Sorry this has taken so long, I have been having computer problems, and just got it working yesterday. Here is some things I have been wanting to say...........
I’m Michelle, Kaytee’s Mom. I would like to tell you all more about this “disorder” since many of you do not understand what Diabulimia is. First of all this is not a term that the medical profession came up with, they refer to it as an “other eating disorder.“ It was the media that came up with the term.
My entire purpose of coming onto the Dr. Phil show was wanting to let other parents know that this disorder does exist and what to look for so that you can be aware of the situation and can maybe intervene sooner, to have Kaytee meet other Diabulimics so that she can communicate with someone that is going through what she is going through, and to look for someone that could help her because nothing we seem to try is helping. I was so in the dark. I had no clue that this was being done or could be done. I didn’t want anyone else to have to go through this.
Kaytee initially wanted me involved in her regime. I would plan out her meals and let her know how much insulin to take. Then one day, when I went to give her her shot, she said she had already done it. I didn’t think much of it, other than she is feeling more comfortable with the diabetes. She started spending lots of time in her room. Again, I just thought it was a teenage thing. However, what I didn’t know was that she was binging at night after I would go to bed or after she would get home from school. She started to lose weight. I watched her and noticed that she was eating, but only smaller portions.-so I figured she was doing it the smart way. Then she started with major mood swings. One minute she’d be happy and laughing, the next, yelling and screaming. Where she used to be nice when I would ask her about her sugar levels, whether she’d taken her insulin, she would get mad that I was intruding-slamming her bedroom door. She started complaining that she didn’t feel well. She was weak, her face was drawn, shallow breathing, she got thrush, she had yeast infections, she got strep. I took her to the doctor every time I turned around. We had her in the ER twice because she was dehydrated from losing so much weight. After the second visit to the ER, her Endocrinologist called us in and that is when we discovered that Kaytee had not been taking any of her insulin. She had figured out that if she used her control solution (what she referred to as fake blood on the show) she could get a false reading. So when I was checking her meter thinking she was doing everything right and that her levels were good, she had me fooled.
Luckily my Endocrinologist have known about this “disorder” for many years. In fact, there are approximately 400,000 diabetics that suffer from this. However, most doctors/therapist do not know about this, many have never heard of it, or just have recently heard of it. Most have never had to deal with someone going through this. I was told by someone that an eating disorder is an eating disorder, whether you purge, restrict food, or restrict insulin, it’s all the same and the medical professionals can handle it. They know what to do. However, I don’t believe that they are prepared. I have talked to five separate therapist in the St. Louis area, only 2 of the five had heard of the disorder, none of them know a lot about diabetes. Of the three eating disorder facilities that I called, none of them had dealt with diabulimics, and of the 31 that Wanda called, only two had dealt with diabulimics. When I put Kaytee in intensive outpatient therapy (IOP), the facility would not let the girls leave the room for an hour after eating so they couldn’t purge, they would also check their meal plan to make sure the food they had complied, if not, they were given a health drink. However, for my daughter, they would not make sure that she checked her sugar or take her insulin. I was told they didn’t have time to make sure she did so and also that even if they made sure she did it at IOP, it wouldn’t make her do it when she wasn’t there. Well, wasn’t this her issue? Her form of eating disorder. Just because they didn’t let the purger purge and the anorexic restrict while at therapy, that doesn’t mean that they were not going to comply when they weren’t at therapy either. Another reason why I feel they aren’t ready, is because there are so many aspects to it, depression, the eating disorder, the diabetes, and most therapist/residential facilities don’t deal with all the issues, they deal with one or two, but not all three. Yet, another point…Wanda had been with her Endocrinologist for 17 years and he never knew what she was doing or questioned her why her sugars were so out of control. But once she came out and told him what she was doing, he dropped her and said that she was too much of a high risk!!! Why didn’t he recognize this before and do something in the 17 years he was her doctor????? A final thing that also comes to mind with Kaytee to show that therapist/residential may not be ready is when she had told her therapists that she had thrown up three times that week, but the therapist didn’t bother to tell me about it. The next day is when she went into diabetic keto acidosis (DKA) where the body has such a build up of toxins from the sugars being so high that your organs can start shutting down and you can go into a coma and you could also die!!!! We had to have her air lifted down to the hospital. Had the therapist told me we may have been able to prevent the entire incident. I’m not even sure that they knew that that was a symptom of the disease. But again, my point, I don’t think they are fully prepared. I’m not criticizing them, I’m just saying that it is a complex issue.
