pandas, starting at a young age, and having either several episodes or long term episodes- undoing that "learning will be a major challenge". My kids have had severe-ish episodes, but have been aggressively treated within a month, and still have had to spend a little time (therapy) "unlearning". I may be in the minority, but I am ok with the arguing. I look at it in two ways- we are a family here- a family can and will fight, sometimes over serious stuff, sometimes over nothing- but the bottom line is they will make up- and they are really THERE for each other. I think the fighting comes in that we are all very passionate (not to mention stressed) and really want to help. Also- we are all learning and growing- and real growth does not come without some pain So- let's argue! We should probably just keep it to the facts, or experiences, and not personal or inflammatory remarks.

nola- I have two daughters with pandas. I live on the east coast, so I can't really help you with docs- but I have a few suggestions: - IMHO it is really helpful to have a couple of pandas docs on your team. Most have slightly different protocols, and sometimes it is necessary to have access to them all. Ideally a neurologist and an immunologist would be great, and if there is ocd present a psychiatrist (who has pandas experience) and a psychologist are also necessary. - I would suggest a thorough battery of tests by the immunologist and neurologist to rule out other possibilities. PANDAS is a clinical diagnosis, so ruling out other causes of your child's symptoms is crucial. - Many parents her will tell you to be very aggressive in looking for chronic infection. In my opinion the jury is still out on this. We haven't found chronic infection to be an issue in our kids, the theory of pandas is autoimmunity, triggered by infection. However, you can do your own research, listen to other parents, and decide for yourself. - I believe in a fairly aggressive course of treatment for pandas which would look like this: 10 days of clindamycin, 30 days of zithromax or augmentin at treatment dosages, after the first month of antibiotics a trial of a month long tapering steroid burst should be considered (while remaining on abx). Depending on your results up to this point, you may want to go in different directions. If there is NO movement of symptoms, consult with the doc on the confidence of the pandas diagnosis- consider testing for chronic underlying infection and/or move toward more serious pandas treatments. If these treatments have brought your child back to about 90%, stay on this course, changing very little, keeping things calm, and give it time. If these treatments have improved your child, yet not enough, then quickly move toward IVIG or plasma pheresis (we have also used IV steroids- this is not done very frequently- but in my opinion is a great first option of the more invasive treatments). Basically with pandas, the theory is: you need to address the infection, and then you need to shut down the autoimmunity. Many times, esp if your child has been sick for a while, the infection has passed, and you are dealing with the autoimmune aftermath. You will hear many opinions here- the ultimate advice I can give you is to GO WITH WHAT IS WORKING. Try something for a month, always have your next step in mind, if your current treatment isn't working, move on. All the best.

Hi everyone! I don't want to jinx in, but things have been relatively quiet in my house Over the last six months, I have started feeling very uneasy about using meds and supplements, and have worked to pare things down to what I feel is needed. Both of my girls are on probitoics (1x a day), antibiotics (2x a week), and vit D (500mg/day). I do also give them melatonin at night, to help them sleep. My younger dd (45 lbs) takes .5mg, and my older dd (85 lbs) takes 1.0 mg. So- I am wondering about the melatonin. Selfishly, it is great for me because they easily go off to sleep every night. For their health, I think sleep is very important- so I like the benefit of the melatonin. But- since they are healthy- I don't really think they NEED it- so I am wondering- keep them on? wean them off? Has anyone seen any studies or credible literature on the longer term effects of melatonin? Any thoughts? Oh- and for newcomers- My kids both have a hard time getting to sleep when in an episode. Can be due to restlessness, ocd, anxieties about next day or about sleeping alone. We have found melatonin to be a LIFESAVER. For my kids, we give it to them about 1/2 hour before we want them asleep. It really relaxes them, and gets them ready to sleep. We use Source Naturals, orange, sublingual drops from Amazon. We use the lowest possible dose. Although we don't have this issue- it apparently doesn't keep the child asleep if night waking is an issue, however, I think there is time release melatonin capsules you can find.

