Registered: 1315362758 Posts: 158
Reply with quote #26
Its been a year since I was last on this forum and three years since my D was hospitalised with AN. I have come to give a small word of encouragement for those of you who are in the murky depths of this hideaous disease. When I joined this forum out of desperation two years ago I was terrified that my D would never get better and I would never see again the wonderful child that my D had been before AN took over. My D was discharged from hospital about 5kg too light and she did not thrive at home. We struggled with every bite. (You know what that is like!). Therapy was not much help as AN had stolen her voice and she spoke no words in 6 months of therapy. In desperation I found this forum and from that moment one we took positive steps towards recovery. The very wise advice was to put on more weight and that we did, another 5 kg and we started to see changes in her state of mind. That was 2 years ago. Today my wonderful D has just started her final year in high scool and spent the last school holidays in Vietnam with the school. No supervision at all from any adult as far as her eating went. She thrived! She knows she needs to have a plan to stay well and stick to it. She never wants to get sick again. We remain ever vigilant. Take heart, your child can recover. It will take time and anguish and hard work but it will happen. Visit the forum often, it saved my daughter. My thanks to the many mentors and moderators who helped us on our journey.XXXXX
Registered: 1258464327 Posts: 2
Reply with quote #27
My daughter was diagnosed at age 12 with anorexia, hospitalized 10 times for extensive lengthy stays. My children and I relocated to the treatment state on one occasion due to length of stay. She lost 4 years of high school. I was forced to sue the school to get a fifth year so she could learn in a conventional setting not with a feeding tube an a tutor.
She did graduation, tested into a very prestigious college. Attended one year and was unable to deal with anxiety, depression and ed. She came home for one year and slept 20 hours a day became bulimic gained
an excessive amount if weight in a very short period of time.
I would not have believed this horrific transformation had I not witnessed my daughter fighting her internal demons.
After a 2 year fight with insurance and a lot if convincing, my daughter had TMS for 6 weeks and 6 consecutive days and I am thrilled to report she is doing extraordinary .
At 21 she got her license, a job, a boyfriend
And has returned to school. She lost most of the excessive weight and is living a life.
9 years later we are making sense of this horrendous experience which robbed my daughters and son of things too numerous to mention.
Registered: 1233811254 Posts: 1,216
Reply with quote #28
I’ve been wanting to post an update on my daughter who is now off to university . . . but I’ll back up a bit for those who don’t know our story.
We realized M was ill in January of 2009 (middle of her 8 th grade year when she was 13). We had noticed some strange behavior around food but had chalked it up to her sensory integration disorder and thinking that maybe it was returning due to puberty. She cried at Red Robin one night when her bunless burger was placed in front of her, she cried a few days later when I got her a Cinnabon. She came to me the day after the RR incident and told me there was something wrong with her, that she felt guilty every time she ate. She had no idea she had anorexia and it took me a few weeks to realize what was going on. She had taken health class in 7 th grade and had decided she wanted to eat “healthy” and took up long distance running. I was one of the lucky ones as when I googled eating disorders one of the first things to pop up was a review for Laura Collin’s book, Eating With Your Anorexic. That led me to Maudsley Parents, FEAST and to Help Your Teenager Beat an Eating Disorder by Lock and Le Grange. When I finally took her to our pediatrician on Feb. 4 I had L&L in my hand and knew exactly how we needed to treat our daughter. At my insistence we were referred to our children’s hospital for outpatient medical treatment and we were able to find an FBT therapist. We travelled 2 hours each way every week for medical and therapy appointments. Refeeding was hard. The hardest thing I’ve ever done. M was in no way compliant and resisted every snack and every meal for months. She was w/r in less than 10 weeks, a gain of 24 #s, but it took her brain almost 2 years to heal. During those first 6 months we had to call 911 three times for suicide attempts, running away and to help us transport her to the hospital when she tried to jump off our roof. She spent 5 days in the IPU at our children’s hospital after that attempt.
We plugged along for 3.5 more years, with her never fully gaining independence with her eating.
It was a very slow, long road. During this time we started wondering about Asperger’s and received a diagnosis of Pervasive Developmental Disorder in January 2013 just before her 18 th birthday. For her this is characterized by rigid, black-and-white thinking, communication problems, working memory deficits, processing deficits, some social awkwardness as well as other things. The final straw was that it took her 2 full years to learn how to drive.
As the time for college grew nearer we told her she could not go away to college until she had maintained her weight on her own for a year.
It was looking like she would have to stay home and attend our local community college as her college of choice was 7 hours away. Fortunately a wise friend (YP!) suggested we look at local liberal arts colleges where she could live on campus but still be close to home. She had three great choices that all kept her within 1-1.5 hours from home. She chose the closest! (One hour door-to-door, no ferry ride required!)
We found a therapist (again, an hour away) who specializing in spectrum disorders and has knowledge of eating disorders.
She helped us draw up a contract for college. In September we moved her to campus and she is thriving! The first couple of weeks were difficult for her and we received many tearful texts and phone calls saying she’d made the wrong decision, she didn’t like it there, she’d never make any friends, etc. We listened but insisted that she work through it. Fast forward to today and she is best friends with her roommate, she has joined crew and is the coxswain, she has tried swing dancing, she participates in Intervarsity Christian Fellowship, volunteers at a local middle school, has a thriving social life and is doing very well in all her courses. But best of all, she has maintained her weight completely on her own since September! My prediction (and our therapist’s) was that she would lose a few pounds when she got there but be able to self-correct. She actually gained 2-3 pounds immediately and has maintained her weight there. I don’t think her eating habits are that great, but she’s doing so well and has never had a dip in weight.
She still cannot talk about her eating disorder and sometimes insists that she didn’t even have one (
maybe I was just malnourished Mom).
I cannot emphasize enough that full w/r is crucial and that going away to university is not possible until they can maintain their weight and health on their own.
Use whatever leverage you have. Even though M earned herself a full-ride and we are not paying the bill we have helped her a lot with scholarship applications and by filling out the FAFSA. She knows I won’t help her at all if she can’t maintain her health.
I credit this forum with our daughter’s recovery.
I would not have known how to help her w/o help from all the wise parents on here. Neither our doctor nor our therapist were able to give us any practical help on refeeding a starving child and they were all quite alarmed at her behaviors. I knew though by reading the forum that what we were experiencing was “normal.”
I have attached her contract.
M's_College_Contract.docx (21.26 KB, 288 views)
__________________ MJ in the Great Pacific NW
Registered: 1304986366 Posts: 838
Reply with quote #29
We just dropped my almost 21 y.o. daughter at the airport for a 2 week trip to Israel. Last night while packing she looked at me with her rosy, glowing cheeks and soft, feminine body and said, "mom, I can't believe that I am healthy and can do this thing that normal people do…I'm normal!" And she is! I understand that relapse is always a possibility, but right now she eats freely, loves her curves and feels happy. Who woulda thunk it!
