Registered: 1525619972 Posts: 2
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Hi, I am new to this. My daughter was just diagnosed with Anorexia. We are devastated. How could I not have known. We are going to her primary doctor on Tuesday. What should I be asking him? She has an internship starting in a week, and I am not sure if she should go. This is all killing me, I feel as a mother, I have failed. Any advice would be great
Registered: 1504356889 Posts: 124
Reply with quote #2
So sorry you find yourself here danielle3.
First thing - deep breath! Second thing - this is not your fault, you are not a failure whatsoever and this is not your Ds choice nor fault either. You will find a lot of support and very good key advice on this forum. You have made the first step, by seeking out FEAST. I am in the 'trenches' with my own D, but find the advice and suggestions on here the stuff that gets me through even the darkest days. How old is your D? and what country do you live in? This will help a lot with advice. There are a lot of resources here too http://www.feast-ed.org/?page=LearningCenter I found this section to be really useful in the early days of trying to get my head around it, understand and how to approach it. Sending lots of hugs and strength from the UK. xx __________________ D15, Restrictive AN. 5' 8" and 51kg. Diagnosed and hospitalised in Sept 2017 for 9 days. At home since in recovery/relapse/recovery. In the trenches and tackling FBT. Not a vegan anymore!
Registered: 1436500021 Posts: 1,083
Reply with quote #3
Dear Danielle 3,
Welcome to ATDT. Though I am sorry you need to join us here I am hopeful that you will be able to help your daughter fight the illness. Please do not feel as though you have failed. Eating disorders are not caused by families or parenting styles. They are biological, brain-based illnesses with metabolic components and genetic influences. They are treatable illnesses. There is a wealth of information on the FEAST website. This is a good place to start learning and preparing yourself to help your daughter. The essential resources have the FEAST family guide series, which might be helpful for you as you try to navigate the immediate questions you may have and how to proceed to get her effective, evidence based help. http://www.feast-ed.org/?page=LearningCenter Also, you could take a look at Eva Musby's website. She has written an excellent book with practical suggestions for refeeding, as well as created some helpful videos. https://anorexiafamily.com/ How old is your daughter? When you say she is starting an internship, is that close to home? If the internship is far and she will be on her own, for her health it may be preferable for her to remain at home with you until such a time as she is weight restored and able to eat enough on her own. How underweight is she at the moment and how much is she eating? As you talk about a primary dr. I'm wondering if you are in the US and if so, there are a number of different treatment options to choose from, and your decisions will depend on your family situation, the severity of your daughters illness and your resources. We did not find our daughter's regular GP enormously helpful however there are dr.'s who are specially trained in eating disorders who we did find very helpful so you may want to look into taking her to a specialist after that meeting with the GP if it doesn't seem helpful. Treatment options can vary. FBT, Family Based Treatment, is an option where your daughter would remain at home and her family would refeed her under the guidance of a specially trained therapist. There are also other options, Residential treatment, if the sufferer is very underweight and suicidal, with self harming and/or purging and food/or food refusal behaviors which cannot be interrupted at home. There are also day programs called PHP, (partial hospitalization programs), where the sufferer will go during the day and have therapy and supervised meals. IOP, (intensive outpatient program) is a program which usually meets 3 times a week and some meals will be supervised and there will be therapy as well. There are also two very highly regarded programs, one at UCSD in San Diego, Ca, and one at the Center for Balanced Living in Ohio, which run for a week and help families get started refeeding. The sufferer attends with their support persons. There have been many families who found this approach to be helpful. To start with, at home, many families recommend keeping your daughter out of the kitchen. The family prepares the meals and her only job is to eat them. Sometimes 3000-4000 calories a day will be necessary, and families try to achieve a weight gain of about 2lbs a week. If she has not been eating that much and is seriously underweight, your first goal will be to start increasing her caloric intake by about 300 calories every few days until you reach the desired amount and start seeing some weight gain. Recommended checkups for Anorexia: Measurements of all vitals, as well as an orthostatic blood pressure measurement, (lying to standing) and her heart rate. Blood tests to see how her blood count, her electrolytes, including potassium and sodium, and protein, and liver, kidney and thyroid functioning. She will also need a EKG if she is very underweight, since heart damage can occur at low weights and/or if there is low potassium. You could also ask the dr. to check if she has any active areas which show self harm or any scarring. The hips can often be places where sufferers will cut themselves. But sometimes also arms and legs. I know this all sounds horrible and scary, but we are here for you and there is a wealth of lived experience on this board and kind caregivers who will answer your questions and try to support you. warmly, Kali __________________ Food=Love