My daughter’s Endocrinologist told me that this “disorder” seems to occur in young girls, usually 12-16 that are diagnosed with type 1 diabetes. They didn’t tell me everything about it, but did say that they feel that some of the things they feel trigger the disorder is that you are a teenager and already have so much going on in your life, with hormone changes, going to high school, the need to fit in, wanting your independence, being like your friends, being able to run around and have fun, and then WHAM….you’re a diabetic, you’re being told you can’t eat this, you can’t do that, you have to test your sugars, you have to take your insulin. You can’t sit and pig out on pizza/candy/soda with your girlfriends on a Friday night, you have to go to the school nurse every day to check your sugars/take your insulin before you can go to lunch and eat, YOU ARE DIFFERENT THEN EVERYONE ELSE!!!! Hence the problems begin-Don’t‘ you remember being a teen? Then you discover by whatever means that if you stop taking your insulin, you lose weight, you can eat what you want, how much you want, and not gain wait. It’s so easy, and once you start, it is not easy to stop. Why should you. You’re young, and your invincible and nothing is going to happen to you, it may to them, but not you. Another thing I read was that one in three diabetics develop some kind of eating disorder. You are so regulated and focused on your diet, that food becomes such a focus, that it just happens.
Like many that suffer they feel they are the only ones that are going through this, and now that there is a name for this, many feel that there is hope and know that they are not the only ones going through this horrible ordeal. Wanda is searching for the help she needs, I am searching for the help my daughter needs. Someone mentioned that this was their choice to do this to themselves, but in reality it is not. It is something that takes a hold of your life and you can’t just wish it away. It is like being a drug addict, alcoholic, anorexic, or bulimic. It is something that is so powerful that you just can’t stop. It is not just about weight, it is about your self image, your self esteem, your mental state. It is much more than girls being selfish/reckless/obsessing about weight.
In my daughter’s case, she also suffers from depression, so that combined with the diabetes and the disorder, it is a very difficult ordeal. Once I figured out that she was manipulating her meter to get a false read so I would think she was taking her insulin, I immediately worked with the doctors at Children’s Hospital to help get her on track. I have written letters and made numerous phone calls to my insurance company to try and get them to cover a residential facility, I have had her to her pediatrician, endocrinologist, adolescent medicine doctor, dieticians, social workers, therapist, and put her into Intensive Outpatient Therapy (six days a week/3 hours a day), which as you know from the show didn’t work out. I have prayed, I have yelled/screamed, cried, been the bad mother and taken everything away, been the good mother and given her things, I have spent almost $6,000 in copays, put over 6,000 miles on my car, I have missed countless days of work, had to leave early, come in late, make up time, in order to get Kaytee the care she needed. I don’t think that I have been an inactive participant in this process, like led to believe. One other thing that really upset me was when I was told that I need to do what I got to do to get her the help, at the risk of losing my house, and that nothing is guaranteed in life, yeah, I know that nothing is guaranteed in life, however, I was taking all the steps I could think of first before we go to the extreme. It is not just my daughter, I have a son, and it’s not fair to him to give up everything we’ve worked so hard for. We don’t live in extreme, we’ve live within our means, and the thought of going broke, for something that isn’t guaranteed is scary. It also affects Kaytee, how do you think she feels knowing that she would be the cause of us possibly losing our home, we are a family and have to do what is best for us as a whole, but I will do what it takes.
If I can say anything, it’s do not judge what you don’t understand. If you have a child with diabetes, know that this exists, and that a child will do whatever it takes to keep this their secret. If you notice any symptoms, take them to their doctor immediately and tell them your concerns. If they don’t know what it is, have them contact the St. Louis Endocrinology department and have them explain. If you want to talk about this, you can email me at
Parents, listen up! It’s a new year, and the risky behavior of teens is ever-evolving into dangerous new trends propagated on the Internet. Is your teen involved in an activity that would shock you? First, Cody, Connor, Grayson and Garrett are teenage friends who film themselves doing daredevil stunts and then post them online for the public to view. The latest trend is called mattress surfing, where kids ride on top of a mattress being dragged behind a truck at top speed. The boys say they do it safely, but what do their parents think? The answer may shock you. When a family shares their tragic true story, will the boys see that mattress surfing isn’t just fun and games? Next, many people feel this practice is inhumane when it’s done to animals –- but now some teens are putting their health at risk to do it to each other. Then, Kaytee is a 15-year-old diabetic who says she’d rather risk dying than be fat. She engages in diabulimia, a deadly new practice of skipping insulin doses to lose weight. Wanda has been a diabulimic for 15 years and is lucky to be alive. Will these women stop their slow suicide? Join the discussion.
