dcmom

I have two daughters with pandas. Both sudden onset. One at same time as strep infection. One mild onset (overlooked) at strep infection, and then major onset post H1N1. While we have not done the extensive testing that some here have, they have come up perfect on everything including mycoplasma, strep titers, IGA and IGG, WBC, lyme (via western blot not igenex lab). The only test that shows anything is the Cunningham test, which both had high anti neurals. Other than neuro symptoms, however, they are the picture of health. Frustrating- but at the same time, it is a good thing.

My advice is that when things are good, and generally improving: DO NOTHING. Although I would keep him on abx.

That glow (I call it sparkle), is the hardest thing of all to see them lose Enjoy it!

Interesting- would you consider that protocol? What type of prognosis, long term, does your doc give with his/her treatment?

I guess the question is, however, can HD (or any dose) IVIG remove/change the sequestered B cell clones which are the source for recurrences. I have heard- no. Nevergiveup- I am interested to know if your doc feels differently...

We have seen three things with steroids (I have two pandas kids): quick and maintained improvement improvement, followed by minor backslide post burst, which levels off to maintained improvement improvement (sometimes only mild) which we could not maintain post burst Totally frustrating- hang in there- I would ask about trying a second burst.

OMG Dr Lahita is a rheumatologist at a Newark, NJ hospital- sounds like he holds a top position, too. Has anyone ever seen him? I might call to make appt Monday...

Can OLE be taken with antibiotics?

Dr Susan J Perlmutter is a psychiatrist in NVA. As far as I know, she only treats with amoxicillan- but she is a good diagnostician with pandas experience- may be a way to get things going.

One factor to remember, strep is extremely prevalent in ALL elementary school kids.

So- to clarify something... A good response to antibiotics (no herx but improvement in symptoms) would indicate it is less likely Lyme? Maintaining remission from symptoms for a decent time period- unless/untill triggered by new illness might again mean Lyme is less likely. Sudden and dramatic onset- the "hallmark" of pandas- does anyone have "information" (rather than personal opinion or experience) of how frequently this happens with Lyme. Thanks!

Normal, actually excellent, immuno numbers. No history of repeated infections, robust physical health. I am currently thinking we are dealing with Pandas, w/o Lyme. Would like to have another workup- can't bear to put kids through it since they are well and happy right now.

My two cents on pex vs ivig, fwiw: I believe for most of our kids, ivig and pex are not a "cure", rather a tool to bring them to "remission". I don't really think anyone knows which works "better", as that would take a really large, detailed study (considering the differences in presentation, severity,duration, etc of illness). I know that Dr K seems to prefer IVIG- but, frankly, I don't think he has done/ or probably has the ability to do/prescribe PEX- so that would certainly seem to be a factor there. My only contribution here, is that for many/most, pex has an immediate/almost immediate effect, vs the possibility of worsening (or turning back the pages) for 6 weeks before improvement starts. Considering my thought that these procedures are not a cure, and that the child has most likely been suffering for quite some time by the time treatment is secured, I think the kindest treatment is pex. I (as everyone) HATE to see our kids suffer a minute more than absolutely necessary . Of course if the child has a documented immune deficiency (probably beyond failed pneumococcal titers) then IVIG may be warranted- but why can't that be done post pex. This is why I am so frustrated that no one (besides Dr L) does pex for these kids. I am frustrated there is/was going to be an ivig study. When my dd had pex, she was in crisis. We absolutely did not have 6 weeks to wait (or get worse)- as I am sure is the situation for most. Ugh!

I sent an informal email to all of the parents in dd's class last year. I just gave them a general idea that julia has an autoimmune disorder called pandas, that was triggered by strep. I said that she is doing great, and on antibiotics that should prevent her from getting strep, but, that she does have an "allergic- like" reaction when she is around strep, and it makes life easier for me to track her health issues if I know strep is going around. I mentioned the antibiotics- and made myself sound very nonchalant- as I didn't want anyone to feel responsible for her health. I didn't detail pandas, but offered to share more information if anyone had questions. This basically started an email loop, where parents ended up hitting reply all when their child had strep. When all parents in the class saw someone had strep, it pushed others whose kids were just "tired" to get checked. There was a lot of strep last year- and the parents were GREAT about it!