Registered: 1496061527 Posts: 2,410
Reply with quote #4
a very warm welcome from Germany and what I have to say first: You have done NOTHING WRONG. I can imagine that you are devastated at the moment because all that is new for you and you don´t now what to do. You have not failed in any way. AN is a genetic metabolism disease and it is caused by dieting or over-exercising. Once those first kg are lost they cannot stop it because the malnutrishion has damaged their brain. But recovery is possible and the brain is a fantastic organ, it will recover once the weight is back and she is fully nurished again. Don´t be afraid, you can help her and she will get better again. First you need to take her to her GP. She need to be weighed and blood, bones and heart need to be checked. You must know in what state she is and how bad she is. Then you need to decide wether she needs to go IP or wether you can do refeeding at home. Are you a single parent? Can you get help from friends or family? Can you take some time off from work? For the internship: that is depending on her state and wether you can take her home for lunch for example. Her meals and snacks need to be accompanied now. You need to be with her for all meals/snacks so you can see if and what she eats. If possible, I would leave her at home to get refeeding started in that time. She can do that internship later when she is better. That is not so important in my eyes. But if it is very important in her eyes you could use it as an incentive, for example you could say "when you finished your breakfast, you can go to the internship". Do not panic. AN is a serious disease, but recovery is possible. You have found the best place to be at the moment. We all have been (or still are) in your shoes and we know what you are talking about. You are not alone. We can all help you. My d is 18 now and she was diagnosed with RAN in Januar 2017. She went IP for 3 months and we did FBT at home. She is weight restorated since summer 2017 and her brain recovery started at October 2017. She got better every months and now she is that nice and lovely girl again that we knew before AN. She has done her driving licence, is doing her final exams in school at the moment and will go to University in October. We did not imagine that all that will ever be possible last year but she is doing so well. Just to give you some hope. Recovery is possible. The way there is to get the lost weight back asap and to have her eat normal food without restricting anything any more. The nurished brain will recover and than she will be the girl that you knew before again. The brain is a wonderful organ. Come here and ask all the one million questions you have at the moment. We are here. We can help you. We have been where you are now. Tina72 __________________
d off to University now 2 years after diagnose, still doing FBT and relapse prevention
Registered: 1521482534 Posts: 109
Reply with quote #5
Hi- like the other moms, I am sorry you needed to find us, but so glad you did. I have found the support of these amazing parents Informative, uplifting, and just a safe place to go.
You might want to somehow see if the internship could be put off for a semester. At least you would have that answer, if it is determined that your daughter requires aggressive intervention (which may be more likely than not- and that doesn’t mean hospitalization- it could mean home time with FBT). I found it to be very helpful to try to always be prepared with a plan B ( and C)-it really does help alleviate some of the anxiety, and also better teaches our kids how important it is to be able to adjust ( many of our kids get somewhat rigid with AN). You could also check her degree plan and see how the change would work. With a medical diagnosis of an ED, and being open with advisors- you may be surprised how supportive the school could be- and that helps anxiety drop. Maybe she could hang on to a class ( or a couple of classes) while At home? The goal is not to put her in a situation in which she would get stressed- and since every child and family (and school) are different, you will be able to help your daughter make the most optimal plan.
As an aside- it has proven very helpful to keep our children interested in something- and make life bigger than the eating disorder.
Wishing you the best- pleAse let us know how things go.
