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I would advise you to get to a PANDAS doc right away! Do you have one in mind or do you need direction on that? Oh & I think the song was really appropriate for the stuff we all go through on a daily basis dealing with kids with PANDAS! It is great you have a teacher on your side. I hope she will be a good advocate for your son. It sounds like she might be

I am trying to find out about Cumberland Hospital for Children and Adolescents in Southeastern Virginia, specifically. Is there some website where patients post reviews about facilities? Does anyone know about this place?

So how do you find a DAN doc?

So how do we find a good DAN doctor? I also roll my eyes at yeast-ers. Lovingly so, though, of course! But I am listening to you JAG10. You have been a voice of reason many times before:)

My son had the same blistering to his skin with even minor sun exposure on doxycycline! Also, it did not help too much. A switch to Bactrim, Ziana gel and Sumadan face wash has been an excellent combination for him. The dermatologist was practically begging me to put him on Accutane, as his acne was horrible. Within 8 weeks or so, the acne was so much better. We are now about 5 months since this combo and his skin is almost clear (besides the healing of old scars). If the doxy does not cut it-- move to something else. We wasted an entire summer on doxy.

Well, the one who developed the anemia post IVIG is doing pretty well- so i hope I never need to revisit the issue! The hem/onc and blood bank director came up with a plan, though, should we ever need it. They would infuse it very slowly and for about 15-30 mins and wait a few hours. Monitor her urine for RBCs and her clinical appearance. They would run it slowly to finish- probably overnight. I am not sure how comfortable I am with that and if she needs something again, I would request pex. She had that also and it was very helpful. The other daughter has received 2 IVIG about 7 months apart. She will be getting more soon, as they are helpful (or perhaps the concurrent IV steroids are doing the trick!). Or perhaps, the IV steroids are preventing an autoimmune reaction from her??? Thank you for pointing me directly to the reference in the paper. I think I have it now! So maybe my personal experience with strep "molecular mimicry" (many, many strep infections as a kid, resulting in tonsillectomy at age 9) is APS? Also, this tetanoid toxin discussion reminded of something I had forgotten. Another daughter of mine (not PANDAS!!!) actually had a significant reaction to her DTAP around age 5 or so. She developed very large circles on her leg, not lacing, but large red and purple circles. Our doctor's office actually ended up reporting it to the CDC vaccine reaction program (or whatever it is). I should ask to review the copy. Her allergist said he would like to allergy test her before she gets another tetanus shot. I do NOT think it was a allergic reaction. Some much to think about. I need to get my highlighters and print these articles out! Thanks to both you and LLM for bringing this to our attention! My girls are 12 & 13, though I have younger ones still in the vaccination age (though with PANDAS overtaking my life, we do not get to many well visit. DARN)

I am going to read this all much more clearly in the next few days. My other daughter actually developed livedo reticularis (severely) during her IVIG infusion- which the hem/onc doc was stumped at! I knew it was a sign of something... and then a few days after her IVIG she developed her blood began to hemolyze and she developed hemolytic anemia. she was sick for weeks, but recovered. The daughter who was tested negative for APL and ACL antibodies is NOT the one who developed the hemolysis. She is the sicker one (also had lyme & babesia) and does complain of muffled hearing, but it could easily be her concentration, as she has none! I did not know of a correlation. But back to this adjuvant topic---- So, basically the "additive" to vaccines are used to induce autoimmunity in the lab? HMM-- that is food for thought. I have little ones still needing vaccines and I think the immune system in my family is already toast (multiple serious autoimmune diseases and at least 3 PANDAS kids ) Great, I may have to find a new doc. I love mine, but he is pretty serious on the vaccine issue. Stalling is a good tactic Why can't things be simple??

Buster, Can I keep you on retainer? You are so smart. I do not need an lab deciphering today... but I love when you post! It makes this PANS mud run clear.

