Registered: 1512291655 Posts: 4
Reply with quote #1
Hi, I posted a few days ago for the first time. My daughter is now 8 weeks into the ED but has lost a lot of weight rapidly. She was told by her Paediatirican yesterday that she must stick to the meal plan or be admitted to hospital if there is further weight loss by Monday. Until now we had not taken charge enough (she had been existing on around 1/4 of what she should be eating is my guess) and we started this last night. We managed to plate up her dinner and put a normal portion on for the first time. She ate and drank nothing. At snack time, I gave 3 choices and she sat down but refused them all. She got a small (low calorie) yoghurt drink from the fridge and we took it off her. She was upset and then calmed down enough to drink a cup of tea. She had a couple of spoons from the bowl of yoghurt I spooned out. We were upset but felt this was progress as we had remained in control. Her meal plan consists of cereal and toast for breakfast. She ate the cereal but has refused a snack, lunch and the afternoon snack. She has probably had enough to drink. Our Paediatrician has told us to bring her to hospital if she doesn’t eat anything for 24 hours. I am feeling very scared. It felt so wrong to take the yoghurt drink off and we have got rid of them now. It seems to me that the ED is always easy step ahead of us. Has anyone else had this much resistance to the parents taking control?
Registered: 1475926564 Posts: 33
Reply with quote #2
So sorry Ellan, it is so difficult sometimes. My daughter also refused food and drink to the point that she would eat nothing at all and we took her to hospital. To be honest I think she was relieved as she probably didn’t know why she couldn’t eat or drink anything. It did have to get worse before it got better, and she needed intensive treatment in an IP, but we made good progress there and since her discharge a year ago she has been doing really well. Are you in the UK?
Registered: 1450168170 Posts: 969
Reply with quote #3
Actually I don't know of anyone who has not had this level of resistance and worse. We had complete refusal, total meltdowns, violence and self harm.
It's totally nerve wrecking but it is the time to take your courage in both hands and to really connect with your determination to be stronger than the eating disorder. I think you are doing great. Continue to be calm, matter of fact and determined. Like most of us that is likely to be the face you present to your child while you are distraught, scared and doubtful inside. Keep the faith. You are on the right path. These are the hardest few weeks. The eating disorder will force your daughter to push against the boundaries but remain rock solid and this passes.
Hang in there and holler if you need more tips, support or to vent.
Oh, and another thing. Remain consistent. Serve each meal and snack at a regular time no matter what. __________________ 2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid. May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles.
Swedish proverb: Love me when I least deserve it because that's when I need it most. We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle. If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination ) We cannot control the wind but we can direct the sail.
Registered: 1510027329 Posts: 35
Reply with quote #4
If you read through the threads, everyone seems to have this level of pushback or worse. Most would enforce complete bed rest with removal of all books, phone, TV etc if a meal or snack is missed. Use whatever leverage you can to get compliance! The alternative is a lot worse. Sending you luck and best wishes.
Registered: 1496061527 Posts: 926
Reply with quote #5
I fear that is totally normal and you need to get in charge 100%. The big question is how and that is different in every case and you need to find out. First: no decisions at that state. She cannot decide between 3 options. Here is your snack and you need to eat that now. Not more. Decisions are for Phase 2. Second: no low calory products in the fridge. Buy the heaviest things in the supermarket. Double cream, double fat. You will need it. You need to take control, it is great that you took off that yoghurt. But try not to let her refuse. If she lives the room, follow her with the food. It is difficult and you will see a lot of resistment but she must learn (ED must learn) that not eating is NO OPTION. If you need to spoon feed her, do it. If you need to sit with her under the table, do it. Try everything until she is tired and then she might eat. Try to wake her up in the very early morning with a heavy smoothie and just say "you need to drink that now" and let her go back to sleep then. ED is not awake in some cases at that time. Maybe she needs IP to get started. Many here needed that for the beginning (my hands up). Try to avoid it by being VERY consequent. Food is her medicine and she needs to take it. Send you a big hug from Germany, Tina72
Registered: 1449955305 Posts: 399
Reply with quote #6
You are in the beginning of this unfortunate, but necessary, journey in order to get your D to recovery. I remember well being at the beginning of it with my D. I have never been so shaken. I think you have to trust your medical providers while you get a chance to educate yourself about ED. The more you learn, the more you are able to sit in the driver's seat of your D's treatment plan. And it takes time. In the meantime if the pediatrician says your D needs to go to the hospital I would take her. The medical consequences of ED are serious. Is it possible to contact the Pediatrician to ask what the he/she expects will happen when D is admitted to the hospital? Is this a temporary, emergency measure, only or does the Pediatrician think D will be connected to other ED programs/resources from the Hospital? If you let us know where you live (I think you are in the UK), forum members with knowledge of the local healthcare system will likely provide helpful info. There are many helpful educational resources available on the FEAST website. The book "Help your Teenager Beat an Eating Disorder" by Locke & LaGrange is a great place to start too. Toothfairy (forum member) aggregates and posts many helpful, educational online videos. Search the forum for her posts. I am so sorry that your family has to go through this. I'm sending you a virtual hug across the pond. I remember well how I felt at the beginning - terrified, in shock, desperate, as if the rug had just been pulled out from under our collective lives. We have our lives back now. Keep coming back and posting. This forum is a treasure trove of support and information. Thinking of you.