Chemar- I agree, and am not interested in a divide, but what I am interested in is a supportive discussion about the differences and/ or similarities of Lyme and pandas. I think most could agree that Lyme and pandas are two different illnesses; some may have pandas, some may have Lyme, and some may have both (and in this case one complicates the other). The etiology, mechanism, possible extent of symptoms, helpful doctors and successful treatments for both are different- which is where I think I understand PAndas to the best of my (and science's) current ability, but my knowledge of Lyme (and how it may differ) is very limited. I am very curious for those initially diagnosed with pandas, and now Lyme, whether they think their initial diagnosis is wrong. This is important to me, well, because I have two daughters with pandas, and I have the need to know everything I can. From what I am being told about Lyme, it may cause autoimmunity- but that will resolve with proper treatment. From all I have learned about pandas, it becomes an autoimmune disorder that may not resolve.

Pmom I understand your passion/ as well as the passion of the Lyme parents- but we are ALL here for the same reason- to help our (and other's kids). Let's keep this thread to discussion of science, fact, symptoms and experiences that will help us all learn. It is terrible what you went through, and important to let others know. For Lyme and Pandas there is no absolute test- which means we have to go with our mommy instinct-which is hard. We need to be able to discuss this w/o hard feelings.

Elizabeth- Yes- I think a lot is just strep: there are many post streptococcal disorders: rheumatic heart disease, sydenham's chorea, psoriatic arthritis, etc. This is nothing new. It is not a stretch to believe pandas is another post strep disorder. I think the suggestion that it can't be, is what causes some of the controversy. Everyone sees things through their own lens. We are good now, with a strep trigger, and typical pandas treatments. So to me it seems easy and clear to understand pandas. Others have not had the resolution, and had to travel longer on the path to find lyme (or other issues). Because some (or even many) kids have lyme, it does not negate pandas. What it does is bring up the question of- does your child really have pandas? or was it lyme all along? And- what if anything- can help parents in diagnosis between pandas and lyme....

Yes- by "classic pandas", I mean pandas. Pandas as defined by Sue Swedo: pediatric autoimmune neuropsychiatric disorder associated with streptococcus. Pandas as the belief that a genetically succeptible host (think rheumatic heart disease and sydenham chorea) contracts (maybe a specific strain of) strep which triggers an autoimmune reaction. This autoimmune reaction can subsequently have less specific triggers. So- my question is to the parents who are now dealing with lyme (and I am thrilled that you have found a path to healing, and only want to learn, but for me learning comes by lots of questions...): Do you think your original diagnosis of pandas was incorrect? Of course, pandas and neuropsychiatric lyme are not the same thing (however, theoretically a child can have both. My kids have pandas, it is reasonable to think at some point they would get lyme...).

okay, I want to slow and calm things down, because I feel this is an important discussion, and that Johnsmom's original question is getting lost. So- I think all/most of us on the board can agree that a chronic and/or neuropsychiatric lyme is real. We have ALL been through heck with our kids, and REALLY want them better. We are ALL tired of having to be the medical researcher and decision makers, with lots of docs and others not standing by our sides. This is what PANDAS and LYME have in common. I think the question of what else they have in common, is what we should be discussing productively. There is really NO room on this forum to discuss the validity of either disease. But- there is room to discuss diagnostic criteria and treatment options- and that can be really helpful to ALL. So- I will say I am a pretty level headed person, even throughout pandas. But- yes- the many posts on pandas kids being diagnosed and treated for lyme, does cause some mild panic inside. I am not saying the posters caused the panic, but the nature of being a pandas mom- many things can bring up a little panic. So- for example- my kids (so far) are "classic pandas"- really healthy, overnight onset, total remission with pandas treatment- yet it is now an autoimmune condition for them- where if they have an immune challenge, they have a flare of ocd. Otherwise, they are robustly healthy and energetic. So, while they were only tested for lyme with one standard test and it was negative- I think they don't have lyme. However- we live in deer country- so I worry everyday that we will get it So- I think maybe Johnsmom is looking for the same info as I: how does lyme differ from pandas? and are many of the kids now diagnosed with lyme, actually not pandas? So in other words- if you had initially treated for the lyme (with antibiotic cocktail)- would things be good, and would there be no need for pandas treatment? Lets try to keep it supportive- and full of scientific fact, or immediate personal experience- please