Thanks for posting these articles. I have Antiphospolipid antibodies and am treated for it. My pandas daughter was checked pre-pandas for another reason and was negative. I wonder if that is still the case? Nice to read more examples of molecular mimicry!

How did you get to this good place? I cannot remember your story. Thanks. If we ever get to a good place, we are going back to our integrative doctor to get "repaired"

My fam doc has "fired" pts who refuse vaccinations.i am sure i can get by with no gardasil and we do not do chicken pox shot. If I refused much more, I might be put out. There are.no vax docs but you will need.to search long and hard for them depending where you live.

DebC- your video is great! I almost teared up at your daughter:) I sent you a PM!

I just watched it and Dr T's last 30 secs (the treatment talk) was cut off for me... I smell conspiracy... I am TOTALLY kidding on the conspiracy part.. but I wish I could hear what he said.

There is a really interesting book (read it in all your free time, T.mom:) "Encephlitis Lethargica" by Joel Vilensky It goes in to detail about all the potential causes and subtypes of EL. I do not think an exact cause was ever "figured out"-- though many sufferers had a preceding febrile or flu-like illness. Sounds familiar, doesn't it? He has a bit about PANDAS and research by Dr Dale ( he an Australian, I think) about the two disorders. I think PANDAS, EL, Tourette's, the Leroy Girls: all different arms of the same octupus! So, what to do with this information....... makes more conversation (and at least a little novelty discussion) at our next PANDAS appt. There is a KLS study center at Stanford. Maybe I will email them.

In checking out pandasnetwork this morning, I saw this case study PANDAS and KLS After reading more about this syndrome, I KNOW my daughter had this. She had 2 periods of many weeks (over a month or nearly 2) where she had all the related symptoms (minus the hypersexuality- thank goodness:) These periods were a year apart and the first episode was about 18 months post PANDAS onset. Another PANDAS parent/activist who helped me get into a PANDAS doc a few years ago knew my daughter's symptoms mentioned to me about encephalitis lethargica (which has again become an interest of mine, thanks to another PANDAS parent:) Only one of my PANDAS daughters exhibited the KLS symptoms, and she of course, is the one who is not recovering as well or as quickly with top-of-the-line PANDAS tx. Our PANDAS doc knows of her hypersomnia, but other symptoms have since take precedence and it is not an issue currently. She would sleep in excess of 20 hours a day and wake only to eat and go to the bathroom (and sometimes not even for that) I am curious if anyone else has seen this in their child?

Hi Nmom, my child had Babesia WA-1 and was treated before we went down the typical PANDAS treatment course. She had many (maybe all) of the physical symptoms mentioned by RNmom. It was found after we went to an integrative LLMD - we went there trying to find a cause for her overnight onset psych symptoms & the physical issues. She also had a marginally positive lyme test at that time, but once the Babesia was under control (Mepron, many supplements, antibiotics) her lyme test was clearly CDC positive (and this was using LabCorp or Quest). I know we have spoken before, maybe you remember? There are a few LLMDS in the NoVA or Wash metro area who are well known. We saw a great one in NoVa. She took great care of my child. I will tell you that our experience is that it was a huge commitment financially, time-wise and even emotionally (not counting that your child needs to be extremely cooperative with many medications/supplements). One thing I would consider if it was me and say, on my other PANDAS child, who was "dealing" with the OCD and tics as you describe and I got a vague positive like "antibody detected" but no quantitative numbers~ I might research the test and take it to my family doctor or even Dr B, though your local doctor would be alot closer! I would ask them to run it again and ask for a more definitive test. I know this is practically heresy to say this publicly- but I can take the backlash -- but I would NOT pursue that Lyme band, if your kid is not physically sick or incapacitated. SORRY- but I would not. How did your positive Lyme test look last fall? What bands were positive? I think that would be helpful to compare. I think band 66 is like band 41- common in different kind of bacteria- not specific to Lyme. The ASO reflex just has to do with how the lab performs the test- meaning if it is positive, keep testing. When you say his C1q is out of range- high or low? I think that being low (or even undetectable) can be acquired or from birth. I cannot imagine how frustrated you must be-- dealing with lab results that seem incomplete from halfway (or maybe almost all the way!) across the country. Though I just said I would not pursue that single postive lyme band, I would try to have the Babesia rechecked before I hit an LLMD. However, the integrative approach of an LLMD can find so much more, like LLM said. They really work hard to get your body in tip-top shape. I think when this PANDAS nightmare is over for my child-- we will head back there to try to undo all the damage done by years of psych meds, steroids, and get her immune and detox systems in good shape.