She was diagnosed with restrictive anorexia just before her 18th birthday. Over the last three years we have embarked on refeeding/Maudsley/FBT type treatment with varying levels of support. It's been hard; there have been periods of despondency, suicidality, body dysmorphia, poor managment on our part…you all know the struggles. She tried to go away to college, but couldn't manage herself. She came home to live with us 1 1/2 years ago - weight restoration, relapse, weight restoration - we kept at it. With time, food and DBT therapy, relative normality has won out over dysfunction. I just want to let everyone who is in the trenches know that your efforts will pay off. My daughter relapsed last September (2013) and it wasn't until December that I realized that, once again, I needed to feed her every meal and snack. I thought I'd go crazy…how could I do this again. But I did it and it has paid off! I can't explain how we transitioned from me feeding her every meal, to becoming more of a cheerleader. It happened kind of organically. Of course, sometimes I still worry, and my prompts for her to eat annoy her, but I believe that in her heart she knows that I do it out of love. Even though upon diagnosis I was warned that healing takes time, we tried to rush things. I wish that I knew then what I know now…that she would develop into an adult more slowly than her peers. That we would have to SLOW things down, keep life simple and take our time. Others might say that you are babying your child, forcing them into dependency, etc…but ultimately they will leave the nest, without being pushed, when they are ready and able. __________________ Papyrus Philadelphia area
Registered: 1354909510 Posts: 330
Reply with quote #30
Also posted in a separate thread: http://www.aroundthedinnertable.org/post/a-happy-update-6967857?pid=1283390100#post1283390100 I haven't posted here in a very long time, and I am happy to report that it is because life is normal in our home. (Or as close to normal as one can come with 3 teenagers in the house.) My D was diagnosed with AN and severe depression in Dec 2012 at age 14. She spent several weeks IP, followed by a PHP program. We began aggressive refeeding from the day she was discharged and she was WR within a few months. She was hospitalized for depression in March and again in November of 2013. Now it is July 2014, and my daughter eats easily and normally, maintains a healthy weight, is happy and participates eagerly in normal teen activities. She is about 45 lbs above her lowest weight and LOVES the way she looks in a bikini. Life is really good at the moment. How did we get here? A lot of luck, and a lot of hard work. We were very fortunate that my D was diagnosed early. I think this made a huge difference as we were trying to undo months of restrictive behaviors rather than years. We were also fortunate that my husband discovered FBT right from the start. We didn't have a FBT support team available, but we were empowered to take over the feeding process and didn't waste any time with questionable therapies. Knowing from the beginning that food was medicine was vitally important. Also important was the fact that my husband and I were on the same page from the beginning. We took different roles during refeeding but we were a team. That helped make up for the fact that we didn't have an FBT team to work with. Once my D was WR, she still suffered from severe depression. We spent months trying different anti-depressants and changed doctors twice before we found a combination of drugs that worked and a doctor we felt good about. We also pulled my D out of school (at her request) and began a hybrid school/homeschool program. The difference was profound. At this point, AN is just a line in her medical history. It really has no part in our lives. I keep an eye on her eating habits and her weight, and I will definitely step up the vigilance when she transitions to college. When we were in the thick of it, it seemed impossible to believe that things would ever get better. Don't give up. As agonizing as it is, as much as they deny it, your child is desperate for your help. Coming out on the other side really does feels like a miracle. __________________ __________________ Daughter dx Dec 2012 at age 14 with AN and depression. Currently 18, fully WR, without any ED behaviors and managing life and college with minimal support.
Registered: 1353936141 Posts: 20
Reply with quote #31
As someone whose Daughter was diagnosed with AN nearly 6 years ago I have observed and read many Topics and posts on this forum but never previously contributed! To precis her situation our D was taken out of school in her GCSE year and at her lowest point her BMI dropped to just over 12! Since then, to keep it brief when she hasn't been at school and now University (!) she has been in hospital (Day Treatment!). Nearly 18 months ago she was sent home from University having lost 8kg in 6 weeks, and we were told by her Consultant that we should prepare ourselves "for the fact she may never recover from the illness". After another 11 months of Day Treatment, 8am - 6 pm five days a week, she graduated from her Treatment! After much thought and discussion she returned to University earlier this year to complete her second year with a third year still to come and here is the good news.......... She is thriving, maintaining her weight, has a boyfriend, and is so busy socialising it is untrue. Most of all though she is happy and smiling - something she hasn't been for 6 years!! My wife and I would never and probably will never ever presume that she is fully better and has beaten this horrific illness, but at this moment in time she is learning how to deal with it which at the moment is all any one of us on here can ever ask. She is however happy again and smiling and laughing and just as importantly talking to us, things we honestly wondered if we would ever see and hear again! I just wanted to let you all know that there is hope out there for these poor girls (and boys!)! Believe me we have been through some of the darkest possible times with her but in hopefully a very simple way I just wanted to let you all know that despite what you may be going through and be thinking the worst, there is hope out there and there is a light at the end of the what sometimes will appear to be the darkest tunnel you have ever been through! Thank you for indulging me!
Registered: 1385153142 Posts: 1,118
Reply with quote #32
Guess who got her period? Never has a menstrual cycle been more celebrated outside of a tribal culture or ATDT!
We started FBT on 18 November 2013 and it took 238 days to get the 10kg on her that her body needed. Along the way we battled not only her ED, but also another family who would harbour her for days on end and buy her interstate airline tickets.
We chased her running down the streets of our neighbourhood or shadowed her as she wandered slowly, barefoot. We waited worried when she disappeared into the city. We herded her with our neighbour’s help. We drove 6,500km between her FBT and our home.
We were bruised, cut, threatened, spat on, stomped on, screamed at and bitten. We had our belongings smashed, our bed linens torn, our dishes tossed. We had flashing lights in our driveway more than once.
She hid food. She poured yogurt on the floor and drew patterns in it. She cried, begged, whimpered and wailed. She lied and manipulated. She refused to speak to us. She hoarded fatal medications.
We lost Thanksgiving, Christmas, Mothers’ Day, birthdays, and annual trips. We took time off or scaled back our work. I stopped volunteering.
But always there was the food. We fed her. Again and again we would pack, prepare, enrich, supplement, supervise, organise, deliver and provide food. I went through endless volumes of canola oil and nuts. I made maybe 600 servings of my 300 cal lattes.
We refused to give up and slowly, so slowly we almost missed it, she started to get better. She held my hand, hugged me and told me she loved me. She began to rummage and graze in the pantry before dinner. She ate without questions or hesitation. She ate potato chips, donuts and lemon meringue pie.
She began to go out because it was fun and tell me all the ‘deets’ when she got home. She would ask for extra food because she knew she’d be out late. She has started seeing a really nice boy. She’s learning to drive a stick shift and including me in her plans. She likes to hang around the house with us.
She said, 'Sorry.' and 'Thank you.' for all that has happened.
So now we know for sure that it wasn’t our D doing all those things. It was that evil, life-sucking b@3+ard ED. He still doesn’t want D to eat a few things that she used to like, but I am confident we can help her sort that out.
In her first two weeks of phase 2 she put on .7kg. She officially graduated FBT in June 2015. And right now we really do feel a sense of blissful relief. We are so proud of her and happy to have her back. We are talking about university and travel.
Thank you for all your support. Reading your stories and questions and having you offer us advice was invaluable. We couldn’t have done it without you. Really.
PS She posted her recovery story on YouTube here.
