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Plum99

Can someone fill me in on Stanford?

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When my child was diagnosed with PANDAS 4 1/2 years ago, Standford seemed to be one of the only institutions that was studying it in a pretty big way. I would have to assume that they could be several steps ahead of many with understanding this convoluted disorder and treating it. Best of luck!

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We are not members, but know a number of families who are (and are very grateful that they are).

 

Stanford's is a multispecialty PANS clinic, so if your kid gets in, they would/could get seen on the same day by multiple specialists, including a PANS-knowledgeable and wonderful child psychiatrist. In addition to MDs, they have social workers to help the family cope better with a child or more with PANS flares, and a school specialist to help educate the school to better understand and accommodate the child. In addition they test children with EEGs for sleep issues (apparently quite common) and MRI (which is usually normal, but if not, will support getting IVIG reimbursed), and follow kids with tests for strep, the Cunningham panel, etc. They do have dedicated reimbursement specialists and a better record of getting IVIG coverage.

 

The key negatives that I've heard (may not be most current info) is that

  • they may have a maximum IVIG dose, so a large child may not get the full 1.5-2g/kg
  • they don't test for Lyme & co-infections or treat those. Not that they don't believe mycoplasma, H1N1, Lyme etc, can trigger PANS, but that's not their area of expertise. I don't know how they feel about co-treating with an LLMD.

They are swamped with applications, and ONLY take those kids that match the eligibility criteria for their current research studies. The families that are in seem very, very happy that they got in, feel supported and well cared for. Many of the recent-onset kids do get well with just antibiotics +/- steroids, but the Stanford ER is also PANS aware, and the PANS clinic can also arrange for IVIG/PEX very rapidly in case of extreme severity (e.g., sudden eating restriction with weight loss, psychosis, suicidality, ...) . And if a child doesn't continue to improve despite IVIG, they have quite a bit of experience with more advanced immune suppressors like rituximab or cellcept.

Edited by wisdom_seeker

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(sorry- I messed up the quote).

Plum99: "That part I couldn't imagine anyone fighting to be involved with."

 

What part?

 

And yes, I agree that it's the type of comprehensive PANS treatment center that all our kids deserve. I wish that my son had been considered eligible, but he did too good a job hiding his OCD (he thought we'd consider him crazy). And maybe he was too old, ... and we weren't sure if the symptoms began in Jan or in Aug 2015.

 

It was a huge disappointment when we didn't get in despite the neurologist's and psychiatrist's recommendation.

 

I think they avoid giving out their eligibility criteria to prevent families from gaming the system. Can't say I blame them. You can invalidate an otherwise excellent research trial by having too varied a population.

 

But I still wish they also had an open treatment clinic, not just the research clinic.

Edited by wisdom_seeker

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Our daughter is currently a patient at Stanford. She has been in a massive flare for the past 16 months. She has been on long term antibiotics, she has had 2 steroid bursts and finally a round of IVIG. None of these things were really working and she lost over 10% of her body weight due to food refusal. She was also extremely oppositional and began having psychotic episodes, during one of which she tried jumping out of out care while driving 45 mph. After so much weight loss and a downward trajectory, Stanford admitted her into the ICU, gave her an infusion of Rituximab, 3 plasma exchanges, followed by another round of Ritux 2 weeks later. She is still not eating and had to be placed into an eating disorder facility, where she still is. We do have hope though. She has interacted with us in a way that we have not seen for ages. She is engaging in conversation. She is still refusing to eat, but has a feeding tube, and the weight is coming back on. We know that the Ritux can take 1-6 months to take effect and we are hoping that we are seeing the beginning of improvement. I sure would love to talk to other parents who have had a similar course...

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