Eating disorders and D

[Kaylas mom]

I just want to know if anyone else has dealt with an eating disorder and also D. If I look it up online all I get are references to skipping insulin, eating and running high. We are dealing with no eating, little insulin because of no eating (basically just basal) and starvation ketones almost constantly. We see the endo tomorrow, but I just wanted to get a feel if anyone else has dealt with this.

It has been all consuming of our energy and time. We were just told she couldn't go on the Disney trip and since the trip is in a month we are out $1400 because the money has been spent. I am so tired and more overwhelmed than I have ever been since dx.

[Brenda]

It's called diabulimia. I think that's how it's spelled. No experience with it.

[C6H12O6]

I just want to know if anyone else has dealt with an eating disorder and also D. If I look it up online all I get are references to skipping insulin, eating and running high. We are dealing with no eating, little insulin because of no eating (basically just basal) and starvation ketones almost constantly. We see the endo tomorrow, but I just wanted to get a feel if anyone else has dealt with this.

It has been all consuming of our energy and time. We were just told she couldn't go on the Disney trip and since the trip is in a month we are out $1400 because the money has been spent. I am so tired and more overwhelmed than I have ever been since dx.

Anorexia and bulemia alone are more common in young women with diabetes (w. no omission or manipulation of insulin / diabulimia )

Sorry to hear that Kayla is struggling with this (not to say that it means she is developing ED)

Who said she can't go on the trip ?

Here is a facebook group where you could maybe ask more about this
http://twitter.com/diabeticswithed

[Kaylas mom]

Anorexia and bulemia alone are more common in young women with diabetes (w. no omission or manipulation of insulin / diabulimia )

Sorry to hear that Kayla is struggling with this (not to say that it means she is developing ED)

Who said she can't go on the trip ?

Here is a facebook group where you could maybe ask more about this
http://www.facebook.com/pages/Diabetics-With-Eating-Disorders/141567432550545
http://twitter.com/diabeticswithed

The NP from the endo clinic, her therapist and her GP.. along with Kayla, her dad and I have all agreed that this trip will do more harm than good. She has no friends going on the trip, no nurse that is D trained. It is just a safe environment for her right now. Thanks for the link.

[Ellen]

There is information here and this treatment program has a very good reputation http://www.centerforhopeofthesierras.com/identifying_the_cause.html

[fredntan2]

My older dd had bulimia shortly after her sister was dx.

I had thought sara might have ben getting this, but don't think she is.I've got her in therapy anyways
Aren't teenagers wonderful

[PatriciaMidwest]

No direct experience, just wanted to say I hope you are able to find some good resources. I'm sure it was hard to say no to the Disney trip, but I bet your mother's instinct is right. :) Hang in there.

My daughter learned about diabulemia at camp. There were several girls talking about it (some admitted doing it) and the counselor ( RN & T1) explained how inappropriate/unhealthy it is. My DD knows it is wrong, but I hate it that she knows there is a link between running high and losing weight. Scary.

[Christopher]

Sorry you are dealing with this. It is hard to be sure from your post, but your daughter is purposely not eating? Have you discussed this with her? Has she admitted she is doing this, has she said why? Does she think she is fat? Or is there another reason.

As for the trip, it seems odd that a NP or endo would be deciding what trips your family goes on. It also sounds like you also made the decision not to let her go, so you weren't really "told" she couldn't go, you choose not to let her go, which makes more sense to me. That is a lot of money to lose, did you not realize up front that no nurse was going, or that none of her friends were going, or that it would not be a safe environment? Is there any way of getting the money back, or at least a portion of it back?

[Colleen]

This behavior sounds more like anorexia than diabulimia. I have been in recovery for about 7 years. It was a long 15 year battle. I would recommend getting in touch with a psychologist who specializes in eating disorders and diabetes. See if there are any ANAD meetings in the area. Those meetings are usually free or cost just a couple of dollars in donations to attend. Eating disorders are usually about being able to control something in your life when the rest of your life is out of control. Of course, there are many other reasons for eating disorders. If you need any more info or if I can help you in any way don't hesitate to PM me.