My kids also have no correlation with sugar, candy and behavior. We have always tried to eat healthy and organic. Since pandas struck- we really try to do EVERYTHING, including our diet, in moderation. So- we never have candy around the house, but yes- I make cupcakes and cookies for them. For halloween, they can eat a few pieces that day, and the rest is given to them in their lunch, one piece a day. (phillypa- I am guilty of paring down their loot by snacking on candy, myself!) If we found a correlation- we would change things up. But- after having two girls with pandas, going on three years- one of my most important goals for them is to have a normal, happy, carefree childhood. For us, luckily, this includes eating Halloween candy.

Browneyes- My older daughter started her pandas journey (and was initially her main symptom) with stomach aches. She would complain of daily stomachaches, however there were no outward symptoms (gas, bloating, consitpation, diahreea, etc). In the end, this is what we determined- these stomach aches were a "sensory" issue. She would complain when she was hungry, eating, and after she ate, or if she had to use the bathroom. OCD got wrapped around the sensitivity, labeling it stomach aches, and starting to cause her to avoid going out, eating out, etc. All of this went away upon diagnosis and a month of steroids (with her other symptoms). This did not come back with subsequent episodes, however the ocd morphed into fear of getting sick or vomiting. She is better right now, however still gets a small moment of panic with stomach issues. We did lots of GI testing, but stopped short of endoscopy. GI doc felt everything was fine. I am not saying this is the issue, I didn't even read the whole thread- just wanted to shoot this out in case it made sense for you dd. eileen

I think there is an issue with steroids and any/ many chronic infections. Steroids make it difficult for the body to localize infection. However, a month long steroid taper is not, from my info, considered an immunosuppressive dose. I was told to go ahead with steroids, while on antibiotics, for pandas, even with the possibility that my kids had lyme. I doubt you will find a credible study or paper on lyme/ steroid use, as chronic lyme is not currently a mainstream medicine issue. If you want to research, I might look in general at steroids use with infection. I think, at the time, the decision will be much easier. If your child has another episode, and is in crisis, you will have to look at the risk/ benefit equation. IMHO it does not make sense to let a child suffer with acute neuropsych symptoms, and let their brain be attacked, for fear of a chronic infection (that you have been treating). Either way- I am also a plan ahead person- but I think some of these decisions have to be made in the moment. Lets hope you don't have to face this.

Beesknees- Of course you are welcome- that seems like a silly statement. I think the major issue that irks pandas only parents, are the inflammatory and fear inducing statements that are made, and where fringe medical practices are insisted to be absolute truths. It is not lyme- it is the way some statements regarding lyme are made on the pandas forum. Of course we are all in this boat together- and frankly, I am suspect of anyone (or any doc) that insists they have all the answers.

