Registered: 1494975358 Posts: 8
Reply with quote #1
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.
Registered: 1452437794 Posts: 2,167
Reply with quote #2
A big wave from across the pond, of course I remember you. Congratulations on getting this far and getting her to a much healthier place than she was in 2015. You have made good progress. Firstly the fact that she is not 100% free from AN is typical, as she has only been treated for the last 2.5 years. You know that its a marathon and not a sprint. Average recovery time is 5-7 years with best cases 2-3 years. Regarding her weight. This needs to be going up, she needs to be gaining right up until her 20's. Also I am taking a guess that she is not properly weight restored and is going through a growth spurt given the upsurge in behaviours. Her bmi is approx 20. Many of us had to go much higher than that to see recovery ( for us bmi 24). I would get the weight on her and fast. I definitely would not give her more control of her eating at this stage, I would actually go back to basics and cook and plate everything with full supervision.
For us, we have never reduced the amount of calories. We still need at least 4000 -5000 cals per day without fail.
I have heard Dr Peebles talk about many patients need 4000 cals a day for 4 years.
This is a great thread started by mamabear.
Also here is a wonderful video that is well worth watching from Dr Peebles at CHOP.
__________________ Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, and Living life to the full, like a "normal" teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
Registered: 1521119942 Posts: 65
Reply with quote #3
One thing I saw is that you mention she gets naseus even when she hasn't eaten for hours. My understanding is that she needs to eat every 2-3 hours always.
Registered: 1504356889 Posts: 66
Reply with quote #4
Wow, what progress you have made warrior Mum! Nausea between meals, we had this too, for my D it was due to acid re flux, it was quite bad for a short time, too much space in between meals. We did the same as debra18 suggested and introduced much needed snacks, so D now eats something every 2-3 hours. Something else perhaps, Although my D has no period at the moment, before her period stopped, she was extremely nauseous in between meals, acid re flux as well as hormone imbalance. Totally agree with Toothfairy, don't let her in the kitchen to prepare her own meals, not yet anyway. I made this mistake, for me, it made my D restrict even more and became very obsessed with meal plans, weighing food, looking at labels and building a really strict routine and increased anxiety. I now prepare meals, but have only managed to take over recently, it took a battle to remove her from food prep. Also, they need to eat what is on the plate and know that is is going to make them better, they really don't need know how much oil went into that soup, or how much cream went into that smoothie etc... (says I who is still struggling to get more calories in my D, but I know it's the right thing). Cannot wait for my D to get back into the kitchen, she loves to cook and makes a great quiche, but it's far from appropriate at the moment. Sending strength and hugs to you. __________________ D15, AN. 5' 8" and 46kg. Diagnosed and hospitalised in Sept 2017 for 9 days. At home since in recovery/relapse. In the trenches and tackling FBT.
Registered: 1492110966 Posts: 337
Reply with quote #5
You have done so well! Way to go! As for your questions, I really think you need to increase weight. At 14 I don't know if she is ready for more control. There is a KArtini quote that toothfairy posted a few times and for me it made a lot of sense. They continue 4000 cal per day for a few years after WR. There is no harm in the weight increase and it may help her. I wonder if you give her too much control too early, the ED will be happy and take over again. Maybe when she is leaving food on the plate she is trying to tell you "mom, keep me safe- don't let ED make me do this" So my opinion is the same as toothfairy's, keep the control and feed more and push up the weight. As for the nausea, could she be hungry and feels it as nausea? When I get so hungry, I feel sick. How often is she eating? Maybe a snack a couple of hours prior to the meal, to keep the blood sugars steady may help? As for the new school next year, would you be able to talk to the principal prior to school starting to give them a heads up? I talked to my D's new principal (grade 7 age 12) and guidance counsellor in June 3 months prior to starting at the new school and the gym teacher to let them know the situation and that I may veto certain activities such as"health class" and certain sports in gym etc. That helped her I think as she did not have to make things up if she was uncomfortable. I know it is not the same as your D is going to high school so that is a huge step. I do hope that there might be something that you can use from what I posted above.
I do remember reading your posts. I hope all goes well
XXX Food+more food+time+love =healing--->recovery
Registered: 1454901521 Posts: 322
Reply with quote #6
Your d's behaviour is very similar to my own. Although WR now for a year or so, she still leaves bits and pieces on her plate and complains of nausea. As Clem said, the nausea was due to acid reflux and I gave her aloe vera juice to strengthen her stomach lining, which helped (a glass a day until the complaining stops). Making sure she eats every couple of hours is also a good idea. I would return to blind weighing, ED might be whispering in her ear if she knows her weight and I agree with what the others have said to take back complete control. I quickly put your d's weight and height into a weight, height vs age graph. At 13 years she was on the 25% curve for height and the 55% for height. Now 1.5 years later, she has slipped below the 40% for weight and is below the 10% for height. So to answer your questions: "1) Do you think she needs to return to therapy with a FBT/ED specialized therapist?" That might be a good idea. Not eating enough can cause anxiety, which can't get better until the weight is up. "2) Do you think she needs to gain more weight?" Yes, I would get her back to 55% weight curve. "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.)" As the others have said, I think she needs less involvement with food preparation, not more. When I gave my d more control over supper (snack after dinner), she just chose salad, so I had to take back control and choose for her, just giving limited choices. Whenever you give control and it doesn't work out, it takes effort again to take back control. "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." That is my d to a T! For me it means she can't take control and hasn't return to intuitive eating. I don't know if she would ever be able to feed herself intuitively, but hopefully she would get into the habit of eating often and choose the right amount of food with time. Like your d, my d would show signs of completely shaking off this illness and just when we start to relax, ED is back! Sending lots of hugs! __________________ D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for a year and WR at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.