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I know you are frustrated but LOOK AT THAT LIST OF PRO'S!!!!! YAHOO! I think you are getting there. Time and time and more time is needed to heal. My daughter's docs say 1-2 years once consistent, appropriate tx begins. I, honestly, would start counting from pex for him. This is very encouraging, t.anna.

I think that person may have been referring to Dr K near Chicago. He treats PANDAS/PANS with IVIG, frequently.

One of our daughters first presented with the most bizarre fears. She was very suddenly afraid of windows. She became very difficult and had many tantrums. The only reason we considered pandas was because we had other daughters who had been affected with some more traditional OCD presentation. After antibiotics and steroids all the fears have remitted. honestly, your description sounds like a pretty open and shut case. I hope you can find help soon. If you post where you live you may be able to get more personalized assistance.

So happy to read this. What is different treatment wise?

How do you differentiate between normal and bartonella stretch marks?

Yes, this therapy sounds appropriate. I was referring to "talk therapy", which generally has an almost Freud-ian bent to it. The line of thinking is that OCD is generally an external sign of a "need to control" due to trauma or other issues. I know it sounds ridiculous to some that I am even mentioning this here, where we are know or are pretty sure our child's OCD is an organic dysfunction caused by infection. HOWEVER, you would be very suprised at the number of professionally trained family/child therapists who have zero understanding of OCD. They like to lump it in with kids who are bullied or overweight or from divorced homes. They see it as an emotional response , not a brain function. I have learned to extensively interview anyone who may be doing therapy with my children & be sure they understand OCD. It is as important or more so than being sure you have an A-Team medical team. Just beware these people are out there and they can definitely do more harm than good. A good CBT/ERP trained therapist (preferably a psychologist) can make a world of difference in your child getting the tools to deal with anxiety/OCD/tics. Have you seen the workbook, "what to do when your brain gets stuck?" or Tiger, Tiger is it true? Great books, every PANS parent should get them

Also, have you tried Dr L in MD (PANS neuro)?

Real quick- I absolutely believe that "talk" therapy can do harm, esp to a malleable kid with OCD. ERP for the ocd is good. A counselor talking about feelings,"issues", etc can unintentionally cause problems. Please make sure the therapist that you see is trained in ERP for OCD and not just someone who is a "therapist". I can attest to damage done by an untrained (in REAL OCD) professional.

Wasn't there positive TPO antibodies? Sorry, I was not implying a connection. I just was hoping someone who is familar with HE or AE will be following this closely!

Are they the ones who did the thyroid tests?

Who is going to be answering to you for these labs including TPO ? Ped/neuro? Just curious.

I can't explain the paper intelligently, but I can read it! All I can say is: I LOVE YOU, DR CUNNINGHAM!!! also: My daughter had high dopamine autoantibodies, so I am very interested.

a positive steroid response will confirm the autoimmune portion of the diagnosis, whatever it may be. Please let us know how he is as it goes. We never had any infection to go with exacerbations, IVIG did not seem to help nor abx. If IVIG did, it was 3 months later each time. steroids brought her back - not 100 % and not for ever, but they gave us a track record, her some breathing room and peace, and just as importantly, gave docs "proof" that she could get better and that her immune system was at play in her terrible psych symptoms.

t.anna, how are you treating? sorry to hijack the thread! so glad to read this!

In a way, the decision on Lyme vs pans route was made for us ~ and it was made by this disease itself. she suddenly refused all meds/ivs/ even picc line flushes in Feb 2010. She was done. totally, completely down with the dozens of meds and the IV. We had no choice. We also could not get to her leave her room, much less go to the LLMD. The doc ( I think) did not believe us that she would not willingly come in and sent us notes/ phone messages saying "child must come in". So my husband carried her, kicking and screaming, wearing depends into the office. The LLMD just stared and said" I think going the neuro (Dr L) is a good idea!" We got in to see Dr L in April of that year. We got the prescription for steroids, but could not get her to take them until around Memorial day. 6 weeks of staring at that bottle and not being able to get her to even try it. It was pivotal, and seemed like the end of the world at the time. I was convinced that this Lyme treatment would fix her and she only seemed to worsen. When she refused it all, I thought she would never recover. By her refusing Lyme tx, we had no choice but to "go the PANDAS route" and it was incredibly helpful. When my second daughter developed PANS, we did not even check for Lyme. maybe short-sighted, but I felt I could not "go there" again. She is fine now, and has been after pex/ivig and steroids in 2011 and 3 weeks at USF in 2012. She has been off all meds for over 9 months and has been nearly symptom free for close to a year. We also have a strong family history of autoimmune disease. I do not envy you being in the position of choosing what to test/treat for both your kids. It is so hard to know what to do. My husband and I have discussed this and if another child develops severe symptoms in my family, I will definitely go the PANS/autoimmune route first. If that is not helpful, I would then consider Lyme/integrative medicine.