__________________ D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old.
Registered: 1386370811 Posts: 303
Reply with quote #33
Also in a separate thread: http://www.aroundthedinnertable.org/post/this-gets-better-7038853?pid=1283925803#post1283925803
My d is doing great. Really great. Better than great, actually. She has recently turned 18, and is enjoying her last few days of summer. She had a great birthday- melting pot dinner with friends, followed by a family dinner at home the next day. All normal teenage activities- makes my heart sing!! She has been at her school a lot in the past few weeks working at orientations, new student socials, etc. She is very active in student government, so she has really enjoyed these activities. I am being stopped by people all over the city who tell me how wonderful and helpful she is!! She's ready for senior year, and has already been accepted at a university. Though it's not her first choice, she is understandably very excited!! Things with her friends are great. She is busy and happy. Lots of water activities- it will be interesting to see what they do when the weather cools off! Her ED hasn't been seen in months. She says it doesn't bother her anymore, and that her eating disorder is "just something that happened." She is moving on with her life. She said to me, "I don't have time to be sick. I have places to go and people to see!" I know to continue watching her, of course. However, she eats so normally that we are allowing more independence. Just last night, she went to a pool party with friends. Her best friend lives in our neighborhood, so they had car pooled there. They stopped at McDonalds on the way home to get ice cream. It's normal teenage eating, which is amazing. She eats such a huge variety of things and there are no "patterns"- it's just what she feels like. Her weight stays stable. She has her period on the same cycle that she had pre- ED. She is slightly above her growth curve. She looks strong and beautiful. She still sees her therapist once a week, and her doctor usually about once a month. Because depression, anxiety, and PTSD are pre/ co morbids for her, she knows that she may be in therapy and possibly taking medication for a long time. She respects the fact that she will have to watch her mood in the long term, and she is totally okay with that. She calls it, "her thing." She likes to say, "everyone has a thing, this is mine!" She is doing so well. We are so proud. She had a "shift" in her thinking earlier this summer. She lost a friend to ED, which really scared her and made her recognize that she is fighting for her life. She used her grief as a motivator. I know that sounds cliche, but it is true. It was a push for her. She is such an amazing kid. Gregarious, funny, so so smart, confident, and happy happy happy. I know I'm bragging on her because I'm her mom, but she is really special. She loves everyone and wants to make sure that everyone she meets has a good day. I have to strive to be more like her sometimes!! I don't know how much I will be posting from now on, as long as things go well. She has started to separate herself from her ED, and it is time for me to do the same. I will still read posts and comment when I have experienced something similar, but I think I should start to build my life away from Hanna's disease. I know that this community is always here for me and all of the wonderful ED- fighting parents out there. If (heaven forbid), she were to get sick again, I know where to find help. For those of you in the trenches, keep fighting! Love your children, hate ED. This gets better. My d is happy and healthy now. No sign of ED! Your children will all get there too! Thank you all, sincerely, for the support and love in the past several months. It has been so so so appreciated. Without you all, I wouldn't have known where to start. Thank you all so so very much. All of you are in my prayers (as well as the prayers of my family). Keep fighting everyone- love you all! __________________ 19 y/o d, fully recovered from AN, I deleted most of my old posts to respect her privacy
Registered: 1372382738 Posts: 156
Reply with quote #34
I have been gone from this forum for 6 months or so... all because our d has been doing wonderfully well. She is starting her Senior Year in HS next week; with virtually no lingering traces of the Severe RAN that had her hospitalized all of last summer. As others have said - she is moving on with her life! She has a job (in a restaurant!) has maintained her weight for 8 months, eats spontaneously and independently, hanging with her friends, and is making plans for college plans. All things that seemed so out of reach a year ago.
This forum was a critical ingredient for our d's recovery -- because without all of YOU, I would not have felt empowered to: Take a stand opposing her her well-meaning dr. who (as it turned out) didn't know how to treat our d; prepare and feed her 5000 calories a day - every day for as long as it took; and most importantly, it gave me the assurance I needed to stand up to the frickin' ED itself; I became a brick wall against my d's tears and fears... truly, the hardest part of the journey. As anyone who has been on this forum knows, there is no one 'magic' recipe for success against ED... my heart goes out to all sufferers and their families. For myself, now that I have a little breathing room from the drama and trauma of the past 15 months or so (including other dramas with elderly parents and losing a job)... it may be time to channel some of my energy into ED advocacy work. I'm planning on going to the NEDA conference in October... perhaps will see some of you there? __________________ 17 yr old d dx RAN in June 2013. W/R in Jan. 2014; as of May 2014- independently and doing well. Read more at Paula-Ponders.com
Registered: 1386591731 Posts: 4
Reply with quote #35
Our story started when we lived abroad, and the diet of the whole family was limited in dairy and meat, and our D was into 'a healthy diet', looking back she would have been about 14. At 15 we were concerned as she had lost some weight and she spent a year going to a dietician. Just after her 17th Birthday we came back to the UK and she was diagnosed with RAN.
Initially she was treated in a paediatric service which used the Maudsley approach, and we were involved closely In her therapy. However she continued to lose weight, and just before she turned 18 was transferred to an adult service. At this point she was no longer attending school, and we found the change from being involved in treatment to her being an 'adult' very frustrating and confusing. Anyway a year after diagnosis despite treatment and our attemps to re-feed at home her BMI was continuing to drop, and so she had a break from treatment. The next few months were some of the hardest. Meals were tough: coaxing, pushing, dealing with verbal abuse, restraining her when she would start hitting her head on the wall, and then it progressed to controlling what the rest of the family was eating, and so the fights weren't just about what she was eating, but what we were eating too. And there was always the next meal. Her BMI continued to drop and because she was an 'adult' she had to be the one to call the consultant to ask to be admitted, we were lucky that at this stage she was feeling desperate, because I guess the alternative would be for her to have been sectioned under the Mental Health Act. So back to daily outpatient treatment, and still she lost weight.
Finally we had a meeting with her consultant, nurses and therapists, and of course D- it was a horrible occasion, but at last she was admitted as an inpatient December 2013. And this is when the tide turned. It seemed that finally her ED had been backed into a corner, and with everyone united it couldn't creep between the cracks. D said it was like getting to a fork in the road, and thankfully on this occasion she chose recovery. Over the 20 months of her treatment it felt like every so often she would go up to the edge of recovery and dip her toe in and decide the water was too cold, but this time it was as if she chose to dive in. Despite having her head in a good place for WR, it took her 3months to achieve this as an inpatient. We are nearly a year on now, her weight is good, she has a full time job and is living independently, and loving life, and food. We can look forward to Christmas, and sitting around the table as a family...it is wonderful.
There are a few reasons for writing my daughter's story. Firstly, I know how important it was for me to hear that people do get better. Secondly, this is a slightly unusual recovery story, but recovery did happen, so when things get really tough you might be closer than you think, hold on. Thirdly, Re feeding is difficult, I don't think I was terrible at it looking back, my daughter over many years had become very subtle in her ability to cover her true intake, but it is tough, try and find support.
The last part of this process for me is learning to let go of the anxiety and stress of the last couple of years and learning to trust that my daughter will look after herself. It is so exciting to rediscover my beautiful capable daughter and to look forward to her future.
__________________ Always hope x
Registered: 1394795622 Posts: 5
Reply with quote #36
Hi, eventually it seems appropriate to post a story in this section, like many others I hope I am not being pre-mature but right now my daughter is so much better than she has been for the last 22 months or so. During our worst days I always took solace in reading the stories posted in this section so i hope I can provide some hope to others.