I am going to add our story, and try to bring the thread back to the original question..... I have two daughters with PANDAS. Both had sudden onset of ocd (with other symptoms) at the time of positive strep culture. Both have responded very well to pandas treatments, however, it has not always been smooth, and they do relapse with triggers other than strep. We have taken the approach of aggressive management. My personal opinion is that this is an autoimmune disorder, with a possible genetic vulnerability. While no one would love a "cure" more than me, I have begun to feel that spending my days yearning and searching and experimenting for a cure is a mistake, and that I need to focus all of my energy in keeping them in remission. So, last year, when the forum was on major lyme overload- I started thinking. I started wondering if my kids could have chronic lyme, or, if maybe chronic lyme treatment was the key for PANDAS. We decided to pursue Igenex testing, partially hoping to just put it to bed, partially hoping to give lyme treatment a try. Both of my girls came back IGG negative, IGM positive. It is a long story, but here are the final results: all mainstream docs told me lyme was not an issue for my girls two docs that do treat chronic lyme, and are connected with a well respected lyme researcher agreed that lyme was not an issue for us an llmd diagnosed them with lyme we tried multiple antibiotics on both girls for several months. We had no results- no herx, no improvement, no worse, nothing. Eventually, I became TOO concerned with the unintended consequences of all of the meds. At the same time, both girls contracted strep while on multiple abs, and I realized the pediatrician would think I was NUTS (my peds are pandas believers- no issue there, or with one antibiotic.) We discontinued lyme treatment. Lyme treatment made no difference for us. What has made a MAJOR difference in my kid's life has been steroids. This is why I get SO concerned about the lyme/ pandas issue. This is why it is very important to get it right. Steroids are a MAJOR tool to manage/ treat pandas. Taking steroids off the table for fear of lyme, if this is not the case for your child, is a tragic mistake. My kids are as healthy as ever. They look great and feel great. Their ocd, right now, is very minimal. I am certain they will relapse, and we will handle it. Over the summer my girls took NO meds, no antibiotics, and did great. Now, they are on antibiotics 2x week (prophylactic), probiotics once per day, and normal child dosing of Vit D. This is it. My kids had no neuro/ behavior/ cognitive issues prior to pandas. They had sudden onset (over 4 weeks) of ocd. They had confirmed strep infection. Maybe the mistake on this forum is that we open our doors to everyone and want to see pandas everywhere- and so therefore we continually insist these criteria do not need to be met for pandas. Maybe this is why so many were misdiagnosed as pandas (autoimmune disorder) when what they have is lyme (chronic infection). I am personal friends with some of the lyme parents, and am interested in their perspective and personal advice. I do, however, take offense to posts that insist on information that puts fear into others, and states theory and hypothesis, and thoughts of a small group of doctors as fact. Lets agree that this treatment regimen of lyme is not mainstream medicine. I am not saying it is incorrect, and am not saying it is not helping- but it is not mainstream healthcare/ science. I do feel it is very hard to close the door on lyme. We have done so by some common sense (thinking about the clinical symptoms), and by trial and error, and in the end, following what works. I have read many things on lyme- we know obviously antibody tests are inherently flawed. I have read something about how a HUGE percentage of people have been exposed to lyme- I can believe it- but then how would one determine if lyme is the problem, or if tests may indicate lyme exposure, yet there is another illness at play. If one has pandas, and are treating lyme- how would you know when to stop- because theoretically you cannot use symptoms as a guide.... It is very complicated, and there is great meaning in a diagnosis and a label- and that is treatment. It is important to get it right- because as I (and other pandas parents will say) steroids are a literal life saver- however, lyme parents will tell you they are a danger. That is the issue (in my mind) in a nutshell. I hope this is a calming, and not confrontational post- because I didn't meant it that way. Our story is different than others- and think it is important to share. I agree with LLm's post that different tones, and wordings should be used according to what board you are on. Frankly, that is key. I don't think anyone has jumped on llm discussing lyme on the pandas forum- but she doesn't state that our kids' are basically doomed if we don't treat for lyme. We have more in common, than what separates us. WE all need emotional support, and ideas on how to deal with our kids and their issues on the day to day.

I have been holding back posting, although I do have a lot of thoughts on these issues- but Wendy- I think what you said is key... we should post our experience, as that -our experience. We should try to be as clear as possible about where info came from, and realize, just because one doctor believes it, does not make it fact. I think, we SHOULD argue- it is normal, and we can learn things from the argument. We are ALL passionate, smart, and stressed. I think it is just important to keep the argument in perspective, and remember that we are all trying to help.

We have had the best luck with clindamycin. My penicillin allergic, and non allergic pandas kids used it for strep. It is often used to treat a carrier state. We did a course of 10 days. We have to use something after the antibiotics to calm the immune system. Steroids have worked well.

I don't have time now, but I am going to send you a PM tonight. Can you say what made you test for lyme?

My daughter had just turned 6 when she had her first steroid burst. It was a month long, tapering dose. It was amazing. She was completely back to herself on the burst, plus an increased appetite (which for us was a blessing, because during pandas flares she barely eats, and she is very thin). I have not heard of steroids causing tics, and we haven't had tics with pandas, so I cannot comment. I have heard of steroids causing psychosis, I think it is rare, and I do think if you remove the steroids they get better (psychosis goes away). Certainly, steroids come with some side effects. There are risks of long term steroid use. But- a month long taper is given for many issues, not just pandas. It is NOT considered long term. Frankly, I don't know where we would be without steroids. They have been a MAJOR tool for us in fighting pandas. We did pex once (which was great, but not practical), but have not had to repeat it, or do IVIG because of steroids. In my opinion, in a risk vs. reward evaluation, steroids are an easy choice. If your child is doing well, or continuing to improve, however- I would not do steroids at that time- my theory is always, it things are moving in the right direction- don't rock the boat.