Registered: 1525619972 Posts: 2
Reply with quote #6
Thank you so much everyone. My daughter is 19 and she will be a sophomore in college. We are in US. In Pennsylvania. Her internship is about an hour away. We would not see her for lunch. I am hoping the doctor can recommend if she goes or not. I didn’t realize this is a lifelong illness. She is five feet five and weighs 100 lbs. This seems like it happened so quick, but when I talk with her she says it has been since she was a sophomore in high school. I know she lost 30 lbs in the past year. She told me that she worked so hard for this internship and if she can’t do it, it would put her in a deep depression. She is a perfectionist. Thank you again for your answers and help. My other children, older, just don’t get it. They just yell at her to eat.
Registered: 1436500021 Posts: 1,083
Reply with quote #7
It sounds like you have some decisions to make. I want to reassure you that recovery is possible and that this does not have to be a lifelong illness. However it does require intervention and a high level of support for the ill person in the form of all meals being eaten with others for a very long time, and their weight being returned to what it previously was.
I didn’t realize this is a lifelong illness
It may not be safe for her to drive at the weight she is at right now if she is driving an hour each way to the internship. 30lbs is a large amount of weight to lose. My daughter first started having symptoms as a sophomore in HS also (and I didn't know until the end of her senior year) but it didn't worsen until she was away at college and on her own. We brought her home before the end of her first semester freshman year, and she took a year off to go into treatment and be refed to a better weight. She is back at college now and things are going much better for her. She is able to feed herself and is maintaining a weight which puts her back in her historical growth percentile. The school was very understanding and she took a medical leave of absence. She was in really intensive treatment for 6 months, and then worked with an outpatient team, in fact she still has a team. She then took two additional semesters off from her original school. She took some part time classes at a local college to get back into the swing of things while still living at home the 2nd semester so that she could have more practice feeding herself and taking lunch. (right before she went back). When she went back she was in a much better place. Taking the time off was perhaps the best thing we could have encouraged her to do and the best thing she ever did for herself. You might want to have a chat with your other kids and request that they not yell at their sister. You could give them some materials to read about the disorder, and here is a video to take a look at. Decoding Anorexia, by Carrie Arnold, might be a good book for them to read since you mention that they are older than her. It explains some of the science behind the disorder. Stress that eating disorders are not a choice and your daughter has not chosen this and that the best way to support her is to be compassionate and try to understand what she may be going through, and to treat her like they always did before. warmly, Kali __________________ Food=Love
Registered: 1284535839 Posts: 3,995
Reply with quote #8
Welcome to the forum. Sorry that you have had to find your way here. Learning about eating disorders is a very steep learning curve. You have already been pointed to some good resources. One thing you should also know is that your primary doctor may not have a lot of knowledge about eating disorders. Many doctors have little education about ED's and sometimes they can make things worse rather than better. Since you are in the US I would recommend printing out a copy of this
https://higherlogicdownload.s3.amazonaws.com/AEDWEB/05656ea0-59c9-4dd4-b832-07a3fea58f4c/UploadedImages/Learn/AED-Medical-Care-Guidelines_English_02_28_17_NEW.pdf It is available in other languages too. Try to be as familiar as you can with it and highlight parts that you think are important. The important things at the moment for you are diagnosis and medical risk assessment, then empowering you to help your D recover. It is important to treat a diagnosis of an ED as a health crisis. It needs early and immediate attention. If this means that she can't do her internship it will be distressing but her health is more important. You wouldn't let her go if she had to have surgery. __________________ D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
Registered: 1523887050 Posts: 344
Reply with quote #9
A very warm welcome but sorry you find yourself here. My D is 16 and has restrictive AN. She too is a perfectionist and is being treated as they believe this may have been the trigger for the AN.
Please understand and accept that no one is to blame re your Ds illness. It is very shocking at first and yes it may continue to be shocking for family members but you are NIT alone. You are already starting to build a support network around your family. We are here to support you even though we are strangers. There is always someone here with great advice.
In Feb our lives stopped as we knew it ... it was very difficult for my D to accept that she lost her independence but it was so very important to focus on helping her recover. She was suicidal, depressed and didn’t want to live life anymore. That was because her brain was starved of the nutrients it needed to function. Now she is weight restored and almost back to the D we knew before. THERE IS HOPE. we no longer have to watch over her and this week we relaxed the reins to enable her to be a ‘normal’ teenager no longer being supervised constantly in and out of school.