Registered: 1284535839 Posts: 3,489
Reply with quote #7
This stage is so hard and so frightening. There is a reason why a significant proportion of those with AN require hospitalisation for stabilisation. This does not mean that you will not succeed at FBT. I agree that choices at the moment will only increase the anxiety. Work with things that you know that she would have liked in the past and then insist that this is what is going in. If you are going to use an alternate, use a supplement such as Ensure. That is, if she cannot eat X and you feel it would be better to move the meal on - you decide how long, then her alternate would be the supplement- make sure it is an adequate amount.
If she continues to eat such small amounts then I would take her to Emergency for further assessment, it does amount to nothing in comparison to her needs. Your paediatrician is clearly aware that things are getting to the critical state, given the three day deadline. __________________ 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: 1454901521 Posts: 272
Reply with quote #8
Hi Ellan, so s sorry your d is sick. You are at the very start of this very long journey.
We did as Foodsupport said. We gave her meal (no choice from d) and when she didn't have it, she had an ensure. Initially she would only have a 1/4, but she increased the amount slowly until after 7 weeks she regularly had 6 ensures a day. She was one of those who went completely off food. I would suggest not to replace the meal with something less substantial (fruit, salad) as your d would need plenty of protein and fat to get better, full fat yogurt is also a good choice, as well as nuts.
My d would have all hear meals either in her room or outside on the verandah with only me present to supervise and distract. We played candy crush. I know it's hard, but try and stay calm even if you have to fake it. Eva Musby has a great book and youtube videos to help with refeeding. The whole refeeding process was very hard on my h, so he played a more supportive role. Encouraging me, distracting d and her sister etc.
Try using immediate incentives to help her to eat. For example if ate het meal she could play some games on the iPad for a set time. In addition if she followed the mealplan for the day (or initially if she was able to eat more than the previous day) she would get a set $ amount. She used the money to buy itunes to play het games.
Have a set routine with the all the meals at regular set intervals (6 meals meals and snacks every 3 to 4 hours). Prepare the meal beforehand and at the set time take it to her and give her half an hour to eat it. Prompt het with "take a bite", etc. I used to say at the very beginning, "only eat what you can manage", then later "only eat what you can manage, but it had to be more than yesterday", until she could follow her mealplan. This routine needs to be followed for months. My d is wr since March and I still serve her 6 meals and snacks at regular times every single day.
Sending you tons of hugs and 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. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
Registered: 1512291655 Posts: 4
Reply with quote #9
Update. My D ate a full yoghurt last night, almost all of a cereal bar this morning for snack and a quarter of a tuna forward/mayo sandwich for lunch. We know this is still not enough but we think it is a big improvement. She knows we are close taking her to hospital that she saw me packing a case. She’s also feeling dizzy and I’m sure she is frightened by this. We’ve got under total supervision and she’s not allowed to go anywhere on her own or even walk around. Thanks for your words of support and encouragement. We hope this is the beginning of the end of the decline realise that things could backlash yet
Registered: 1454901521 Posts: 272
Reply with quote #10
Great job!!!! Looks like yoghurt is her safe food. Look for Greek yogurt, they are full of fats, some even has a high protein content. I combine plain Greek yogurt with fruit flavour yogurt for variety. Tuna is an excellent source of protein as well as omega 3, which the brain loves. I choose tuna and oil and then mix them together before putting them on a buttered sandwich (both sides), which I then toasted.