My wife, "Irish Jan", has posted on our story a number of times when times were tougher than they are right now. Background and start: My D was a little on the heavy side in 2012, at age 12 but otherwise a great girl who maybe took herself a little seriously, but a lovely thoughtful girl who was intellignet and clever and had good friends in school. I believe that she became a bit self concious of her weight around the second half of 2012 but did not take any actions. In November of 2012 she was getting teeth-braces fitted at the dentist and he gave her a talk about eating sticky sweets with braces etc. At the time we didn't pay any heed to this. Her first step was to stop eating sweets. Again as she was a little overweight we carried on without any cause for concern. In fact I even encouraged her to take some exercise and she did some running starting in around Jan 2013. She started exercising, she used to do limited sports but had stopped altogether in previously 6-12 months. The exercise was in small amounts and nothing that caused us concern. By March our D had lost some weight and we were begining to notice that she was getting very rigid on eating "healthy" foods and she was exercising more than before but again nothing too alarming, although she was becoming rigid about foods. One month later we thought things were not so good but she still was in a very healthy weight range, however we decided to take her to our doctor as her periods had stopped. Our doctor (very luckily for us), is an expert in eating dicorders and recognised immediately that we had a problem, -although our D was in a very healthy weight range, she was already restricting significantly and it was clear that she had a problem. We spent May and June 2013 trying to encourage her to eat in a fairly amateurish way, we mostly did not achieve much. She may have increased her intake a little but she drastically increased her levels of exercise, unfortunately we were not as focussed on the exercise and she continued to lose weight. In retrospect she was in full blown RAN mode at that time. First Hospitalisation: Eventually our doctor advised that we needed to take her to hospital if she would not stop the exercise. She refused and we took her to hospital. She was kept in as her heart rate was low, however she managed to escape the first night. We let her graduate from her primary school the next morning on the basis that she would go back again that afternoon. She complied, she was kept in for a few days but totally refused to eat until a wonderful pediatrician gave her a good scare about odema and threatened to tube feed her if she didn't eat. She ate and recovered a little. She was very on edge the whole time and was constantly trying to escape and was unco-operative in general. The hospital advised that she be transferred to teens psychiatric unit in Dublin (our home city) which would look after her. We persuaded her that it would be a much better environment and she went. She was very unhappy there, but at the start complied with the eating, however as she was not allowed to exercise, she insisted on not sleeping and tried to exercise whenever not supervised. She pleaded with us to be taken out of the unit and whenever we visited all she wanted was exercise. After 2 weeks she started to kick back against the regime and they lost control of her, eventually she discovered that they really were not able to make her eat and she stopped eating. She Knew that they would not be able to keep her once she became medically unwell and she planned to be sent back to the children's hospital where she would be able to escape as it was not a secure hospital. Eventually the Psychiatric unit felt they could do no more with her and suggested that we try at home. She was first returned to the children's hospital where she was again medically stabilised and then discharged to us. We pleaded that she even be discharged from the Pyschiatric unit as a trial rather than permanently but they basically wanted to get rid of her as they were not able to deal with her. First homecoming: Our D was genuinely traumatised by her hospitalisation. She had spent very little time out of the family home and to be "locked up" away from her family was very difficult for her. So she was glad to be home.We tried to help her but were still naieve and ineffectual. She tried to some extent to manage at home in that she tried to eat enough but insisted on doing a very vigourous exercise regime at the same time. She more or less held her weight for 2 weeks but then she went very rapidly downhill. She wanted to exercise all day long and ate very little. She did as she would get very agressive and violent if anyone tried to prevent her. We again tried to get her into care but the Pyschiatric unit did not want her. In consultation with our family doctor we took her into A&E. She was given an all clear! For last 2 weeks in August she was only a little under a healthy weight but was spending about 10 hours a day exercising and eating very little so her descent was rapid. Second Hospitalisation: 2-3 days after the first visit to A&E she was exhausted and we again took her into A&E again in the children's hospital. This time we needed the Gardai (Irish Police) to ensure that she would go. When she was detained and she tried to run and acted very violently and had to be sedated. For about a week she refused to eat acted violently to anyone who tried to help although she took iv fluids. They tried to forcibly put in an NG tube but did not suceed. It was around this time Sep 2013 that we started posting on this forum and got some great advice. Thanks to all who helped, especially the late and great Charlotte UK who was a wonderful coach and advisor at a time in her own life when she was obviously herself going through her own very difficult time. The children's hospital had not dealt with many extreme cases of AN before and were a little afriad of our D who was physically very agressive and abusive at this time and also was threatening to sue anyone who touched her when she got older. The hospital decided that she needed to be sedated for NG feeding. They were unsure if they could do this without making her a ward of court. This of course delayed the refeeding and as parents we were very distressed as at this stage she was very thin she was still not eating 7 days into hospitalisation. Eventually they were confident that they could do it from a legal point of view without her being made a ward of court as she was still only 13 years of age and proceeded. She had a heavy cocktail of drugs and the refeeding began in the ICU section. Progress was slow at first and it was awful to see our D in such a helpless state but also great to see her calm with calories going in. She always hated hospitals so once she started to gain weight she then started mostly co-operating and ate the 3 meals and 3 snacks a day. She mostly co-operated with eating but her state of mind was "I am only doing this to get out of hospital when I will exercise again" She also occassionally made a break for it during her stay in hospital but never managed to escape. She was supervised 24/7. She made rapid progress from a physical point of view but really her mind was in a very dark place. She was weight restored by End of October 2013 and she had done some trial trips home. She mostly co-operated as she said that she would co-operate until she was discharged. On some trips home during her hospitalisation she ran away and we had to restrain her to get her back to hospital. The team in our Children's hospital also took some advice from Great Ormond St Hospital in London and we were told that we could do an assessment to see if she would be suitable to go into their care. We embarked on the assessment. We got her to GOSH but she ran away from GOSH and we retrieved her with the help of the London Police. We got her home but needed the Airport police to get her off the plane and the regular Gardai to get her back to hospital. (Much violence). One of the worst days of my life. Things progressed and eventually at Halloween we took her home! Homecoming: This time we knew a lot more about what refeeding mean't and the levels that we would need to go to to get our D to comply. She met us head on. Meals thrown all over the place attempts to break out of the house to exercise in the night and early morning. 4 interventions from the Gardai in our family house in the first 8 days, A number of trips back to A&E to get sedated and to the Garda station to be detained for breach of the peace. We also have 2 younger boys who obviously had gone through more than any 2 young kids should go through! All this and the preparation and supervision of 3 meals and 3 snacks a day. It was hell! So ....we kept going. In the hope that we would get through it. We got through November and started December, it was really tough but things were slowly improving she was mostly eating as required. However our D's mindset was still very bad. She could not bare any talk about health, ED, Eating, therapy etc. We could only distract and stay strong on the eating and no exercise. (We allowed her one swim a week and a yoga class). We also did some supervised walking with her. She found it very difficult and could hardly stay still but bit by bit she improved. She started to keep herslf warm. She started to sit and watch a movie (if she could fiddle with knitting or similar at the same time). She went back to school and she loved going to school. We were very afraid of the Christmas break from school, as she was attending school and this was keeping her occupied for a significant part of the day. She took a significant downturn in December during the holidays. We got throgh the holidays but she began to realise that she could disobey us without ending up back in hospital. We were worried that all the hard work would go to waste as she was becoming defiant again. She was not attending appointments in outpatient dept. and becoming braver in skipping food. Our Pyschiatrist intervened and offered us a place on the GOSH outpatient program or failing that said that she would get us a place in a specialised UK unit. As you can imagine the thought of getting D over to London routinely after our last experience was daunting. But we went ahead. We told her that she had to attend the outpatient program in UK or she would go inpatient again. She believed us and we started the very tense weekly trips to GOSH in Jan 2014. 