Registered: 1504571250 Posts: 1
Reply with quote #1
My 13 year old Daughter was diagnosed with an ED about two weeks ago. I thought I had cought it fairly early but she was hospitalized the same day as her diagnosis. Her BMI and weight we're on the low end but nothing alarming however her heart was in really bad shape. I have been going through stages of emotions these past two weeks. She comes home tomorrow and I am very nervous. I have read probably to much information at this point. How do we find face to face caregiving support groups? I am in California.
Registered: 1385153142 Posts: 1,135
Reply with quote #2
I'm so sorry you are going through this. It's pretty much a parent's worst nightmare. Can you tell us a bit about her hospitalization? You don't have to tell us exactly where she was if you don't want, but you could tell us about the treatment she has been given and how that went. And what have her team told you will happen after discharge? What support do you have? What plan is in place? And maybe someone in Calif will come along soon. xoOTM __________________ D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old.
Registered: 1396016102 Posts: 4,548
Reply with quote #3
Hi tweetysimp - so sorry you needed to join us here. This forum is really the best place, though, for information and support.
Although the basic idea SOUNDS simple enough - your d needs to regain all the weight she has lost - making that happen can be a real challenge. What I learned here was that the best plan is to pack in the calories as densely as you can so that the serving sizes are somewhat manageable. The best way to do that is by adding canola oil, butter and cream wherever you can. I was surprised to learn that canola oil disappears into everything from yogurt and soup to smoothies and rice if you stir it in vigorously. The additional lipids help with brain healing, too, because the brain is made up largely of fat. What helped me most was one of the videos by forum member Eva Musby: Please feel free to ask all the questions you like. xx -Torie __________________ " We are angels of hope, of healing, and of light. Darkness flees from us." -YP ♡
Registered: 1284535839 Posts: 3,215
Reply with quote #4
Welcome. The start of the journey is scary and overwhelming. Please feel free to ask lots of questions, how can we support you? I found it helpful to do loads of reading. There is lots of information on the FEAST site, along with tips and tricks on the Hall of Fame.
__________________ 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: 1268143852 Posts: 1,381
Reply with quote #5
Dear tweetysimp, So sorry to hear you're going through all of this. The Good News, however, is that you will find this forum so very, very supportive. Just knowing that there are other families that have been through this can be a great help, especially those families that have come out the other end successfully (like us). I was in your position back in February 2010. My son had just been hospitalised for Bradycardia - his pulse was registering at 29bpm, so I know how terrifying this can be. I remember weeping: "He's my only child and he only has one heart!!" It was horrendous, it really was. Here on the forum we have members from across the world (I'm in the UK), so hopefully you'll be able to find some who are local to you. Even if you can't, then this forum is such a friendly and supportive place that it does a very good job being the 'next best thing'! And, because of the worldwide presence, there will usually be someone on the forum to offer support, even if you need it in the middle of the night (as happened to us on several occasions...) The advice from other parents above is excellent and Eva Musby's videos are brilliant. What they do is to show you how to overcome what can seem like an impossible task - feeding your child. I used to find it so very hard to grasp: here we were, surrounded by supermarkets, restaurants, fast food outlets, etc, yet my son was starving because he simply refused to eat anything I gave him. I wish I'd had Eva's videos back then. You'll find a ton of information on the main FEAST website but if you have any questions, concerns, worries or just want to vent - we are here!! I also write a blog which I began a year after I joined this forum and a year into my son's treatment (see links below). There might be something helpful on there as it's mainly geared towards helping other parents so they can fast-track themselves through the learning curve of eating disorders. If you do feel it might help, then I suggest starting at the beginning in 2011 (you can download PDFs to make this easier to scroll through - see below). Do let us know how you're getting on, won't you? Bev xx __________________ Bev Mattocks, mother of 23-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
Registered: 1454901521 Posts: 168
Reply with quote #6
Hi, sorry to heat about your d, but glad you found this forum. My d was also 2 weeks ip for her heart. When she was discharged, she found it difficult to eat. Here is what I wished I knew.