[Kaylas mom]

Sorry you are dealing with this. It is hard to be sure from your post, but your daughter is purposely not eating? Have you discussed this with her? Has she admitted she is doing this, has she said why? Does she think she is fat? Or is there another reason.

?

Thanks for your input. Yes she is aware of what she is doing, she claims she is not doing on purpose but has an overwhelming fear of being sick (throwing up) which raises her anxiety and then gets ketones and so she really does feel sick, it is an endless cycle. She doesn't think she is fat, she has said numerous times she knows she needs to eat, she is too skinny and she can't help it.

You are right, I guess we were not "told" she couldn't go but when we are told it is not a good idea and we are in a situation where we are in contact with the endo's office and the therapist each day trying to keep her out of the hospital, I can't imagine sending her on a trip.. you know?

[Kaylas mom]

This behavior sounds more like anorexia than diabulimia. I have been in recovery for about 7 years. It was a long 15 year battle. I would recommend getting in touch with a psychologist who specializes in eating disorders and diabetes. See if there are any ANAD meetings in the area. Those meetings are usually free or cost just a couple of dollars in donations to attend. Eating disorders are usually about being able to control something in your life when the rest of your life is out of control. Of course, there are many other reasons for eating disorders. If you need any more info or if I can help you in any way don't hesitate to PM me.

Thank you. What is ANAD? The therapist feels this an issue of control, since losing control of her body to D. I really appreciate your post. I do feel this more an anorexia type issue. Please, if you have any other ideas, let me know.

[mishcoto]

Just wanted to say so sorry you are having to deal with this on top of Type 1. It's my 16 year old son who has type 1, not my 18 year old non-D daughter, so I haven't even heard of this. Is it more common in girls?

[Colleen]

Here is a link to ANAD. I used to go to meetings run by the founder of the group. It is a self help group for all ages. I met a girl there who had diabulemia. This was years before I even had my kids. I now understand what she was doing and the harm it was causing her. I would rather not post details that might give ideas to any teenagers peeking in here.
http://www.anad.org/ They have phone numbers on there to call for help and guidance.

[Christopher]

I can't imagine sending her on a trip.. you know?

Absolutely. You have to go with your gut and do what feels right. Not going on the trip when all this other stuff is going on sounds like the right decision. As for the eating issue, I hope she can work through her issues withe the therapist and get back on track. Good luck. :cwds:

[LantusFiend]

Since you're seeing the endo tomorrow, I want to strongly urge you to consider physical possibilities for queasiness and nausea.

I lost twenty pounds about two years ago, when I was 19 and 20, in part because my stomach hurt and I was not hungry. I had gallstones and thyrotoxicity. I haven't regained the weight, because I still have GI disease and because I have some pretty negative associations with food now.

After I was diagnosed with diabetes, I had a lot of foods I didn't want to eat because they had made me feel so sick pre-dx, but I was so hungry at that time that I ate other foods anyways. I didn't enjoy eating though.

[C6H12O6]

Since you're seeing the endo tomorrow, I want to strongly urge you to consider physical possibilities for queasiness and nausea.

I lost twenty pounds about two years ago, when I was 19 and 20, in part because my stomach hurt and I was not hungry. I had gallstones and thyrotoxicity. I haven't regained the weight, because I still have GI disease and because I have some pretty negative associations with food now.

After I was diagnosed with diabetes, I had a lot of foods I didn't want to eat because they had made me feel so sick pre-dx, but I was so hungry at that time that I ate other foods anyways. I didn't enjoy eating though.

However, refusal to maintain a weight at the bottom end of what is deemed healthy, and fear, anxiety, and displeasure surrounding food are criteria for diagnosing / symptoms of ED. Just because someone knows and acknowledges they are too thin doesn't rule out a disordered pattern of eating

There may be seemingly good reasons for these things but they still are indicative of an ED.

(I know the term refusal is not ideal but I believe that is the word the DSM uses)

[miss_behave]

However, refusal to maintain a weight at the bottom end of what is deemed healthy, and fear, anxiety, and displeasure surrounding food are criteria for diagnosing / symptoms of ED. Just because someone knows and acknowledges they are too thin doesn't rule out a disordered pattern of eating

There may be seemingly good reasons for these things but they still are indicative of an ED.

