I was ill and was not supervising her food, or her care. And her way of coping was to stop eating. I did not see her for 2 months. It was terrible to be away from her but honestly I was so sick I don't remember a lot. Her Dad called me at one point to tell me that she was hospitalized in the other State with "the stomach flu". This, by the way, was the first opportunity that medical professionals without training, missed a diagnosis for my daughter. They missed the eating disorder signs. Her Dad brought her to the hospital because she had fainted. She had most likely been dehydrated, had low heart rate, electrolyte imbalance. But the workup and diagnosis was stomach flu. Not only did they miss the diagnosis, the treatment was typical of most hospitals - lots of fluids - this in itself is very dangerous. Failure to recognize patients with eating disorders can lead to immediate cardiac arrest if improperly treated.
By the time I saw her, she had lost a tremendous amount of weight. She was weak, and I did not understand why she was exercising so much. I, at that time, knew nothing about eating disorders. I took her to the pediatrician who said that she looked awfully thin and that I should feed her more. Not a diagnosis - but second missed opportunity. By the next fainting episode, she was hospitalized at the children's hospital and then sent for treatment at an eating disorders residential treatment center (RTC). In that day and age, there were very few Centers and understanding of young children and the disorder was near to nothing. The Center she went to was made up primarily of women with severe issues - women who along with their eating disorders, had experienced trauma such as rape. My daughter, at 12 years old, was in therapy groups with women talking about things that turned out to be traumatizing for her. And even worse, and so very damaging, is that she learned how to be a very "good anorexic". She learned from individuals who were very ill how to support her illness.
We were new at this and had a dual income. We had not run out of money yet. Insurance paid part of the bills, we paid part of them.
Now she is 20. There is much better research about Family Based Therapy, and best practices. BUT there is little, to no training, in medical facilities.
My daughter has been in treatment Centers in Missouri, Utah, Colorado, Virginia - she has been in and out of hospitals for years. She is currently inpatient in a State across the country from me.
A little lesson - for a person with an eating disorder, there are different places for treatment. The continuum of care tends to be from most restrictive to least restrictive 1. inpatient treatment (this is a hospital based program for patients needing feeding tubes, nursing and medical care 24/7). The patients here are the most ill. 2. residential treatment center (patients lives 24/7 with other patients receiving supervised meals, group, individual, and family therapy) 3. partial hospitalization program (patient goes to the hospital during the day, or supervised living at night), and 4. outpatient team made of a) medical doctor, b) nutritionist, c) individual therapist, d) family therapist) and
Guess what - my insurance does not pay for residential treatment now. This is a new change - Blue Cross Blue Shield Federal. My daughter has been inpatient for 6 months. The care she needs is residential treatment - she needs to be able to interact with peers, go on outings, practice being social. But insurance does not cover it. The doctors know that she needs the care so they lie to the insurance company saying that she needs to be inpatient so that she is not kicked out. Some docs will not do this.
My family is out of money. We cannot pay for what she needs - residential treatment. My daughter now has full blown osteoporosis - at 20. If she falls, she will break a bone, or several. Insurance covers Forteo shots inpatient; once she is outpatient, the shots stop. There is no hope for her bones.
If she comes home still ill, I have been told that she will die. I'm waiting for the day to come, any day now, for the insurance company to call and say that they are done paying. It happens all the time. If I get cancer in my ovaries (they are watching for that based on my history), insurance will cover my next surgery. No doubt.
I have been getting wonderful support from families who sadly have lost their children. I'm marching against ED for them, and for my daughter who now is still alive, but is in grave danger.
Why I March for ED
My daughter has anorexia nervosa. When not in treatment, she ends up in Emergency Rooms with various symptoms. She may have a fainting spell, or heart palpitations - she goes out of fear herself, or via ambulance.
Can you imagine what it might be like if your relative was having a heart attack, and when to the ER, and received a workup for gallstones? Your relative might die. The same thing happens when a person with an eating disorder goes to the hospital and untrained medical personnel treat the person for dehydration or for a possible neurological condition. The docs may miss the signs of an eating disorder low heart rate, orthostatic, dry hair, nails, and skin, loss of hair on head,- excessive hair all over body known as lanugo, blue feet and hands, anemia, and instead give the person several boluses of fluid. This can trigger severe electrolyte imbalance and potentially a heart attack. It happens. They may send the person home, missing the opportunity to counsel the person appropriately, providing diagnosis, resources and appropriate transition to care to save their life.
I am in another State and am afraid that the next time this happens to my daughter and I am not there to train the medical personnel, the doctors will "mistakenly" kill her.
That is why I march for ED.
This is why we all must MARCH AGAINST ED