Please ask whatever questions you want. We’ve all experienced what you are going through.
Eva MUSBYs book was must for me. It saved me from learning the hard way on some occasions. An absolute must if you only have the energy to read one book...you don’t even have to read it cover to cover...just dip into the sections that are relevant to you.
Virtual love and hugs to you and your beautiful kind, intelligent D xxx
Registered: 1522207783 Posts: 4
Reply with quote #10
I have read this site for a while now, but your post motivated me to post for the first time. I am so sorry to hear that your daughter has had this awful diagnosis. I wanted to throw my two cents in about choices you need to make in the short run and maybe use the mistakes my family made to help inform your choices. Our daughter is twenty, should have just finished her her junior year, but took medical leave part-way through this semester to go to residential treatment (Laureate in Tulsa, OK, hundreds of miles away from where we live, and just as far from the city where she goes to school). By the time she is discharged she will be there for about four months. I don't say this to scare you, but to help you realize recovery takes time - something we failed to realize when our daughter had her first episodes and her best chance for full recovery. She is doing great there. She is weight restored to ten pounds more than she has ever weighed which is so encouraging! And we expect her to be in their PHP for another four weeks, then four weeks of their (free for people that have been through their res program) independent living program. The staff there were eager to have the growth trend info I was able to provide to them and adjust her weight ranges to what I thought was needed (5# more than their original plan - she is now in the range I suggested). I have been very pleased with the communication I have received and their family week program is excellent. Where we went wrong in the past....being too eager to get our daughter out of full-time treatment and back to her "normal life". Like many girls with this diagnosis, she was very driven and highly accomplished - we wanted her to experience the benefits of her hard work! I won't bore you with the details of her treatment experiences, but she was in residential treatment during her senior year (Renfrew in Philadelphia, near home). We were happy she was discharged after four weeks - she had AP classes to complete and prom and a summer job...all so much less important than her physical and mental health. But we chose wrong.... She ended up with a medical hospitalization at the end of her sophomore year (a semester where she had straight As in a challenging science program - don't let good grades fool you). We were eager for her to be discharged to started the great summer job in her field! We were so wrong... She worked the job, went to ERC for IOP at night after work. Never gained enough, never stopped ED behaviors - we didn't know better (she was 400 miles away from home). But now we do. She "white knuckled" it through first semester junior year, but ended up in the hospital a few weeks into second semester. Then I found this website. Our eyes were opened to things we hadn't heard when she was treated in high school. And we hadn't heard from the team she was seeing in college (at a well known childrens hospital - they are awesome, but couldn't talk to me because she hadn't given authorization. They told her what they thought she needed to do, but she was not in a place to make sound decisions for herself. She was skipping appointments, etc. She has signed consents now, so we talk to her Laureate team and her docs at the hospital near her school) They recommended Laureate and it seems like a great fit for her so far. My bottom line: take this seriously, recovery is possible but it takes time. We, like our children, can get so obsessed about the present. This semester, this job, this trip...are so much less important than her long term health. At this point we are considering having our daughter stay home for fall semester and take classes at a nearby state university so we can help her continued recovery and return to her regular school spring semester if she continues to do well. I would rather have her graduate in good heath at 24, than hanging on by a thread at 22. Inpatient/res is not the only option. As you will read here, many families re-feed at home with the help of therapists and dieticians trained in Family Based Therapy. Others have spoken to that with much more expertise than I could. Sorry for the long post. I encourage you to check in regularly. The regular posters are so encouraging and informative. Best regards to you and your family.
Registered: 1436500021 Posts: 1,083
Reply with quote #11
Since you mention that you are in Pennsylvania, there is a very well respected eating disorders dr. at CHOP, in Philadelphia, named Dr. Rebecca Peebles. If you want to take your daughter for a consultation with an ED specialist, that might be a good place to start. warmly, Kali __________________ Food=Love