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PANDAS and Anorexia


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I friend just told me this morning that she knows a child who is being hospitalized for severe anorexia. It is a life threatening situation. I do not know whether the child has any other symptoms, but my friend is debating whether she should bring up the possibility that this could be pandas. For those of you who have experienced pandas anorexia, how did you figure out that it was connected to pandas? What caused you to look into infectious triggers?

 

Can anyone forward me studies that mention anorexia as a pandas symptom?

 

Thanks so much.

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I friend just told me this morning that she knows a child who is being hospitalized for severe anorexia. It is a life threatening situation. I do not know whether the child has any other symptoms, but my friend is debating whether she should bring up the possibility that this could be pandas. For those of you who have experienced pandas anorexia, how did you figure out that it was connected to pandas? What caused you to look into infectious triggers?

 

Can anyone forward me studies that mention anorexia as a pandas symptom?

 

Thanks so much.

 

Young--pre-puberty. Boy. Very suspicious. Start with a fear of choking? Sudden? Just what I have read. Dawn

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I friend just told me this morning that she knows a child who is being hospitalized for severe anorexia. It is a life threatening situation. I do not know whether the child has any other symptoms, but my friend is debating whether she should bring up the possibility that this could be pandas. For those of you who have experienced pandas anorexia, how did you figure out that it was connected to pandas? What caused you to look into infectious triggers?

 

Can anyone forward me studies that mention anorexia as a pandas symptom?

 

Thanks so much.

 

For us it was age (7.5 years) and there were so many other symptoms (anxiety, rages, ODD). She was so young that nobody who normally treated AN wanted to touch her. We called about 20 doctors and 1 child psychiatrist suggested checking her for strep. Then we google Strep and Anorexia and learned of PANDAS.

 

When we hospitalized her (ED clinic/acute food refusal) we insisted on a throat culture and she was positive (her strep titers were low). She also had vaginal strep. Her younger sister also (assymptomatic) was positive on a rapid.

 

Hopefully, the Cunningham test will be available soon. I would also treat her like any other pandas suspect...culture and titer, testing for Strep/mycoplasma...other infetions.

 

The PANS paper mentions anorexia as a major criteria.

 

Unfortunately, Mae Sokol who did the PANDAS/AN research passed away from cancer. Here's a paper from Dr. Sokol:

 

http://online.liebertpub.com/doi/abs/10.1089/cap.2000.10.133

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I friend just told me this morning that she knows a child who is being hospitalized for severe anorexia. It is a life threatening situation. I do not know whether the child has any other symptoms, but my friend is debating whether she should bring up the possibility that this could be pandas. For those of you who have experienced pandas anorexia, how did you figure out that it was connected to pandas? What caused you to look into infectious triggers?

 

Can anyone forward me studies that mention anorexia as a pandas symptom?

 

Thanks so much.

 

For us it was age (7.5 years) and there were so many other symptoms (anxiety, rages, ODD). She was so young that nobody who normally treated AN wanted to touch her. We called about 20 doctors and 1 child psychiatrist suggested checking her for strep. Then we google Strep and Anorexia and learned of PANDAS.

 

When we hospitalized her (ED clinic/acute food refusal) we insisted on a throat culture and she was positive (her strep titers were low). She also had vaginal strep. Her younger sister also (assymptomatic) was positive on a rapid.

 

Hopefully, the Cunningham test will be available soon. I would also treat her like any other pandas suspect...culture and titer, testing for Strep/mycoplasma...other infetions.

 

The PANS paper mentions anorexia as a major criteria.

 

Unfortunately, Mae Sokol who did the PANDAS/AN research passed away from cancer. Here's a paper from Dr. Sokol:

 

http://online.liebertpub.com/doi/abs/10.1089/cap.2000.10.133

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My son has anorexia with PANDAS. We are getting ready to try plasmapheresis. He has had most PANDAS symptoms at one time or another. the food issies started at around 9 with eating only healthy foods and now at 16 he is involuntarily vomiting most of what he eats and drinks. He has suffered bulimia and anorexia in the past.

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I friend just told me this morning that she knows a child who is being hospitalized for severe anorexia. It is a life threatening situation. I do not know whether the child has any other symptoms, but my friend is debating whether she should bring up the possibility that this could be pandas. For those of you who have experienced pandas anorexia, how did you figure out that it was connected to pandas? What caused you to look into infectious triggers?

 

Can anyone forward me studies that mention anorexia as a pandas symptom?