Have a mealplan and put it on the fridge. It should be very detailed. Listing the times of each meal and snack (breakfast-7am, morning tea-10am, lunch-12pm, afternoon tea -3pm, dinner -6pm and supper -9pm for example) as well as what you're going to serve at each meal. Try and keep it consistent.
When serving a meal, limit the time to 30min (as a side note, many parents here had no limit and their child had to sit there until everything was eaten, see what works for you). When a meal is complete, you can give an incentive (I used tokens which were swapped for iTunes cards to play games). If the meal wasn't eaten, no fun stuff, no tv, no games, etc. I'd sent her to bed with a book to conserve energy. At the beginning I was very lenient, she got the token when she ate more than the previous day, so we slowly build up until after about two months or so she was following the whole mealplan.
Be calm, even if you have to fake it. One day my d asked me if I would be upset if she tipped her ensure on herself. I told her, no, I would just put her in the shower and get another ensure. So she threw the ensure over me. With my calmest voice I said:"See, I'm not upset, I'm just going to take a quick shower and then get you another ensure". I was livid inside, but didn't show it. Takes lot of practice, though and plenty of times I blew up. Try and seperate the illness from your d, pretend it's cancer. Your d didn't choose to become ill.
Find some time for yourself every day to scream in your pillow and more importantly find time away from this illness. My husband and I had date night every evening where we would spend time together and talk about everything except the eating disorder.
Eva Musby has a brilliant book full of tips and suggestions about how to get the food in:"Anorexia and other Eating Disorders: how to help your child eat well and be well"
Sending you lots of best wishes __________________ 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. Challenging fear foods and behaviours now.
Registered: 1435435970 Posts: 269
Reply with quote #7
Welcome to the best place on earth for support and info about ED. Your d is lucky to be hospitalized so that she can be safe, given her compromised heart. People here have reported over and over that BMI is NOT a good measure of health for a teen and especially an ED teen. Some people have had kids with fine BMIs, like even 20+, and yet the child was severely ill.
In any case, the most important thing is, as everyone here says, eating and feeding extremely high-calorie food. I found a few support groups when I was in the thick of it, but honestly they met something like once a month, 6-8pm (dinnertime!!) and I ended up using this board for my support (under another name). Also it is important to inform yourself thoroughly because some therapists and even doctors do NOT know the most up-to-date treatment. Which is food. Anyone who tells you there are "underlying causes" that need to be worked out, or that "it's about control" is sending you down an ineffective, outdated path.
Registered: 1396918777 Posts: 594
Reply with quote #8
Welcome to the group, though so sorry that you need to be here. Please ask lots of questions or come here just to vent -- we all get it and make no judgements. You are in California so have you looked into the UCSD one week family intensive program? We did this program after 2 months of PHP (partial hospitalization program, about 8 hours a day but not overnight) and another month of IOP (Intensive outpatient program, 2 hours a day for 3 days a week only). If you are going to follow the Maudsley Method (which is also known as Life stops until you eat) where you basically plate all three meals and snacks everyday and your D's job is just to eat the food given, then I highly recommend that you look into this program. It was the game changer for our family. You leave with a contract for eating and life that really helps define clear cut rules and outcomes for not following the rules. They also offer wonderful parent support while you are there and email addresses to keep in contact with your support group.
Hang in there!
Registered: 1487511003 Posts: 31
Reply with quote #9
Hi, sorry that you have to be here, but like everyone said this forum is a huge help. Where in California are you if you don't mind me asking? If in Los Angeles, I could recommend a good FBT therapist, that can help with refeeding.
Registered: 1452437794 Posts: 1,752
Reply with quote #10
This presentation is well worth a look __________________ Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) 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: 1268143852 Posts: 1,381
Reply with quote #11
I'm mega anti-BMI as an indicator of how serious or otherwise an eating disorder is. It was developed nearly 200 years ago by an astronomer, mathematician, statistician and sociologist (note, no mention of medical there) and does not measure overall fat or lean tissue (muscle) content. Males can have far higher BMIs prior to developing an ED (sports like rugby, etc) and some females too which means that although, 'on paper', their BMI looks OK, an ED can be raging. It has to be 'state not weight' rather than such an outdated and inflexible formula like BMI.
__________________ Bev Mattocks, mother of 23-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.