The dizziness is a bit of a concern, is she having enough fluids? If she faints, take her to emergency immediately as her heart may be compromised.
Just keep presenting the food and maintain the expectation that she has to eat it, regardless of her behaviour and don't bother too much what she would be saying. My d would still say that she doesn't want this or that. I don't acknowledge it, just put it in front of her and tell her she needs to have it, and she would eat it. Don't react to her aggressive behaviour, it comes from anxiety and is not personal, try not to get upset. If she sees you are calm, it will tell her you are in control and this will decrease her anxiety.
Remember this is a long journey, it took us a year from release of inpatient treatment at the hospital to weight restoration. Her mood unfortunately will worsen before out gets better. The men at the Minnesota semi starvation experiment also experienced a decrease in mood during refeeding: https://archive.org/stream/MenAndHunger#page/n45/mode/1up page 46
Hang in there! __________________ D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for a year and WR at age 11 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
Registered: 1496061527 Posts: 926
Reply with quote #11
that is great news! Try to get one or two smoothies into her (fruit and juice added with canola oil), that is easy to drink and looks healthy and you can get up to 500 calories extra with that. "she saw me packing a case" So that may have moved her. So let that case where it is and if she refuses to eat get up and fetch it and say "I have to finish to pack that for hospital then". We did exactly the same on some difficult days after IP, I told my d to pack a case if she refused to eat. I totally forgot that. I hope that will give you some hope that I really forgot that. So keep going! Forget all meal plans and calorie counting and just try to get in there as much as you can. Get canola oil or cream into the yoghurt, cream into the milk, some added even canola oil to orange juice (if it is not too much, that works). Butter and mayo on both sides of the sandwich. We have learned all our lives how to do low fat and save calories and you now need to do exactly the opposite. In our grocery I knew which are the most heavy yoghurts and puddings and other products after 2 weeks. You are doing the right thing. Ask whatever you need. Tina72
Registered: 1452437794 Posts: 2,109
Reply with quote #12
Welcome from Dublin. Ellen I would be concerned about her feeling dizzy. Has she had a medical work up? How much weight did she lose and what is her current weight /height? __________________ Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, and Living life to the full, like a "normal" teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
Registered: 1304383538 Posts: 1,342
Reply with quote #13
You are doing great...hang in there!
However, it may be necessary for hospitalization for medical stability. Our d was the same; not total food refusal, but rapid weight loss that compromised her heart. If hospitalization is needed, it is not a failure. A short stay can get her medically stabilized, & then you continue forward. Sending warm support, sk8r31 __________________ It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
F.E.A.S.T. Outreach Director
Registered: 1185889110 Posts: 5,945
Reply with quote #14
Resistance is normal. Unwittingly, we loving parents can increase the resistance by being visibly emotional, unsure, or inconsistent -- but we can also decrease it by being calm, confident, and clear. Our kids have EXTREME fear and they need reassurance that there is a light at the end of the tunnel, that you know what direction you are headed, and that you are there to keep them safe from the illness that is hijacking their life.
Going to the hospital is not the worst thing, in fact it can be the perfect thing to make it clear that not getting enough food is no longer going to happen. Almost all patients start eating the first day in the hospital because they are given no choice, the messages are clear and unemotional, and it is by definition temporary. What we are doing at home is temporarily making our homes as safe and firm and clear as the hospital so the eating disorder has to take a back seat. The eating disorder can be beaten. But is is us, the parents and the treatment providers, who do it, not the sufferer. We are the ones who need to understand, to make the commitment, to be courageous. YOU CAN DO THIS. Parents do completely amazing and brave things when we know what to do. __________________ Laura (Collins) Lyster-Mensh F.E.A.S.T. Outreach Director
Registered: 1496061527 Posts: 926
Reply with quote #15
If she is feeling dizzy, she might be dryed out. Are you sure she is drinking enough? My d even restricted water at that point...