2014 Jan to June: From Jan to June we (Me, my wife and our D) took a plane each week while leaving our 2 boys at home. They hated it. My D loved meeting other kids who also were going through the same difficulties as she was. As parents we also learned a lot from the other parents who were attending. (A number of whom post here or used to post). We also kept reading up on the issue and how to tackle it. We got a lot of good advice from GOSH team and slowly D moved from really only eating from the threat of being put back in hospital to eating of her own account. She also managed to come off much of the medication that she was on over this time. (Some against professional advice, but she managed it without sustained restirction or excessive exercise). It was a difficult time as frequently she would react to seeing her weight and restrict for a few days and then come around or embark on a new exercise regime, but over time her ED compulsions became less. Around April she regained her true appetite and we noticed her begining to eat of her own free will. We were delighted, however within a few weeks we noticed that she was binge eating. It was hard to believe....months of restricting and now binge eating. Of course many parents of children with RAN would be delighted if their kids could binge eat, but it also has its downside...she would binge and then restrict, put on weight one week and loose it the next, it was another rollercoaster. She only partially engaged with the team in "family therapy sessions" and generally ended up screaming or running or being violent in those sessions but she connected with some of the team in 1:1 sessions and made some improvements gradually in mindset. By June she was doing fairly well but it was unsure if her funding would be continued for further trips to GOSH. In the end further fundung was approved, but the uncertainity threw her. She refused to go any more! Jan and I have continued the link with GOSH on a less frequent basis, we are attending approx monthly. The summer holidays and back to school: We put together a program for D to keep her occupied during the summer without excessive exercise. Some of it worked some didn't. Overall she continued to slowly improve, still binging a little and occassionaly restricting but with much less frequency. Her mindset slowly improving. She withrew into herself a little in August but learned to relax properly again which was a reasonable trade off. Going back to school in Sep shook her a little and we saw some significant both overeating and restricting . For our D it seems to have been the social pressures of returning to school and the stress of never wanting to stand out or look stupid that caused her tension levels to rise. By mid October things have moved on again and she is beginning to mix better and make new friends. Things continued to improve and now we are in December and she continues to improve. Is D recovered? : She hasn't tried to restrict in about 2 months and is more comfortable with her now slightly overweight body. She has been weight restored for over a year. her periods have returned following an absence for over 18 months. She is eating healthily of her own accord. She is showing great interest in life. She is planning for herself to do things at weekends. She does a little exercise now but shows no urge to overexercise. She is showing love and affection to her family. Her mind is no longer in that dark place. She is off all medication. She occassionly binges a little on sweet foods which is not healthy and she doesn't eat breakfast which is really bad for a recoverying anorexic but she is maintaining her weight in the healthy range of her own accord. She mostly accepts discipline from her parents, we have not seen violence in our house for many months. She is doing really well in school. She is now not like the D of 2 years ago as she is now a full blown teenager. We worry about her and watch her every move, we are scarred by the violence and the horror that the ED has brought to our family, but we are glad to have our D back. She herself still takes herself too seriously, she is very traumatised by her in-patient treatment and has not forgiven us for doing this to her. We cannot talk to her about food or therapy or the past wrt ED but we are in avery different place, heading into Christmas this year than last year. It is not perfection, it probably will never be perfect, but it is more like normal family life now. I hope some of you are still with me. it is actually a condensed version. What have I/we learned? Trust your instincts : If things feel wrong they probably are wrong. ED needs to be met with a force stronger than the ED, and as we all know the ED can be very strong. A united front is essential as ED will try to find a way between any chinks in the armour. Reading this forum and other sources of info definetly help. Try to see the issue from your S/D's point of view even when they are doing what seems incredibly hurtful or spiteful. Reading Eva Musby's material helped us understand our D's mindset better. Use every resource that is available, don't be afraid to seek help whereever you can find it. Families do get through this, but it is a long and difficult path that will test you to the core. Even when things get better it is still different from the blissfull ignorance of life before ED, but far better than when ED was raging. __________________ Father of a 14yr old D mostly recovered from RAN and exercise compulsion,some ongoing problems but with things moving in right direction following over a year of hell!
Registered: 1372354429 Posts: 162
Reply with quote #37
Thank you for sharing your story, Irish.
You have done a wonderful job for your D. :-) __________________ Darling D dx w/ AN w/ some exercise compulsion, May, 2013, at age 11 and 3 months. She is WR and our life is back to normal, but I am vigilant about dealing with ED behavior and thoughts when they pop up. There is always hope as long as we keep fighting the ED!
Registered: 1268123793 Posts: 462
Reply with quote #38
Well, not been on here for a long time. I first found FEAST when my D was desperately sick way back in 2009 She saw our beautiful friend's D on TV and told me about this forum, she thought it would be good for me to get some support. For several years we went thro what I can only describe as hell. She had 2 inpatient treatments, one lasting a year and a half. Months and months and more months of outpatient, day patient and care in the community. Self harm, some so serious as to end up in A and E. She pulled out her hair in clumps, picked holes in her scalp, scalded herself, cut herself. She lost a good 2 years of schooling, resulting in her not taking her GSCEs.
5 years later she is attending 5 University interviews to study Mental Health Nursing. 5 years ago I was desperate, lost, destroyed, right now I couldn't be any prouder of her.
There really is a light at the end of the tunnel, it may be faint and far away, but it's well worth striving for, it truly is reachable. __________________ A Misty Morning does not Signify a Cloudy Day
Registered: 1284535839 Posts: 3,048
Reply with quote #39
Irish Colm and Yorksbelle, thank you so much for sharing. You both have been in desperate straights over the last few years and wonderful to hear that your daughters are doing so much better.
__________________ 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: 1316261358 Posts: 1,114
Reply with quote #40
I have put off writing our story of hope on here for a long time. Seems like tempting faith somehow. Plus is there such thing as full recovery?
Will the risk of relapse ever go away?
I don't know.
What I do know is that there is hope.
Our story began in 2011, around the time of Ds 16 th birthday, June.
A familiar story to most of you on here.
Change in eating pattern. Slow weight loss.
Slow but certain scary recognition on my part.
By time I realised there wasn't going to be a quick fix, D was well and truly sucked into the grasps of ed.
CAMHS followed. Useless at that point. It's now sept 2011
No one told me to feed her.
I watch her go down to a kids size age 12 clothes. Her eyes are empty and hollow.
She exercises all the time. Star jumps. Sit ups. Never stops tapping her leg.
I go on line, and find this forum. I read non stop for a day.
I post. The amazing Charlotte picks me up. I cry.
Charlotte tells me that's ok, but in between feeding!
So we start the refeeding nightmare. I give up work for a while.
Still, ed is too strong, she ends up in ip from Nov 2011- June 2012.
After discharge I have sorted a better psychiater.
We carry on with 3 meals and 3 snacks a day. She carries on pushing me away. Seems to hate me.
However, she is in a good routine at this point, the exercising has mainly stopped, although she still jiggles a lot!
She's lost a year at college at this point, not a bad thing at all, gives us more time.
Things slowly improve in 2013.
She wants more independence. She starts to help prepare her own food.
Still very ridget and anxious.
But she wants a future. I tell her that's fine, but I won't let her go to uni unless I feel she's safe.
All through 2013 we carry on with supervised meals and a strict routine.
No more food throwing at this point thankfully. No more screaming. Some self harming though.
She's takimg control more and more.
