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One had it about 4 months later, when a new symptom (anorexia) appeared suddenly. She had a saw-tooth improvement after that and is doing well now. She is also on full strength Zith, Augmentin, low dose clomipramine and completed 3 weeks of intensive ERP at USF about 9 months ago. The other had IVIG first, (no significant improvement) pex 2-3 months later (improvement at one month). Pex was repeated 5 months later and again, more improvement at one month. She did get another IVIG one month after the second pex, but really did not see a whole lot of help from it. She is doing better after intensive therapy also, though still struggling. I know you have older kids, right? Please consider McLean OCD program if they get to the point that therapy might help. I cannot stress enough how helpful the therapy tools are. At this point, there is no "cure" for our really sick kids. I think we should do as many helpful things we can do to equip them for the best chance at healing. For my family they are, in this order, I think: pex, steroids, CBT/ERP, clomipramine (low and slow, on that one- though it is not an SSRI) and maybe abx. IVIG maybe, but for my kids it was such a slow improvement and saw-tooth, I could not attribute it for sure to IVIG. My kids were 12 & 13 at the time of pex, btw.

I wanted to suggest that any titers following IVIG (even several weeks after) are not really reliable. If you have the chance for pex, go for it. It was so incredibly helpful for my children~ two of whom had it last year. Best wishes.

I am so genuinely glad that she is being helped some by the SSRI and CBT. And glad the infection issue might be old news! I am not sure how to know if steroids would be good or not- but for my kids (in exacerbations)_ the steroids are so helpful. Like night and day~ Maybe see the ENT and see if he has some ideas for that sinusitis~maybe if you can get allergies under control and keep her unexposed to whatever it is, she will heal more! The PANDAS doc we see only has given us a month or more even in steroids- though 2 of my daughters (the third has not been checked) has pos ANA screens and other autoimmune markers, so maybe that is why? on another topic~ did Rothman center address intrusive thought OCD, by that I mean the horrible (violent, sexual, evil, whatever) thought kind, not "the food is contaminated" intrusive thought?

My daughters' had IVIG in 2011 for post-infectious encephalitis. We have CIGNA. One was covered (done at the hospital) and the other was done in Dr L's office, we paid OOP & were reimbursed a fair amount. One of my daughter's also had a "footprint" approval for monthly IVIG and IV steroids for encephalitis- it was recommended treatment by Dr L and also neuros we saw for a second opinion at another hospital that is sort-of PANS friendly. We only did one or two of the monthly treatments before we changed our approach, anyway. this was all in 2011, though. I heard that CIGNA is covering less and less now. Please do not feel like IVIG is your only option if you have to pay OOP and cannot afford it. Maybe, just maybe, if the trial goes as well as we all hope~ it will be standard covered treatment soon! edited to add : Sorry, just realized this did not at all address your question.

I would be interested as well~ one of my children is now going to school also and I would love to have something to hand the very kind principal. I am thinking of the recent Boston Globe article, as it is very reader-friendly and interesting== not too much into the controversy & medical angle. any other suggestions?

I do not have a PANDAS doc for you, but I wanted to STRONGLY suggest you consider keeping the expertise of Rogers Memorial hospital in Oconowomoc, WI in mind. They are experts in CBT and OCD and even hosted several PANDAS docs this fall for a meeting. In my experience (2 severely affected PANDAS children) both PANDAS medical treatments & traditional therapy have brought them to healing! Rogers may have an outpatient therapy treatment program as well, maybe at a campus closer to you. We came from all the way across the country for their care and would do it again in a heartbeat!

where are you located? We saw an LLMD in Fairfax Virginia- she understood PANDAS/PANS as well. Some see Dr Paul Beals et al in Annapolis, maybe? Dr L referred one pos Lyme teen i know of to Dr Charles Jones in CT.

how old is he? would he qualify for the NIH IVIG study? go to clinical trials.gov and search PANDAS I am thinking the multiple strep / exacerbations might be an excluding factor for him. Would a phone consult with Dr T get things rolling quickly? Perhaps advice for parents and practictioners would be a good resource to print or take to your GP? It give antibiotic recommendations- maybe some place they woudl feel comfortable doing to help out now, while you are waiting for your next step, whatever it may be.

Thanks for posting this. I am going to look into it. My "other" kids have been through HE-double-hockey-sticks watching their sisters devoured by PANS. Thankfully, I think we may never go back to that time, but damage was done and we are trying to recover our family. The siblings will be on earth longer than us, the parents, and I hope my children will be able to support one another as adults. This looks like a great resource.

everyone listening????? who is Marcel Cairo? Forgive me for not knowing. I like that strepmonster.com website.

I would agree that ERP and learning OCD/anxiety coping skills helps this. I would strongly urge this parent to try to get some very good CBT/ERP therapy to help the child stop this. My child also binge eats when she is anxious or sad, whereas the rest of the time she is hardly eating anything (really). Today, when I asked her to not get on the computer and set off a big meltdown. She later pointed out that the computer time (she limits herself to 30 mins or so quite well) was a positive coping skill and since I said no to that, she could only do a "negative" one- cutting. She is wise beyond her years (learned it all from intensive CBT!) I realize what junkyardjean just advised, which is that by redirecting her pain, she could avoid cutting. Of course, I screwed it up! Now I know to let her use her "good" coping tool (netflix) next time. I do not "get" cutting, but I guess I never well. Seeing your child do this makes you scared, angry, frustrated and hopeless/helpless at the same time. I wish that no one would have to deal with this sad act.