(I know the term refusal is not ideal but I believe that is the word the DSM uses)

The diagnostic criteria for anorexia nervosa (which some people have mentioned) must include:

-Intense fear of gaining weight or becoming fat, even though under weight.
-Disturbance in the way one's body weight or shape are experienced, undue influence of body weight or shape on self evaluation, or denial of the seriousness of the current low body weight.

Therefore, it seems unlikely the OP's daughter has this unless she is not acknowledging a fear of being fat. I may be wrong, but the not eating seems to be more a symptom/side effect of an intense anxiety/phobia of vomiting. From what the OP has shared, Kayla doesn't seem to fit the diagnostic criteria for any eating disorder (even EDNOS) as all require distorted body image.

Avoidance is a common coping mechanism for people with anxiety/phobias. I have had anxiety all my life and was diagnosed with OCD when I was 11. I certainly tend to avoid triggers of anxiety if possible. It sounds like Kayla may be doing this (avoiding eating as it provokes anxiety).

OP have you heard of emetophobia (http://en.wikipedia.org/wiki/Emetophobia)? It is an intense fear, phobia of vomiting and can result in a person avoiding eating. If Kayla has this, treatment for it would hopefully allow her to eat normally again without anxiety. There are many treatments for phobias. Good luck, I hope Kayla gets the help she needs. Anxiety sucks, I really feel for her and you :cwds:

[C6H12O6]

The diagnostic criteria for anorexia nervosa (which some people have mentioned) must include:

-Intense fear of gaining weight or becoming fat, even though under weight.
-Disturbance in the way one's body weight or shape are experienced, undue influence of body weight or shape on self evaluation, or denial of the seriousness of the current low body weight.

Therefore, it seems unlikely the OP's daughter has this unless she is not acknowledging a fear of being fat. I may be wrong, but the not eating seems to be more a symptom/side effect of an intense anxiety/phobia of vomiting. From what the OP has shared, Kayla doesn't seem to fit the diagnostic criteria for any eating disorder (even EDNOS) as all require distorted body image.

Avoidance is a common coping mechanism for people with anxiety/phobias. I have had anxiety all my life and was diagnosed with OCD when I was 11. I certainly tend to avoid triggers of anxiety if possible. It sounds like Kayla may be doing this (avoiding eating as it provokes anxiety).

OP have you heard of emetophobia (http://en.wikipedia.org/wiki/Emetophobia)? It is an intense fear, phobia of vomiting and can result in a person avoiding eating. If Kayla has this, treatment for it would hopefully allow her to eat normally again without anxiety. There are many treatments for phobias. Good luck, I hope Kayla gets the help she needs. Anxiety sucks, I really feel for her and you :cwds:

You can have traits of an eating disorder / disordered eating without meeting the DSM criteria. The same goes for many conditions listed in the DSM ex. many people have traits of certain personality disorders but would not meet the diagnostic criteria by most accounts.

Besides that for bulimia nervosa and anorexia nervosa, they use modified criteria for diagnosis when someone has diabetes.

Clearly, Kayla’s D team is monitoring things closely before they jump to any conclusions. I think that's what's mportant.

There is a lot more nuance when it comes to the issue of ED when someone has diabetes and I think most pediatric diabetes teams are well aware of this fact.

[miss_behave]

You can have traits of an eating disorder / disordered eating without meeting the DSM criteria. The same goes for many conditions listed in the DSM ex. many people have traits of certain personality disorders but would not meet the diagnostic criteria by most accounts.

Besides that for bulimia nervosa and anorexia nervosa, they use modified criteria for diagnosis when someone has diabetes.

Clearly, Kayla?s D team is monitoring things closely before they jump to any conclusions. I think that's what's mportant.

There is a lot more nuance when it comes to the issue of ED when someone has diabetes and I think most pediatric diabetes teams are well aware of this fact.

I understand what you're saying, however, some of the primary features/traits of eating disorders are distorted body image, obsession with weight and fear of weight gain, and in the absence of these, it seems an unlikely diagnosis. From what we've heard, it seems the OP's daughter has the features of an anxiety disorder/phobia more than an eating disorder IMO.