2014 comes along. She passes her A levels.
She can eat independantly and sensibly. She's maintained her weight for ages. Even admits to liking chocolate again!
So she starts uni sept 2014.
And it's going great! She's loving it. Has made friends. Not lost weight.
She's feeling young, like she should have done those lost years.
Our relationship is better than ever.
She's coming home for Mother's Day this weekend, her instigation.
I tell her I've bought some chocolate hot cross buns.
" yummy mum" she says.
She's amazing. I'm so proud of her.
She's so incredibly brave.
So many times I thought she would never recover, never have a future.
If you're struggling at the moment, please don't give up.
Take it day by day, meal by meal.
And never ever lose hope.
Where there's a will there's a way.
Registered: 1304383538 Posts: 1,208
Reply with quote #41
Lovely, lovely update Purple, and definitely a Story of Hope, for those just beginning the struggle, or deep in the trenches.
Enjoy those chocolate Hot Cross buns!!! Warmly, sk8r31 __________________ It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
Registered: 1401895693 Posts: 367
Reply with quote #42
Beautiful! Thank you for sharing. I read it again and again to find hope to carry me on for another day.
__________________ 16-y-o d dx RAN Mar 2014; WR in 3 mons but continued to gain for another 30+ lbs. ED is mostly gone though some minor remnants are still present; SH finally stopped after 2+ years; started DBT in Jun '15. "Voice in her head", OCD, body image, all slowly chipped away. I am finally breathing again and trying to enjoy life no matter what it brings me.
Registered: 1422903374 Posts: 118
Reply with quote #43
Thanks Purple. These stories of hope are a tremendous source of strength.
Registered: 1378301147 Posts: 123
Reply with quote #44
This is wonderful to read and I'm so glad your d is enjoying uni - so happy for you both!
__________________ Mother of 19 year old, in recovery and making good progress.
Registered: 1411469095 Posts: 151
Reply with quote #45
Just to update that things are much better here at the moment! We're not totally out of the woods and I think I will always have to be on guard regarding ED.
My daughter was weighed this week and is now 101% of her weight! YAY! We don't have any more major melt downs but she still tries to push the boundaries when she can - trying to have the least food where possible. But more of a winge and whine which is way better than the screaming fits on the floor and banging her head on the wall that she used to do. She still won't eat fear foods like chocolate and crisps etc. She has been on a meal plan which seems to have worked well as she knows exactly what is expected and what she has to do - she seems to like this structure. She is now back at school full time and doing PE again and living a normal life (as am I finally!) It's been a long hard slog where life did stop until she ate. I wouldn't wish it on anyone. This whole nightmare started last Autumn and over Christmas she was seriously ill in hospital for 3 weeks and since Jan have been re-feeding. I will always worry about her for one reason or another - we've had so many worries with her over the years with possible Aspergers, seizures, naughty behaviour for which she is going to be assessed again. But as of today we are in a good place! __________________ Daughter was age 11 when she started restricting Aug 2014, admitted to paed ward Dec 2014 for low BP, pulse rate and spent 3 weeks there. As they were about to NG tube her, she decided to eat again. After approx. 1.5 years on a meal plan and lots of toil, sweat and tears she is weight restored and has just been discharged from NHS care. It's been a very slow traumatic process but each day we are making progress.
Registered: 1434467373 Posts: 1
Reply with quote #46
Hi< i have only just joined. It is heartening to read about your daughter's ongoing recovery. My daughter aged 13 is due back home from hospital next week and I am very nervous about the new routine and how resistant she might be to the changes.
Registered: 1304383538 Posts: 1,208
Reply with quote #47
Hope you will post any questions you have on the main forum. There is a wealth of info here, and many members who have traveled this challenging road before you, and can offer support, advice and insight. Glad you have found the stories of hope and recovery helpful. When you are just starting out, it's good to know that there is definitely HOPE for full recovery. Warmly, sk8r31 __________________ It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
Registered: 1256010312 Posts: 926
Reply with quote #48
Just to add some more hope and encouragement...my daughter was very ill with RAN in 2009 while in college. Thanks to this forum and the amazing team at UCSD she got well. She graduated from college, got married, and just celebrated her 5th wedding anniversary on Friday!! So grateful to see her living a full, happy, and 100% ED-free life!
Registered: 1392400297 Posts: 350
Reply with quote #49
I’m going to start by apologizing for the length of this post. It’s a post that has been almost two years in the making and really, probably longer than that.
Last week I watched my daughter graduate from high school. Now for any parent that is a proud, happy moment but for the parent of a child who has overcome an eating disorder it is so much sweeter. There was a time we didn’t think it would be possible. Fearfully we worried she may not survive to even have a chance. Certainly she wouldn’t graduate with her class. With intervention, determination and a lot of hard work she did survive, and then she flourished and that beautiful, beaming spirit of hers is again lighting up the world around her, stronger for having survived.
Looking back, I can remember a little girl who really only acted up when she was overly hungry. The Snickers candy bar commercials could have been written about her: “Eat a Snickers. You’re not you when you are hungry.” So we fed her. Little did we realize just how true that statement would become. The middle school years came and anxiety / panic disorder took a toll on her. Over the course of a few months our lively, vivacious daughter became dimmer and dimmer. By the end of 6
th grade she could barely leave the house. To go anywhere I had to go with her. I sat in the corner at various friends’ houses and much like a toddler she would check in with me every so often and that gave her the strength to go off again. She gave up dance and started equestrian riding which served as a kind of therapy for her. Slowly with the aid of medication, a wonderful psychiatrist, a very good therapist and consistent work learning coping skills the anxiety grew dimmer and Natalie was once again flourishing. By 8 th grade she had joined the cheerleading team and surprised us all by starring in the Spring Musical. We didn’t know she could sing! She never sang around us. High school came and she sailed through her first two years. At the end of that second year I had started a wellness campaign for myself. I joined a gym and started “eating healthier”. Natalie joined me in my efforts. Not that she had a lot of weight to lose, maybe 5 lbs, but she wanted to get stronger. She was captaining the cheerleading team and wanted to be the best she could be. We climbed a mountain together that summer. We have a picture of us together on top of that mountain beaming. I now mark that steep descent down the mountain as our decent into hell.
She lost those 5 lbs and then another 5 and then some. She dressed in multiple layers of baggy clothes. Food choices changed. She asked for more health food items. She was restricting but hid it from us by eating dinner with us as usual so that we would see her eating. It became the only meal she did eat until she couldn’t even eat that. You all know the scenario. Finally we got her to her pediatrician. At 5’ 3.5” she weighed 90 lbs. An appointment was made for a well-known outpatient program in our area. I naively thought we would get her in that program and all would be fine. We went to the appointment and they told us she would require a higher level of care. That’s when my panic set in. They were telling us about residential programs out of state and then said she may require hospitalization and that would be two states away and there is no time to waste. WHAT?! Fortunately, we were able to get her into a residential facility in state. Beneficially, it was just a few miles from my mother-in-law’s house and not far from my husband’s office. Those two weeks of making arrangements were torture. Anxiety for all of us was sky high. We tried to get Natalie to eat. We bought Ensure. Knowing that I was “sending my baby away” I didn’t want to add to her anxiety any more than necessary by requiring her to eat fully. Isn’t that what “good moms” do? Battling an ED is counter-intuitive. She lost another 10 lbs. Miraculously, the ED doctor cleared her for the residential program and she didn’t need to be hospitalized.