 

Thanks so much.

 

I just posted this on another thread:

 

I typed out a slide from a Swedo presentation (IOCDF San Diego):

 

PANDAS/PANS Eating Disorders

-classic anorexia is rare, but does occur

-more commonly restricted eating is secondary to OCD symptoms. Once weight loss exceeds 10-15% of body weight, body dysmorphia may develop

-Obessional fears linked to eating restrictions:

*Contamination fears - poison, fats, excess calories

*Fear of choking, vomiting, others

*Guilt/scruplosity - "don't deserve to eat"

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Our d has gone through the anorexia/PANS, twice now.

 

The sudden onset first hit when she was 9, as in "one day she woke up an anorexic(!)" no joke-- She lost 10 lbs in the first 14 days, and the obsessive thoughts re: being too fat, need to compulsively exercise, etc...were night and day. Weeping about being fat, etc. (which she was not.)

 

With the first dramatic episode it was the first time she had any OCD issues...so we thought it was anorexia, pure and simple.

 

The confounding fact that anorexia is very rare in children as young as 9 helped tip us off to the possibility. Mae Sokol noted that the EARLY onset, as well as sudden-out of the blue onset, may indicate PANS.

 

The second episode was this year, and in the winter we had pex. I would suggest to anyone dealing with this that they consider getting their child "re-nourished" to a stable state, whether it be by hospitalization, gastro tube, whatever is necessary and THEN do pex if they are thinking of it. A nutritionist told us she would choose to IVIG if given the choice between IVIG and pex, and in our case we are convinced our d's less than best response to pex was due to her brain not being in a stable state. --for what it might be worth, that has been our experience.

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Debbie1--I want to add one more thought-- and that is that IF it is an infection-triggered PANDAS reaction which has anorexia as a symptom, it is still anorexia.

 

With this horrible episode this winter my daughter had severe food restriction, lost a lot of weight, and was over wrought with obsessively counting calories and restricting. She became so malnourished that we were one step away from the gastro tube in the hospital. We have worked (both times) with teams of doctors specializing in anorexia, a psych. and nutritionist, to get her stable again. It is still anorexia, just with the unpredictabel trigger of reaction to an infection (PANS.)

 

This has been, by far, the most frightening thing we have seen, because the severity has been extreme.

 

To anyone seeing ANY food restriction issues with a PANS / PANDAS child, I cannot say it strongly enough that one must be mindful that anorexia is life threatening and can get very "bad" very fast.

 

Nip it in the bud, if you can, with skilled anorexia doctors using the Maudsley method. This works!

 

It is a method which emphasizes the physical reality that the person who is mal-nourished does not think straight.

 

Their brain is affected to the point that they do not (CANNOT) see reality clearly--and the emphasis is that physically the issue must be to get the brain functioning in a rational manner again by re-nourishing the brain to a normal state. This absolutely works.

Edited by T.Mom
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Thanks T. Mom - I appreciate the additional advice. Just 1 question - if the infectious trigger/autoimmune process is never identified and treated, will the child be able to recover from the anorexia with anorexia treatments alone?

 

IMHO no. Our dd (at age 7) got renourished in the hospital, also started abs... But she wasn't stable (still had OCD, lots of eating issues) and we almost had to re-hosp until we cleared her sister of strep and also "discovered" Azithromycin/ Advil.

 

So, you really need to do both, unless you are lucky the PANDAS OCD morphs to another non food obsession.

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Thanks T. Mom - I appreciate the additional advice. Just 1 question - if the infectious trigger/autoimmune process is never identified and treated, will the child be able to recover from the anorexia with anorexia treatments alone?

 

 

 

Debbie1-- I don't know. I have to agree with EAMom, that the real issue of autoimmune process will still cause symptoms, at some time and next time they may be different.

 

In our daughter's case she was treated with the very first PANS episode (which was anorexia only) with only anorexia treatments--because we did not know better...the food compulsions went to very low level for then about 5 months and then she exploded with sudden onset OCD. (ticcing, OCD-ing, tap-tapping, eyes held shut, etc. etc. stopped speaking for 4 weeks, etc.) We thought she had a brain tumor, it was sudden and extreme (regression, urinary issues)

 

Yes, I think the underlying issues will remain -- if it is PANS anorexia -- and yes, without the PANS treatment, it will come back, and may come back again even if treated. --BUT at least with IVIG or pex there is a re-stabilizing, a "re-booting" of the immune system which may be enough to stop the cycle.

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