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Would you consider trying to get her seen at Duke's neuroimmunology clinic? ODD, raging, anorexia Please consider it.

Sss, How long did you continue the PharmaNac? That is really interesting. Did the symptoms recur when you stopped it? Neat way to deliver it, also. Beerae22, Do you thinkyou could get her to try something like that? It's not really food maybe she would drink a fizzy drink.

Have you considered Duke hospital or contacting the Autoimmume Encephalitis alliance for help? Does she have other symptoms besides just the anorexia?

Aealliance. Org My daughter had rituximab last month. I am so glad you have gotten this arranged. Our daughters' were treated at georgetown, but we did not get this far then. Now, Duke provides excellent , thorough and successful care. My older daughter is 16- sick since 2008. Dont lose hope. She was incredibly severe. (Psychosis & more) Tonight she is at a dance with friends and goes to school! Autoimmune tx has been a miracle for her. She also has spiraled every spring since onset. If you want to talk more, feel free to pm me. Sounds like our kids are similar. I am in Virginia.

Did she have the two weeks apart or a few months? Mine had dose one and then ivig one week later, then dose two one week after that. Hopefully that will be it! Oh and thanks:)

Surfermom, This treatment describes my daughter. She just had her first rituximab cycle last month. Did your child repeat a course of rituximab? Mine is doing excellent now, after many consistent, successive treatments. Rachel, I am so excited to read these posts about tx. I think you are moving in the right direction. Best wishes!

My daughter's positive ANA was one step that led her to the right treatment. My daughter's was positive with a speckled pattern. Try not to be scared. Look at this from a treasure hunt point of view-each finding is a step to get your child to proper diagnosis and healing! It is good to find all this out. I believe there is a low IgA appropriate ivig.

cjsmom, What tx is your son getting, may I ask? I am sorry he is not much better. My daughter was in the same place symptom wise and now at 16 and 5 1/2 years post onset - after pex 2x, lots of ivig, steroids , cellcept, other meds and rituximab , she is doing so much better. The appropriate (PANS/AE) tx did not start until 2011, really and did not get consistent and aggressive until 2013. So it has taken a long, long time. Her doctors say 18-24 months for major improvement once tx starts. She is not treated at Stanford (we are on the opposite coast). Hang in there.

I get the article when I click it, even from a different computer, I am able to read the article. The video is part of it, though. Sorry you can't read it. Dr Frankovich is the rheumatologist mentioned.

http://www.mercurynews.com/health/ci_25600426/misdiagnosed-bipolar-one-girls-struggle-through-psych-wards

To expect a kid with ocd/pans to have impulse control can be too much. No one asked, but my kids got better without going gluten free. Dont beat yourself up. You have enough to worry about. Bloating can be a million things. Hope you figure it out. Of course he "wants" to get better. If only it was that easy.

Most people with functional immune systems will have an elevated aso when they get strep. Healthy and PANS. It should go down over time, with or without abx.

Pandasphilly, Does your son have a diagnosis besides pans/pandas? I mean, has other testing found anything? I am curious, given his severity. How old is he?

One of my daughters developed hemolytic anemia post ivig. Vasculitis (or similar) developed. It was much sooner after ivig (like a week). It was monitored very closely by hem/onc and she was fine by 6 weeks or so later . She had type A blood, which apparently is more lively to develop this complication to ivig. Just something to consider.

MPatti, I need to contact you about the support group.I've had a lot going on, pans-wise. Several out of state trips for tx.. But I just read your post about blood clotting disorder. I have one also and it affects pregnancy. The reason I'm writing you is because my daughter was also found to have it and they feel it's the cause of her pans symptoms. If you have anti phospholipid syndrome, it is known to cause psychiatric problems in some cases. could this be the cause of symptoms for your child? Sorry to post off topic. I am sorry you are struggling. Maybe just knowing you are not alone will help.

I was thinking lupus. Funny how we all have our lenses:)

Thanks, rowing mom.

Where did red or lindamw state that abx protocols are useless?

Just curious, will this be the first ivig for your child?

Excellent post, qannie. What I find so particularly sad, is the fact that they went to Boston for medical (flu?) care, right? Not even for psych care. Imagine the dangers our children are in, if they are placed in this situation.

pandasphilly- would you mind if I reach out to you this weekend about the program. I would understand if not a good time. We are possibly considering an in-patient stay here.My daughter was at Rogers for several months in 2012. I would be happy to share privately, if you like.

http://c.o0bg.com/rw/Boston/2011-2020/2014/03/25/BostonGlobe.com/HealthScience/Graphics/SCAN.pdf This may help explain some of the punting back and forth between CT and MA and why the court (though sadly, in my opinion) did what it did. it also reminds me why we worked our tail off to keep our daughter out of any hospital and why it is important to maintain your cool in the face of incompetent or ignorant "professionals".

Rothman was excellent and yes 3 weeks of intensive was very helpful. But our problem was ocd with no major eating issues involved at the time. Have you contacted. T.mom or michelew on the forum? Both have extensive experience in anorexia. Have you tried steroids or ivig for this disease? Autoimmune testing (ana, esr, antibodies)? The brief foray we had into anorexia came after pex (months later ) & ivig helped slowly, along with zithro500 mg daily and augmentin 1000mg twice daily (she was 12/13- 120lbs or so). Are there any other psych/neuro isssues? Have you seen this video: Aealliance. Org Go to clinical tab at top and then watch grand round video. Sorry I cannot post link now (on my phone) Sorry for all the questions, just trying to point you in a direction that helped my kids, including one with a brief, sudden anorexic period.

I am.

A few years ago, several ladies (and a few huisbands) met up at Fair Oaks Mall, Potomac Mills or elsewhere. There were moms from around the beltway, out in western NoVA, and the fredericksburg area. we live out past prince william county, but I am from ffx (centreville, actually maybe some folks want to meet again? anyone?