My child is on rilutek and has been since Nov, I think. She is on 50mg BID. Hard to ascertain the sucess of this- as she started it about one month post pex, but I do think it is helpful. She tried it once before for about a week (over a year ago) before any IVIG or pex and I think it was helpful- I could not give you a percentage, as she only took it for a few days and then she refused meds (all meds, not just rilutek!) but I think it was showing promise. I think some people have trouble: 1. getting a doc to prescribe it (our psychiatrist did- after she knew that my child had it before- I had originally talked to Dr Grant at NIMH about the Rilutek trial and then begged my PANDAS doc to try it) 2. I think at least one person here was unable to get their insurance to cover it.

We tried a short, low-dose trial of medrol ( at the direction of our LLMD) we saw no appreciable benefit. My child "crashed" symptom-wise shortly thereafter to the deepest, darkest depths of this disease. I never considered until now the timing.... However, 3 months later- after getting to a PANDAS doc and trying high-dose (60mg) steroids- by 10 days my child was a different girl. It was really amazing. We did a month starting at 60 tapering down after 10 days. I know it is scary, but at such a small dose previously, perhaps Dr B is correct- maybe it was not enough to cause the effect we desire. I do wonder (and do not take this personally, please) is there some sort of dividing line between an auto-immune or inflammatory PANS and not-PANS - that can be deciphered by a response to steroids? I thought these were used as both a diagnostic and therapeutic tool. And again, this is not directed to you, bigmighty-- but is there a point at which non-responders go another route and say- hey this whole PANDAS bit is not cutting it here? I really sincerely hope you are able to try it. It has been so miraculous for 3 of my kids multiple times each. Is your child on abx?

what is neuroscience testing?

nmda enceph is frequently,but not always, aused by a tumor. i think these girls would be "sicker". i am really happy that it sounds like they are getting a second opinion:)

For our clear PANDAS (strep) child- 1 & 2. she is on 250 mg Zithro daily and has been for over a year, easily. She also did a month of clindamycin followed by 2 weeks of rifampin (though admittedly, she was not very compliant- clinda was TID and that is difficult to maintain!) 3. she is almost 13 and weighs about 120lbs 4. she had 2 MAJOR (with capital letters!) strep-associated exacerbations- smaller exacerbations not related to anything 5. I hate to say it (cross your fingers) she is about 90% or more better- this is one year post pex and 8 months post IVIG- it has been sawtooth, but we are at a really good place and have been for about 4 months or more. How is your girl? Hope things are OK!

Thanks for letting me know I am not alone. I am really tired of it and it is HORRIBLE, HORRIBLE, HORRIBLE for the other kids. She has younger siblings to hear her speak (yell) at us and them sometimes this way is very destructive to everyone. Actually, this is one of the symptoms that is starting to put me over edge. YIKES. Let me know about the urine test, S&S.

I agree on the MRSA with phillypa. I am also a hospital worker and we all joke that we will NEVER let our nares be swabbed-- lest we end up in isolation!

NO ideas on treating, only commiseration. My daughter does this extensively-- same wording as yours I really believe they cannot control this. It has gotten better- after pex and IVIG and lots of medicines, but it is still there. It is almost a reflex- she is spoken to and she responds with "shut up! go away!I hate you!" I hope someone has some ideas!

I watched this and at 1:37 secs the volume goes out!!! what does the dad say after the second opinion comment? I am so curious. can anyone hear it?