And I began my education in Eating Disorders. I found this forum. I read. I devoured Carrie Arnold’s book – “Decoding Anorexia” and the bible – “How to Help Your Teenager Beat an Eating Disorder”. I learned to separate my daughter from the Eating Disorder. I named the Eating Disorder, Voldemort. I was determined to kill him in all his various horcruxes. I found solace and strength which helped me cope with all the crap ED threw at my husband and me during those lovely family sessions. After one particularly brutal session, my husband and I went out to dinner and ordered a bottle of wine. I kept that empty bottle. It’s our badge of courage.
In residential Natalie was always compliant. At first she was compliant only because she figured it was the quickest way to get out of there and back to her life. Then as the weight increased there were little bits of understanding – that she was indeed ill, that she didn’t want to live like that, that Natalie was worth fighting for. Voldemort still raged but at least one horcrux was destroyed. After 61 days in residential treatment, having broken through the 100 lb mark, she came home complete with a meal plan of exchanges and authority to prep her own meals. Sigh.
She stepped down into a PHP program that was Maudsley based. I had had time to do my research by then. That meal plan with exchanges went out the window though she still prepped much of her daily meals/snacks. Two weeks in PHP and she stepped down to the IOP program and returned to school. That’s when my fun really began. She gained and lost the same two lbs multiple times. Ok kid, we tried it your way and you’re not making progress; now Mom is in charge. Oh there was kick-back – bags of pretzels tossed in the garbage (I pulled them out and put them back on her plate) – a plate of pasta thrown across the table (I caught it without dropping any. Pasta reappeared at nighttime snack and then for breakfast. It was eaten.) – an episode with a grilled cheese sandwich (I’ll never look at a grilled cheese sandwich the same.) – but food went in and she gained. She was put on olanzapine and that helped too. DBT classes for both of us were very beneficial. By the end of the summer she was weight restored but I suspected we would need to add more.
By October her pediatrician was strongly encouraging us to have Natalie checked out by a gynecologist as menses had not returned and she was 18 months without menstruation and had never really been regular. I allowed the gynecologist to talk me into starting her on hormone therapy to jump start her system. It is my biggest regret. Imagine going from an estrogen level of a menopausal woman to high levels of estrogen coursing through you. Talk about mood dysregulation! She was having suicidal ideation. Her appetite went into overdrive. She started binging which further decreased mood. We stopped the hormones and her psychiatrist changed her medications to counter the depression. By then, having gone through a few not so good therapists, we had a wonderful therapist who really helped her through. We worked on the binging behaviors aiming for steadily spaced meals/snacks with a balance of nutrients and I spent more than a few nights on the couch in front of the kitchen. We weren’t always successful but we kept going. On the plus side her menses returned and have remained regular and she added more weight. That added weight (15 lbs above her previous high) was really the tipping point to recovery. That was when her mental state really showed improvement.
In February, one year after entering treatment and 6 months post WR, she chose to go public and posted on Instagram before and after pictures along with her story:
February 10, 2014 was the day everything changed. On that day I started a 2 month residential treatment, followed by 4 months of intensive outpatient treatment for an eating disorder that I didn’t even know I had. I remember how angry I was that I was being sent away to “get fat” because “all my hard work was being thrown away.” Little did I know how disgustingly emaciated I looked to everyone else, because all I saw was fat. Even at 80 pounds, I thought I needed to lose more. It was never enough. And that’s the thing about eating disorders. You don’t know how serious they are until you experience them. You can’t understand the fear that you might lose your best friend or your son or daughter because they’re so malnourished that their heart is about to give out. I can’t believe how far I’ve come in just one year, and while I hate my body the way it is now, it’s a hell of a lot better than never having energy, being cold, my hair falling out, not concentrating, fainting just from walking up stairs, and all the other awful side effects of anorexia. I’ll always have an eating disorder, it’s just now I have the power to choose whether or not I act on the behaviors I know to be so dangerous. Eating disorders are not a joke. I’m proof of that. Had I not been forced into treatment, I know for a fact that I would not be living today. As for that middle picture, yes I have fat, and I’m supposed to, no matter what my mind, society or the media may tell me. I’m trying to accept that. So here’s to the worst and best year of my life in so many crazy ways. I’ve met some amazing people, and I’ve faced countless incredibly difficult challenges along the way, but I finally feel like I know who I am because of all this. Not only did I gain the weight back, but I gained back my life, and then some. You can see it in my eyes, in my smile, and your can hear it in my laugh. I’m Natalie again. And so here’s my #transformationtuesday exactly one year from the date I went into treatment. It would mean the world to me if everyone could just keep in mind that National Eating disorder Awareness week is February 22
nd-28 th!! #NEDA
And just one more thing, I am definitely NOT ashamed of having an eating disorder since more people suffer from them than your realize, but please honor how difficult this is for me to post. I have never exposed this but I feel like something good should come out of all my pain and bad experiences and I finally feel brave enough to do this and I am proud of myself. And if anyone EVER needs someone to talk to about ANYTHING, always know I’m here.
After posting her story the documentary movie making class at her high school asked her if they could do a documentary about Eating Disorders and would she be willing to be part of it. Their challenge theme for the year was to produce a documentary about finding balance in life. She readily agreed. And while the documentary also included an interview with an adult recovered anorexic and advocate it was Natalie who carried the film. She and I accompanied the documentary class when they presented the film at their completion. They won first place.
Oh, and that new body she was hating in February? She’s growing more and more comfortable with it. She has held her weight steady for 4 months now. She eats freely in a variety of settings, helping herself. I chuckled to myself last week as we were debating what to have for dinner one night. My husband said “I really feel like pizza.” Natalie piped up “Oh yes! Let’s get a big cheese pizza, and can we get French fries? They make the best French fries.” Now that is a conversation that would not have occurred last year! She’s beginning to love those curves. Her senior prom was the beginning of the month. She was gorgeous. Apparently, I’m not the only one who thought so. She was voted Prom Queen.
Does this mark the end or our story? I can’t say. She will always have the propensity for an eating disorder but that doesn’t have to rule her life. We are moving on with life, remaining vigilant and setting up safety plans as we prepare to send her off to college. Yes, she is going to college. Yes it is out of state. Maybe I’m being naive but I had to let her pursue her dream. And if she stumbles, well, at least now I know what to do. My faith remains. Natalie was interviewed recently. She ended the interview by stating that “It’s really important to have a sense of faith, not necessarily in God, but that you are unique – that there’s no one else like you on this Earth, there never will be and you were made for a purpose.”
So for all of you deep in the trenches, I want to say keep on fighting. Recovery really is possible. I hope and pray your journey is short. I know everyone is different and on their own time schedule. I ache for those of you who deal with self- harm, purging and violence. Those are issues we didn’t have to deal with, thus in my eyes you truly are hero parents.
Natalie and I are planning on climbing that mountain again this summer…….only this time we are packing a picnic lunch to enjoy at the summit. Keep on feeding.
__________________ Mom of a 19 yr old. RAN diagnosed 1/2014. Residential, PHP, IOP. W/R since late summer 2014. Now in remission and thriving in her second year at university. My Faith remains.
Registered: 1408094537 Posts: 607
Reply with quote #50
I feel tentative to post here, but we are moving forward with such momentum, I do feel compelled to share our story. Especially for those parents of young ones and BOYS.
