Need articles on PANDAS & Anorexia

[Dedee]

I think I remember reading in an article somewhere that anorexia induced by PANDAS causes the kids to have a different perception than other children suffering from "Non-PANDAS" anorexia. Is this true or is it just that some children with PANDAS have contamination issues and loose weight because they won't eat? Does anyone have experience with this? I need articles for a professional friend of mine who works with teens and wants to make sure she understands the differences. I always send her articles on PANDAS and we were talking about eating disorders recently and I talked about how much I worry about my daughter who is recent PANDAS because she occasionally makes comments about her body. My dd is only seven so of course this completely freaks me out. Anyway, she wanted to read any articles on the PANDAS symptoms and all I could find were the ones on biochemical changes which I'm don't think is what she needed. So if anyone has any information, it would be greatly appreciated. Thanks so much!

 

Dedee

[EAMom]

Hi Deedee,

 

here is an older article by Mae Sokol (who has sadly, passed away from cancer):

http://www.bulimia.com/client/client_pages/EDR/EDR12-5.pdf That article also references some other publications.

 

A case study:

www.jaacap.com/article/S0890-8567(09)62622-8/abstract

 

 

Another blurb:

http://health.dir.groups.yahoo.com/group/immunologysupport/message/45061

 

Something from 1997:

http://www.pslgroup.com/dg/34ea6.htm

 

You might also be interested in this thread on distorted body image/OCD

http://www.latitudes.org/forums/index.php?showtopic=11839

 

Some kids that get anorexia from PANDAS do have a fear of choking or contamination, whereas others (as my dd did at 7 years of age) have distorted body image, more typical of "traditional anorexia". However, my dd also had tics, tantrums, emotional lability, depression, other symptoms that perhaps where not so typical of non-PANDAS AN.

 

I was also trying to pull up some old threads from Mom2PANDAS...I think she was the one who was hosp. with Anorexia as a teen...but internet explorer won't let me!

Edited January 25, 2011 by EAMom

[Phasmid]

The investigator who was doing most of the work in this area passed away, sadly, in 2007, taking much of her understanding and knowledge with her. That was M.S. Sokol. She was looking at the B cell marker, D8/17, a marker that pointed to a genetic predisposition for rheumatic fever. There are many papers published by her on PANDAS/infection triggered anorexia. Most are accessed only through subscription via Pubmed, but I have a paper or two downloaded that I will try to attach (the link) if I can figure it out. If you search Pubmed for Sokol, MS, you will see her papers on anorexia, infection triggered anorexia, and PANDAS anorexia.

 

My son is in the later stage of PANDAS (he's 12, been ill since 2003) and has recently developed the distored body image that precedes the actual anorexia stage. It is a horrible OCD. The FANTASTIC news is that exactly two weeks after his first IVIG (low dose), like a switch had been flipped, this has miraculously disappeared! It began very strong in early November, worsened over the months, peaked in early January, and it just disappeared last weekend!

[Megs_Mom]

The investigator who was doing most of the work in this area passed away, sadly, in 2007, taking much of her understanding and knowledge with her. That was M.S. Sokol. She was looking at the B cell marker, D8/17, a marker that pointed to a genetic predisposition for rheumatic fever. There are many papers published by her on PANDAS/infection triggered anorexia. Most are accessed only through subscription via Pubmed, but I have a paper or two downloaded that I will try to attach (the link) if I can figure it out. If you search Pubmed for Sokol, MS, you will see her papers on anorexia, infection triggered anorexia, and PANDAS anorexia.

 

My son is in the later stage of PANDAS (he's 12, been ill since 2003) and has recently developed the distored body image that precedes the actual anorexia stage. It is a horrible OCD. The FANTASTIC news is that exactly two weeks after his first IVIG (low dose), like a switch had been flipped, this has miraculously disappeared! It began very strong in early November, worsened over the months, peaked in early January, and it just disappeared last weekend!

 

Hi Phasmid - have been thinking of you and hoping things would go well. I am SO grateful that you have posted an update. I worry about this for the teen years, as we already had food issues and found that to be the most frightening part. So glad he is doing well.

[Dedee]

Thank you all for the references. I tried to pull up some of the pub meds but could only get the abstract. I am also terrified for my daughter and she is only seven. I will pass on the articles that I can. Thanks so much!

 

Dedee

[butterflymom]

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Edited February 3, 2016 by tampicc