[C6H12O6]

I understand what you're saying, however, some of the primary features/traits of eating disorders are distorted body image, obsession with weight and fear of weight gain, and in the absence of these, it seems an unlikely diagnosis. From what we've heard, it seems the OP's daughter has the features of an anxiety disorder/phobia more than an eating disorder IMO.

Well what you are saying would be true (but these are not absolute criteria) if you were speaking about anorexia only, but often not true of bulimia, and remember those are not the only two recognized eating disorders.

I think you are looking at the issue very simplistically, but I am not going to counter what you have said point by point.

Your version of ED is kind of like the Hannah Montana diabetes episode "no sugar, sugar." To you the things you are saying about ED seem obvious and self-evident. Well to most people it is obvious and self-evident that people with D should not eat chocolate bars (as per Hannah Montana and probably many of your nursing texts.) However, both of us no better than that.

It is about 100 times more complicated than reducing it to distorted body image and fear of weight gain, not to mention the very act of starving oneself distorts one's perception. Therefore, the original reason for restricting also matters.

[Kaylas mom]

Avoidance is a common coping mechanism for people with anxiety/phobias. I have had anxiety all my life and was diagnosed with OCD when I was 11. I certainly tend to avoid triggers of anxiety if possible. It sounds like Kayla may be doing this (avoiding eating as it provokes anxiety).

OP have you heard of emetophobia (http://en.wikipedia.org/wiki/Emetophobia)? It is an intense fear, phobia of vomiting and can result in a person avoiding eating. If Kayla has this, treatment for it would hopefully allow her to eat normally again without anxiety. There are many treatments for phobias. Good luck, I hope Kayla gets the help she needs. Anxiety sucks, I really feel for her and you :cwds:

Thanks, her therapist does feel the anxiety is the root of all of this. We see the endo today so I will have a better feel on what is going on tonight. Thanks for everyone's support. I think she is a scared girl who feels so totally out of control right now. I can't imagine being 15 again, let along with this d@#$ disease on top of that.

[leeannthill]

I had bulimia and diabulimia for 18 years, but I'm fully recovered now. I actually just wrote a post about it on my blog yesterday because it's National Eating Disorders Awareness Week, sponsored by NEDA (http://www.nationaleatingdisorders.org/index.php), another great ED organization and resource. Maybe you'll find their website helpful.

Besides traditional talk therapy, I would suggest investigating some relaxation and mindfulness therapy/training as a way to ease her anxiety. Of course, there are anxiety meds, which I assume you've discussed with the doctors. I think a lot of people see meds as a last resort, but if her health is in danger, it might help. Most anxiety meds have an addictive component, but Buspar is a non-addictive anxiety med, and there's a generic form.

I know Ellen posted the link to Hope in the Sierras. I know the marketing director there, and she's told me a lot about their program. It sounds like a great program, one that sorely needs to be replicated in other areas. If you're looking for additional specialized treatment resources, Parc Nicollet in Minneapolis offers services for diabetics with ED's, Joslin in Boston offers out-patient counseling and phone consults, and Behavior Diabetes Institute in San Diego offers programming for parents and teens on a range of mental health issues. I didn't catch where you're located, so I don't know if any of those are in your area. No matter the psych issue, it is very disappointing that there are so few resources for the diabetes community specific to mental health, especially in light of how common mental health issues are.

(Initial disclaimer: I'm an art therapist)
Besides all that, creative arts therapies are great treatment options for teens and for ED's, although I know there has been discussion about whether or not she has an ED or an anxiety disorder. Psych diagnosis is really tricky, and frankly, not especially fail proof, and in my opinion, sometimes given more weight than it warrants. Anyway, regarding the creative arts therapies, they can be more effective than traditional talk therapy because they bypass a lot of the defense mechanisms. I'm fond of the analogy of a road when explaining arts therapies. In talk therapy, you're on a single lane road, and should there be something that slows or blocks progress (defense mechanisms at work), then you have to work through them (which is good when you do, but can also take a long time, depending on the individual). If you're using arts therapies, you have both the advantages of talk and arts expression to communicate, so analogous to a two-lane road. If one lane is blocked, you can slide into the other lane, and in theory, get to your destination more quickly. Arts therapists are trained in theories of psychotherapy and counseling, but also have the advantage of their arts-based modalities (art, music, dance/movement). It's great for people of all ages, but kids and teens seem to take to it more readily because the art form serves as a mediating element between the client/patient and therapist, so it feels safer and less direct.

