F.E.A.S.T's Around The Dinner Table forum

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A bit about who I am and where I come from.   My niece is 27, she got ill at 14. She would be listed as a success.  She has normal BMI.  She finished college. She is in grad school at Ivy League College.   But she is not well.  She binges on alcohol. She has dabbled with more potent drugs  She eats strangely.  Her relationships do not last.  She is very sad and often lonely.  She is lost.  I  have researched and read all I can in current and old literature, volunteered in ED clinic, and drew upon all my learning and scholarship from biochem major and medical school.   It may be a shot in the dark, but I concluded what makes sense is a ketogenic diet---very related to Atkins diet.  It keeps people ketotic (starving also keeps people ketotic) so they feel at ease and unanxious, and yet it gives them calories--lots of calories in form of fatty foods.  The KG diet has a history. It is Atkins like diet, but while it helps obese lose weight, it helps thin people gain weight--it is a regulator rather than a plus/minus.  It has a long and hopeful history of very good effectiveness for seizure disorders.   Yes, it absolutely helps seizure disorders----see Charlie Foundation for details.    So why has it not been tried for anorexia nervosa?   Because it is considered antithetical to current treatment (no "good foods;  no bad foods)    because patients will not eat a high lipid diet (they will not eat anything so this does not hold much force for me)    because there is no funding (yes here is the rub;  there is no drug company to make money,  it is used in most hospitals in the seizure disorder unit but no drug company makes money)   because it is dangerous (lets face it zyprexa is known to cause arrythmias, and no one is alarmed that it is dangerous).     This is my strong belief,   a KG diet could help my niece.  It could help others.   I am so frustrated by years of  going through the "proper channels"  and getting no where.    Obviously it would need a clinical trial, a careful monitoring, probable inpatient treatment and observation, but for pete's sake why wont' someone give this a try?    The best i got was from a respected AN MD who said " yes, i think it would be very effective.  i even had one patient try it on her own, and she was able to free herself from anxiety, engage in treatment is well now for 5 years, but when she feels the anxieties, the urge to restrict arise, she immediately goes back to KG diet and it quiets"   So I said, why not do a clinical trial??? No money was the answer    Too out of the box.       Thanks. if you read this until the end.  Sad Aunt
Interesting thoughts. I have done a little research and there are clearly some risks for those using ketogenic diets long term. This page sums it up nicely. I have found a number of pages other papers which seem to vary about the lipid outcomes in those on ketogenic diets, though it would seem that the research which applies to normal weight individuals, such as those with epilepsy would be more applicable to those with eating disorders, and these show a rise in lipids overall. To me the long term risks may well be an issue, though they may be a lot less of an issue than repeated cycling in and out of treatment for eating disorders.
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
I guess there are people who believe anorexia is curable, but I think the more chronic it becomes, the worse the outcomes/treatments. You have obviously lived, researchers and sought many treat,mets for your d, she is lucky to have you. I don't know what you have tried but my opinion is that yes, there are psychiatric and medical illnesses that have no cure for some for a number of reasons and once all options are exhausted, then palliative/ alternative options are appropriate ( I am not sure which you are referring to) but if she is refractory to all treatments and some unconventional treatment gives her a quality of life, I am all for it for alternative treatments. But when playing around with increasing calories and electrolytes I would recommend having a dr doing frequent bloods. Also do you feel capable of feeding high fat foods.

I have no idea about its use and history but as long as it does no harm - there comes a point where you gave nothing to lose - just look at people desperately trying to get accepted onto medical trials but I emphasise these are medicallly supervised.
I want a realistic dr and team, not someone who says what I want to hear and not a 'touchy feely nice' dr that doesn't have success.