For a lot of us, pandas unfortunately becomes pitands (my girls included). In these cases, I can certainly see that lyme would/ could cause a pandas episode. Neuropsychiatric lyme seems to have a very similar symptom list to pandas (and pitand). So, I guess what I am asking is, Most neuropsychiatric lyme cases are not pandas (and I am thinking not pitands), right? I am wondering/thinking that it is a different mechanism that causes the neuropsychiatric symptoms? Possibly, some children on the forum who were originally diagnosed with pandas, did not respond to treatment, and then got a lyme diagnosis were misdiagnosed from the beginning? In pandas (in a nutshell), the immune system creates autoantibodies that attack the basal ganglia. Is there a different mechanism in neuropsychiatric lyme? AND do those with neuropsychiatric lyme typically have other areas affected (CNS, joints, etc). I know this post is sort of lyme-y, but I think it is crucial for pandas and lyme parents to understand the mechanism behind the symptoms, and really how to differentiate the two. It has been stated so many times by parents that their pandas kids are now diagnosed with lyme- and frankly, it can be confusing to all. I have learned a lot about pandas (unfortunately) over the last two years, and thankfully my girls have responded beautifully to pandas treatment. This leaves me, for the moment, confident in our diagnosis, and not overly concerned with lyme. BUT- it would certainly help me to be armed with some scientific data- rather than just the daily readings that another child on the forum has lyme- which always gives me pause. I have tried to research the mechanism of neuropsychiatric lyme- but there is SO much out there, and I just don't have the energy to do it- so I am hoping someone else already has

So, my question is: Do the kids with Lyme, also have pandas? Or was it a misdiagnosis? Does anyone know the mechanism for how Lyme causes neuropsychiatric symptoms? Thanks!

I am sorry for your frustration- and will be interested to see what advice you get. Was your payment for the initial consult? In reality a few hundred dollars probably covers one phone consult. While it is not fair that you paid money, and are not getting what you seek, I am going to give you some "tough love". Unfortunately, most of our pandas docs are fabulous at diagnosis and treatment- some (I think) take on more than they can handle (with good intentions). This is just a fact, that probably won't change. I do think that probably the docs should not take on patients that are phone consults. There are a few hard realities: it is a REALLY hard illness to clearly diagnose, and treat successfully- I just do not think it can be done properly only on the phone. Even as a parent, if the doc was willing- nothing can replace an exam, and a face to face meeting. The other reality of their day is that they run late- and a patient with parents sitting in front of them in the office will always take precedence to a phone call. I think, if there is ANY possibility, you should try to seek a pandas doc in person. I am not trying to be harsh- I just hate to see you waste time being frustrated with the doc, when you need all of your energy for your kids. Where do you live in VA? Maybe someone could suggest a local doc?

JAG- I would not give up. Is Oakbrook "in network" for your health ins co? We had to pay up front for pex at Gtown. We paid $26k, and at the time thought we would very likely be denied coverage. Two weeks after the procedure, we were approved, and our insurance co sent US a check for $5k. I called everyone asking where I would get the other $20k. My insurance co told me that since Gtown was "in network" they were required to refund us the difference between what we paid, and the contract fee. They did take their time, but without much work on my part, Gtown did send me a check for the $20k. I think you should call the health advocate, or whoever is appropriate (tpotter may know) in the state of Illinois. Oakbrook "contracted" a rate with you, and there is NO reason they should keep your insurance money. I KNOW it is so hard to fight this and pandas- but I know you will feel vindicated if you can do something about it.

Fixit- I hesitated to answer, because we haven't dealt with tics, only ocd- but I will offer my 2 cents FWIW. You have a lot of info in your post. I think the T&A was a good move, although (from our experienc) don't know if that alone will bring on remission. It sounds like you have some issues that you are not sure if they are resolved: clostridia and allergies? I think treating, getting these under control will help with pandas symptoms. I would try to do this in the most gentle, but effective way. I would hesitate to continue the clindamycing for too long. I would try short term advil, and consider a steroid burst (if that has been successful before) to see if you can push the improvements forward. Pandas boggles the mind. But, I do think it is important to be somewhat methodical about your course of treatment. Lay out your plan, and then follow it without letting your emotions make the decision. Our plan looks like this: daily antibiotics if we see a flare up: increase antibiotics and add advil for a week if this is not working: we try a steroid taper when we did all of these things, and still did not see progress- we did pex I think you need to look at behavoirs on a weekly trend. Healing definately takes time- and it is a balance between giving it the time it needs, but not letting the episode go on too long. IF you are seeing even baby steps of progress weekly (with some sawtooth), I would take that as a good sign- and stay the course. If you do hit a plateau for a month- I would then consider a steroid burst. Remember, IVIG can often make kids worse for a significant period of time- so I would really evaluate where you are before jumping in. I don't think PEX has ever made anyone worse- but remember for most the progress with this procedure is also not immediate. Good luck...

We did eventually get aetna to cover pex- but we and dh's company fought for approval through many denials. My husband's company is self insured- don't know if that makes a difference. It was a horrible process which I am still angry about, I don't recommend Aetna- yet in the end we did get what we needed.