Thanks for sharing this, cobbiemommy! This story is really interesting & there are several more like hers. If you look up NMDA on youtube, there is a video of one young woman in her hospital bed, there is video from an AAN Film Festival " a new kind of encephalitis". When my daughter was tested (and was negative) for anti-NMDA receptor enceph. one of the testing doctors said he thought there could be an entire subclass of encephalitis caused by other autoimmune factors not discovered yet. They saved her CSF in case more testing options show up later. Perhaps some of the PANS cases here without obvious causes, but with responsiveness to normal autoimmune therapies, are caused by these unknown factors. In fact, they did not consider my child PANDAS (no strep) but autoimmune encephalitis. Makes no real difference at this point, but who knows? Maybe in a generation more researchers will figure out the real cause for some of our kids! The author of the book mentioned is featured in Readers Digest this month. Interestingly enough (or maybe not "brain on fire" is how I have described my daughter's condition at her worst. It was the only close description I could find. In fact, I used it yesterday at the psychiatrist !

I will be devil's advocate, too - playing off LLM Remember, there are people who are NOT on this board= because they got better with abx, or one IVIG. They moved on. Also, he did not say "cure" he said 80%, right?Technicality, I know- but, perhaps under the circumstances- which I do not know- maybe you can post more info- your child is a good candidate for a "cure" Your child is 6, is it clear PANDAS criteria? Please take this as a mom to 2 children with severe PANDAS- who have never seen Dr K (except at the OCD conference) and who did not find "cure" from IVIG, or lasting cure from plasmapheresis. Though, all combined, plus intensive therapy and steroids ~ and we doing alright now.

browneyesmom was selling awareness stuff, anyone heard from her and how things are going?

Does anyone know anything about this -- considering the "Pure O" obsession-only OCD therapy and hoping for any advice. Or does USF deal with this kind of OCD? Thanks LA OCD center

from the West house- yes! It was exactly 1/4 mile, if I remember correctly the "short" way & maybe 1/2 or 2/3 mile the long way ( that is the Tropical Smoothie Cafe way!!)

Thanks- this is for an adolescent..

we stayed at the West house and we rarely saw anyone else- people keep to themselves, especially the BMT kids. They HAVE to! They have there own side of the house- we only saw them in the kitchen- which they have their own kitchen, anyway. most of the people who are there are busy with their own stuff and not sitting in the house all day- so I do not think you need to worry about it.

Does someone on the forum have experience with this? I really think I read about this here. I have a dear friend whose child, after suffering for a long time, was diagnosed with this. I am hoping someone here knows something about it.... Sorry to run off topic!

Will she do CBT/ ERP? Can you homeschool and take her to USF's program? From what you say- school is just tormenting her now. If I were you (easy to say, right?) I would pull her out, get in to intensive therapy and take it from there. We already homeschooled pre-PANDAS, and have been to USF (with great results) so take my advice with that in mind I have not read thoroughly this whole thread, but I wanted to add that by using K-12 you may be setting yourself up for more public school oversight than you are comfortable with. (maybe not, depending on your state, I suppose)Also, if academics are an issue, it may be difficult. I have several friends who use it and feel it is a lot of work.

Just another little of encouragement. I went through the same last minute stress and not knowing if/when it would happen.. due ot g'town scheduling, insurance, dr office each time my kids had pex. I swear- I nearly died from the back and forth anxiety it gave me. also, the devastation from thinking my kid would NEVER get better due to the incompetence and regulations of certain groups. I cannot even tell you the string of profanities and hateful thoughts that filled my mouth and mind those days. Pex & IVIG were mentioned as the treatment for my child and it was not until one YEAR and one MONTH later that she finally got her IVIG. Then pex was a few months later. I will also say that I have learned to not put to much stock in actual dates for procedures given by doctors and hospitals- that way I do not lose hope when it does not work out on the presupposed timeframe. I know the crunch you feel since insurance may be changing its policy soon. IV steroids may be an excellent thing to do now to bide time and maybe bring some healing, too! thinking of you.

man, I knew I should not have gotten off FB! thanks..

I see. maybe I will ask her about drawing them, considering all this hoopla about insurances not covering it anymore for pandas. thanks

how did you get her to check igg and iga? I have multiple kids who go there&she has not once checked ANY immunodeficiency labs.

you do not have to have lyme. but yes, most usually thought of as a coinfection. nobody would have tested unless he had sweats or something bizarre OR they were an LLMD. I read a medscape transcript about babesia and more oftenthan not it is NOT coinciding with CDC pos Lyme (whole 'nother discussion). Of course they were talking about the most common form of Babesia. My daughter had Babesia WA-1, a different type. She had sweats, fatigue, that kind of thing. What a confusing answer. sorry. I probably just killed a few more brain cells.