I haven't posted here for a very long time, and my visits to the forum have dropped down from many times a day to once or twice a week. (I used to have a different username, MDmama, and had to change it due to technical difficulties, so I've been around longer than my current profile suggests.) My daughter is SO much healthier than she was a few years ago. I'm incredible grateful. But she is not 100% free of her AN, and so I find myself here again, reading and looking for ideas.
I'm sorry, this is going to be LONG. But here's the background:
DD was diagnosed with RAN in Nov. 2015, the week she turned 12. She had started restricting in the spring, then became a vegetarian, made other strange food rules for herself, became obsessed with baking (for others!), etc. All textbook behaviors for an ED kid, as I later learned. She had played soccer for years but developed an exercise compulsion during the summer, probably fueled by what we thought at the time was a great family activity-- watching the women's world cup (soccer) on TV together. (Her younger two siblings also play soccer). She was secretly doing pushups, sit-ups, running in place in her room.
Thanks to good advice from a friend who is an ED therapist, we got my D into her pediatrician's office, and after a few roadblocks, got a diagnosis and were seen quite quickly by the head of the eating disorders clinic at Children's Hospital in Washington DC. (Our pediatrician is well-connected, and I was never more grateful for his relationships than I was when DD got into that office as quickly as she did.)
I found this board on my own before DD was even diagnosed, and started refeeding on my own, and then more aggressively once we had a relationship with the hospital clinic. Within three weeks of the diagnosis, though, DD's condition had rapidly deteriorated and she needed to be hospitalized due to a low heart rate. In retrospect, this was the best thing that could have happened. It was stunning and distressing, and she was shocked and we were devastated, but she was well cared-for, started putting on weight as soon as an NG tube was installed and she followed their meal plan, and became a model patient. She was discharged after six days.
I threw myself into refeeding her at home, to prevent her from having to go to a PHP program, and succeeded. From that point onward her weight only increased; she got her period for the first time just six weeks after she left the hospital; and after taking a semester off, she returned to a (low-key) soccer team and continued to put on weight and eat beautifully. She continued with therapy through Children's, weekly checks of her vitals, and occasional physician checkups for another six months or so, and then we determined together that we could stop the therapy (her therapist was also leaving the office at that time).
She's now 14 and a half. I weigh her (no longer blindly) every 2-3 weeks at home. She continued to grow slowly until shortly after she turned 13, but hasn't gotten any taller since then; she is just five feet tall (not unusual in our family). Her weight has basically plateaued, fluctuating between 104 and 109 pounds since early 2017, nearly a year and a half ago. She has had some anxiety issues over the past year that motivated us to seek a new therapist, but at the time (lsat summer), the problems seemed unrelated to eating, so after a long talk with the head of the ED clinic at Children's, we determined to use a therapist who specializes in teen girls and anxiety but does not have ED/FBT training. D still sees her weekly, and likes her, but I can tell that when I ask her to discuss her lingering eating problems (which have mostly resurfaced over the past six weeks), nothing useful comes of it. I don't blame the therapist, but this is not her area of expertise.
As far as eating goes, I still prepare 95% of what she eats. I still add extra butter, oil, etc. to as much of her food as possible. I still require morning and afternoon snacks as well as dessert after dinner. She does go on sleepovers with friends and seems to eat pretty well when she's with them, but she is not independent at all when it comes to eating at home. She will give suggestions of what she wants, but does not serve herself enough if I let her serve or prepare her own food, and she knows nothing about the ways that I add extra calories when I do the preparing. The thing that drives my husband crazy is that she will never, never accept a second serving, no matter how small the first may have been (though of course it usually isn't, if I'm serving!) and no matter how hungry she must be. She does walk through the kitchen and grab a cookie if I've just made them and they're sitting out. She does say, "When is dinner? I'm hungry," and she does request fast food, and get excited about decadent desserts, and accept a big glass of milk with dinner every night. But her eating is not *quite* normal.
Most recently, she began to leave a few bites on the plate after every meal-- something she used to do when her ED was really entrenched. I called her on it, and she acknowledged it and is now trying to finish all of every meal, but she says it's sometimes hard. And the other new development is that she will suddenly feel nauseous when she's faced with a meal-- even a food she's requested, even when she hasn't eaten for hours, has exercised, and must surely be hungry. Yesterday for the first time I saw not only the nausea and the tears but an actual heave as she almost vomited, which I have never seen before. When this happens lately, I have her get up from the table, do something different for 10 minutes, then come back and try again, while reading, playing on her phone, or talking with me as a distraction.
She says she's really upset and frustrated that this is happening, and she doesn't know how to manage it. She's mad that the other mental health stuff, the anxiety that cropped up last summer and fall, has finally disappeared and now the eating troubles are back. My husband is very concerned because he sees the months slipping by as she gets closer to moving away to college-- we know too well that four years will vanish in a heartbeat. In the shorter term, she is heading to a huge new high school in the fall, where (unlike her current small private middle school) there will be no school-wide snack period midmorning, no teacher who knows her whole history and pack of close friends by her side all day who also know her story and support her every bite.
I have a feeling I know what you wonderful parents are going to say, so here goes:
1) Do you think she needs to return to therapy with a FBT/ED specialized therapist?
2) Do you think she needs to gain more weight?
3) Do you think she needs to take a little more control (with my supervision) of her eating? (We have discussed doing this over the summer, when she's home and I can assist her. I work from home and will be around her almost all summer long.)
For a while there, it looked as though she was 100% free of the ED thoughts and behaviors. Her dad and I hoped so very much that she would be the rare child who, thanks to an early diagnosis and intensive, quick weight restoration, would be "cured" of AN. But I see now that this is going to be her struggle for a long time. And it makes me sad and frustrated.
If you read this far, thanks for your perseverance-- this turned into a novel! Thanks in advance for any advice.