I just wanted to offer hope tu4four. your post almost looks like I could have written it. we had the cutting clothes, cutting herself, scratching into every single kitchen cabinet with knives (large X on the front of each one), shaved her head (at the time she was a 13 year old with shoulder length hair!), holes in walls, doors kicked out (not just hers!), screaming in the street, chasing people naked with toilet plunger, running naked in the snow to run away-- terrible, terrible stuff.But now, she is 15 1/2, giggling, on her bed, looking at silly videos. She is wearing makeup, does her hair everyday, showers, kisses her sister, and is in school, making B's! She just had her 5-year "anniversary" of onset. 5 years of diving into and never think we were coming back. dark dark days. we also have/had other kids affected~ and they are all OK. one with tics, still, but that is it. We did lyme tx (major intergrative meds and IV abx) for over a year and it did not help. She had CDC positive Babesia WA-1 and Lyme. It may have triggered or exacerbated PANS, but it was not the problem to solve. steroids, pex, ivig, those brought her back, slowly. I would say that it has been a slow (and not always positive) road to recovery since May of this year. have you tried autoimmune-type treatments?

Both my girls took clomipramine when they were (one still is) symptomatic and it definitely helped at least one of them alot.

I am thinking it is not really necessarily indicative of infection. I am wondering if there is research somewhere on false positives, in the sense of hyper igm or other conditions, that may allow antibodies to circulate or not convert to igg. Thanks for your reply, dedee!

She was on "the combo" for PANS; zithro 500 qd and augmentin 1000 xr bid for a year. This was from her first positive in April 2012. Augmentin was actually probably from fall 2011.

There are many people from the northern Va area. (including me!) I am sorry you are having such trouble again, but it is great that he had such a positive response to IvIg the first go - round. Are you able to consider t & a?

well, maybe there is something to that Augmentin stuff, huh? I am a skeptic, but I wonder if it DOES work. We saw improvements not long after starting it this spring, after nearly 3 months of . Doseage was 1000mg Xr, but my child is bigger and older than yours, I think. Great, qannie. I sincerely hope things keep moving along and that the bad, wasted experience you have does not hold you back.

what changes have happened (medically) since the hospitalization?

Not at all. She has anti-phospholipid antibodies and RNP antibodies-- which some may see as a Lyme symptom, but we went through all that lyme stuff and she just got worse and worse. She does not have the diseases you ahve suffered with (except the psych stuff!) She is doing really well now, after getting multiple IVIg and Solumedrol IV's for the last few months and is also on cellcept, an immune suppressant. Considering your history, it seems pretty likely/logical that you may still have an autoimmune component to your presentation- maybe it just shifted from your esophagus to lungs to brain. how are you doing since you started the advil? did you keep it up? Can I ask how old you are?

anyone have any information on what could cause a false high IGM (on any pathogen, really, I guess)? My child is fine (no pans symptoms at all) now, but myco P was checked, to get a baseline . the IgM is very high- almost 5000! the IgG is also high. I am specifically looking for information regarding how other antibodies can masquerade as myco p. (if they do) or other disorders that may allow an IgM to be so high! These levels have been checked before, during an exacerbation & her levels were high, then, also, but no where near as high as this! Also, are the antibody levels quantitative? she is doing well now & has been for quite a while, so we are counting are blessings, but very curious now. I know that myco p has been associated with encephalitis, but she is not at that point now at all. She was, but pex, IVig and steroids returned her to us.

how is your daughter, Surfmom?