In hindsight, my Son struggled with his emerging ED for quite sometime before it was diagnosed. He was affected by 'healthy eating' classes. I remember him asking questions, 'Can this give me diabetes?' etc but I didn't noticed that he was subtly restricting his food. I noticed he was saying 'I don't like that anymore' but did not think anything of it. I noticed him not finishing all his meals, but he seemed ok. For him it wasn't fattening foods or foods that made much sense. Just certain foods, and those foods could change. June last year he had just been hospitalised for a possible gastro issue and came out severely underweight, dx with 'Behavioural' Anorexia (Is this even a dx? 'behavioural'). The path to the hospitalisation was fraught with months of worry, missing school due to feeling 'bad' 'sick' and too 'tired'. We visited the Drs probably 8 times in 2mths, we received sideways worrying looks and puzzled faces. If anyone had thought it was an ED out of the probably 5 different Drs, Nurses who saw him, no one said. One Dr told me I better get him to a Paediatrician. We went privately to a Paed, who noted his state worrying, his weight very low, skin dry and pale, he was irritable, and that we must look hard at the reasons for this, she sent off tests and samples, but she did not mention EDs either. I always wonder what would have happened if someone had just 'mentioned' it? I had researched absolutely every other possible ailment. Why would I think my 10yo boy could have an ED! We were preparing for chrohns, coeliacs, EoE, or maybe even cancer. The tests came back, nothing there. I took him to hospital one night, he just looked SO sick. I packed my bag and decided I would not leave until something was done. We live in a rural area, so were transferred to another town and childrens hospital for endoscopy. After 3 days in hospital, he completely stopped eating and drinking, at one stage would not swallow his own saliva. We were told it was likely an ED - I think the words were 'his eating has become 'disordered' but he doesn't have an eating disorder'!! We had very little guidance in our time there, we were left to feed him ourselves and not told anything about what this dx meant or how we were meant to move forward. It was suggested we go back to our area to deal with 'our people'. I was terrified. He weighed 21kg and probably should have been somewhere like 29kg. I knew there would be very little support at home for something like this. We stayed longer but still left weighing less than when we first went in. I had been worried about his health and weight since Dec 2013. He was acting weird, his mood was terrible, angry, he was not eating lunch, always feeling 'sick', spitting food out and wrapping it in napkins and wouldn't use utensils, avoiding mealtimes, lying about having eaten and so many of those things we know now are ED. He choked on a croissant at Easter and ate a lot of chocolate, felt ill, then said he couldn't swallow and things were getting 'stuck' in his throat.
When we started re-feeding at home and FBT he was banging his head on the wall, throwing food everywhere, pulling his hair out and scratching himself, smashing things, screaming, running away, he bit me multiple times, threatened me with a knife and went through a suicidal phase, even once tying a robe belt round his neck. He swore at us, words we had never heard him use before, ever. He called us all sorts of profanity and the worst parents in the world because it is all our fault for taking him to hospital. He told me he hoped I got breast cancer and died so I would leave him alone. And he cried and cried.
He stayed inside unless made to go out for over 2mths. He couldn't go out in public/town due to social phobia, panic attacks, anxiety and just a general inability to cope with the world (or the possibility of food in the world). We went to the beach and he catastrophised about tsunamis and natural disasters endlessly. We couldn't have the TV on or the news. He got paranoid about how we drove the car (too fast) and he couldn't handle the sensations of movement, or wind, or water on his body, had trouble bathing. He used to scream 'the water is hurting my skin'. He would not use any toilet but at home. He ruminated over ebola, vomiting and germs. We would go somewhere and then have to leave 99% of the time. He cried 100s of hrs about how he wanted to die as it is too hard to eat, his life is over, there is no point and he will never get better. He had recurrent nightmares for months about conflict, woke multiple times in the night, I slept in his bed, he slept in ours, we all slept together. We all cried. We watched him sleep at night, he looked like a wounded animal.
Through this most testing time, we had pretty minimal support in our rural area (one MH nurse), when that ended due to her resignation we had no one who knew a lot about ED, especially not in boys who got sick at 9yrs....and we were at the worst point in his re-feeding, 5mths in and we were all struggling. Then despite me sending complaints and writing a gazillion letters, we were dumped from the public system, no therapist, no referral accepted, nothing, most devastating was NO funding to access better more experienced support for us and him. He never saw a psychiatrist or a psychologist until February 2015 when I lost my rag at the public health system.
I did use FEAST a lot and found FB groups and EDPS, I read all the books I could get my hands on. There are not many options in NZ for decent FBT therapists let alone IP or other programmes. Definitely no specialised programmes for youngsters even if you had all the money in the world.
Weight gain was slow in general, I tried all the tricks but I could not get him gaining fast enough to really heal his brain and keep up with growth. We could never get him eating FAST enough, slow meals were EDs thing.
We had to borrow money, harshly prioritise and crowd-fund to afford his new FBT treatment and the time off to travel to it each week out of town, without losing our home. We made a deadline for heading overseas if no improvement was seen.
New FBT started off with a bang and I was so hopeful, I wished we had started with this type of support the year before, he gained consistently until he was near to WR then he plummeted backwards in a way I had not seen before. He was not severely underweight and did not meet criteria for a hospital admission on weight alone, but we were all really worried as his state was terrible and we were shattered. With my angry desperate Tiger-Mother-Pants on and the help of our new and experienced FBT therapist we got him admitted back to hospital 2.5hrs away from home. She got the powers that be together, on the same page, along with our skeleton MH services at home.
They tailored a simple programme for him, he attended with the older girls part of the time, it was a bit weird, but he coped well.
We still went through all the psychoanalysis of our family again at times, the 'fear of growing up' shite, and the 'he needs to spend more time with Dad' blah blah. Because of all the reading and talking I had done I was able to filter most of this out and take the good bits. He was ng tubed and fed for 3-4wks. Each time we had a meeting I just asked for the tube to remain as long as possible. At the 3rd week, he came back, like the lights went on. I swear it was just simply the weight was nearly right. And the meds were right and monitored daily. We had some back up and the structure of hospital. We had some RESPITE. Weight on discharge was slightly higher than his 'goal'. We have managed to put on more since and maintain it there through a few more cms of growth these last few months too. I knew he needed more and to not be happy with this from reading here. I firmly believe this from my experience.
He told us last month we are the 'best parents in the world' 'he is getting used to his new body' 'he has so much stuff to do as he has missed out for over a year'.
He missed so much school, did not go fulltime for over 15mths. I stopped everything, working, studying, dressing properly (!) and spent 6-8hrs at the table for at least 8mths. He has been back at school for 6wks and is doing amazing, in the same year, he missed some things but he has slotted right back in just fine. He is eating mostly independently (as much as an 11yo does) and is growing. He is back participating in school trips and having friends over. There are moments, ED comes raging back into the room, out of the blue, but those times are getting less and less. He is managing his anxiety with the many skills we have practised but he seemed to never be listening to and it is lessening all the time
As Parents we are in this weird place, we feel relief, but its very guarded, like it will all come charging back through the door at any minute. We remain vigilant. And we try to heal, because we are all damaged in different ways from this experience.
Stand strong and with conviction that your children will come back to you. Xx __________________ Son 9yrs when he became unwell 2013, ED slide from April 2014, dx at 10yrs July 2014, 2 hospitalisations - dx so many times Behavioural Anorexia, EDNOS, ARFID. FBT from August 2014. Anxiety, Emetophobia. 12.5yrs old now! In recovery, gets better every day with constant vigilance, life returns.