As I said, I am an art therapist so I'm biased, but I do it because I love it and I believe in it. It helped me once upon a time with my ED, and actually, I'm seeing an art therapist now because my father committed suicide last winter. It's helped the clients and patients with whom I've worked over the years. Maybe one of the arts therapies would help your daughter better get to the root of what's causing her anxiety and propelling the behavior.

Best of luck, and my sympathies about the turmoil this is causing your family. That's how a constellation of symptoms such as your daughter's manifests itself. It's really hard on everyone involved.

[wilf]

I just want to know if anyone else has dealt with an eating disorder and also D. If I look it up online all I get are references to skipping insulin, eating and running high. We are dealing with no eating, little insulin because of no eating (basically just basal) and starvation ketones almost constantly. We see the endo tomorrow, but I just wanted to get a feel if anyone else has dealt with this.

It has been all consuming of our energy and time. We were just told she couldn't go on the Disney trip and since the trip is in a month we are out $1400 because the money has been spent. I am so tired and more overwhelmed than I have ever been since dx.

We had a run in with precisely this sort of situation last summer. We ended up trying not to make too big a deal about it - but did tell DD we thought she was too skinny, and had her endo and other adults she knows and respects provide some input about the need to put on a bit of weight.

We also filled the kitchen with tasty high calorie low carb edibles (like salted nuts) that she could graze on.

I'm not sure why the Disney trip is being cancelled. DD's numbers were great when she was undereating, with few lows. I would consider striking a bargain - where if she pledges to work towards putting on a few pounds (and starts NOW) she gets to go.. :cwds:

[wilf]

Thanks for your input. Yes she is aware of what she is doing, she claims she is not doing on purpose but has an overwhelming fear of being sick (throwing up) which raises her anxiety and then gets ketones and so she really does feel sick, it is an endless cycle. She doesn't think she is fat, she has said numerous times she knows she needs to eat, she is too skinny and she can't help it.

You are right, I guess we were not "told" she couldn't go but when we are told it is not a good idea and we are in a situation where we are in contact with the endo's office and the therapist each day trying to keep her out of the hospital, I can't imagine sending her on a trip.. you know?

Has she had bad ketones, or just chronic low to moderate (which you'd expect to see when dieting or undereating)?

It might be an idea to ease off on the ketone testing, unless there have been spikes to high ketones.

[Kaylas mom]

Has she had bad ketones, or just chronic low to moderate (which you'd expect to see when dieting or undereating)?

It might be an idea to ease off on the ketone testing, unless there have been spikes to high ketones.

Occasionally high, but more hanging out in moderate range most of the day.

We saw the endo and she is being referred to an eating disorders clinic and also to a psychiatrist to get some anti-anxiety meds on board along with the antidepressant.

I feel like we are making improvements. I hope it continues.

[joan]

Occasionally high, but more hanging out in moderate range most of the day.

We saw the endo and she is being referred to an eating disorders clinic and also to a psychiatrist to get some anti-anxiety meds on board along with the antidepressant.

I feel like we are making improvements. I hope it continues.

I am glad to hear that the endo was so quick to get things going. Good Luck.

[dejahthoris]

Since you're seeing the endo tomorrow, I want to strongly urge you to consider physical possibilities for queasiness and nausea.

I lost twenty pounds about two years ago, when I was 19 and 20, in part because my stomach hurt and I was not hungry. I had gallstones and thyrotoxicity. I haven't regained the weight, because I still have GI disease and because I have some pretty negative associations with food now.

After I was diagnosed with diabetes, I had a lot of foods I didn't want to eat because they had made me feel so sick pre-dx, but I was so hungry at that time that I ate other foods anyways. I didn't enjoy eating though.

Interesting insight LF, it could be physical problem as well. It's very important to look at all possible angles. At any rate, I wish KM's daughter the best. Having teen daughter is way tough, even without the health issues! They do grow up:)