If you think she is in medical danger, take her to ER. Better one time too much than too less. Tina72
Registered: 1396016102 Posts: 4,857
Reply with quote #16
Originally Posted by
LauraCollins_US What we are doing at home is temporarily That's an important point! When your d fusses and fights and tells you you are the problem, do tell her that this is TEMPORARY and the sooner she starts eating everything she needs to eat, the sooner you will be able to back off. "Normal" is another great word for our kids. "It isn't normal to shower in the middle of the night - please start eating." Or something like that. Sounds like you are making progress. Yay!! AN is the weirdest illness and makes our kids, well, act weird. I agree with the others who have said that new (i.e., appeared with or after AN arrived) oddnesses are likely to melt away after wr. Keep swimming. xx -Torie
__________________ " We are angels of hope, of healing, and of light. Darkness flees from us." -YP ♡
Registered: 1509917778 Posts: 24
Reply with quote #17
Our son just spent 11 days in the hospital with a resting heart rate of 37 (he had lost about 12 - 15 pounds). He was a runner, and heavy into exercise. The day I took him to emergency I had to follow him from room to room - I was trying to distract him from exercising. I warned him that I might have to take him to the hospital and he said, " Do it! I WANT to go!" So, we did. I had no idea how much even just a few weeks of starvation can affect a body. Even if you don't take her in, at least visit the family doctor so you can have all vitals checked. My husband took my Son to his pediatrician, who took one look at him and recommended the best ED clinic in our state which is connected to a local hospital there. He is now in that ED clinic, and we are learning with him as we go. I do remember feeling just as you do now on the day he told me he wanted to leave - so anxious, frightened and unsure of what to do. Even though it was a crisis, I am so glad that I didn't wait any longer. So please, have a physical done. Pulling for you - and thinking of you too!
Registered: 1482371611 Posts: 62
Reply with quote #18
You've had great advice. It's so
Scary and so hard at the very beginning.
I'm worried about her dizzy spell. At this stage when she's lost so much weight I would take her in to see a doctor or to A&E. Better to be safe than sorry.
When you start refeeding any food that goes in feels great. It takes a while for you all to find the best way to require her to eat three meals and three snacks a day. We ALL know how hard it is. Keep posting and asking questions.
Are you getting help from CAHMS? (Not sure if you're in U.K.?).
In the meantime if she's not eating much and is dizzy again please do get her checked out
Registered: 1494357582 Posts: 202
Reply with quote #19
Ellen, you’re doing a great job! Keep up the great work. It sounds like you’ve already made good progress. Great advice from the posters above.
Registered: 1512291655 Posts: 4
Reply with quote #20
We took my d into hospital last Sunday. She was dizzy, unsteady and looked terrible. She actually asked to go in the end. For the first 2 days she didn’t eat a great deal more- even with the nurses supervising her main meals. She was given a clear ultimatum by her ED paediatrician 24 hours ago and has eaten everything on her meal plan since. We hope this means she will avoid an NG tube. She has continued to lose weight in hospital even though it is very warm and she is resting all the time. Her nursing observations are very abnormal, especially at night. She should be allowed out tomorrow for a snack and on Christmas Day for a meal and snack. We hope she can keep up her amazing progress. Her mood has improved as the food has gone in too, although we know the ED is there under the surface.... I think this was the right thing to do. We tried so hard at home but the rapidity of her weight loss made her medically unstable so quickly.
Registered: 1431767540 Posts: 1,953
Reply with quote #21
Just a quick question-she is under 24/7 watch at the hospital,yes?because if she isn't and weight is not going on then it should likely she is vomiting after meals and hiding it and exercising in the shower and in her bed. The girls on my ds ward would walk back and forth to each other's beds-to chat,but really to sneak in any extra steps they could.they hid food up sleeves and in waistbands and pockets.they spat out meds they were given.
None of this is obvious at first.and often we don't want to see it or believe it.i got to a point though where I had to accept that my d lied like a rug,even with all her symptoms,the exact same as your ds.
Please don't be afraid of an Ng tube.its reallly really important that your d is aware that if real weight-not just water weight from drinking before weigh in- isn't going on then the very next step is an Ng tube.thats life in ed world more often than not sadly.and you can't show they fear of it-you have to act like it's the best thing.the only thing that matters when anorexia is strong is that it learns that you will not be beaten.certainly not at this very early stage,because this is a long illness.
The stuff I'm telling you is hard won knowledge.even with an Ng tube they have to be supervised as they will undo the tube and syringe out the contents of the feed.make sure if your d goes on Ng feeding that no flushing syringes are left in the room.
Good luck with the next few days, __________________ Sotired42
Registered: 1284535839 Posts: 3,489
Reply with quote #22
Ellan it is great that for the last 24 hours she has been able to complete her meal plan. My D was only able to eat for some time if there was an immediate consequence of NG tube for not eating. I would hope that she is going to start gaining weight on this and that her observations will improve soon.
Since the plan is for her to have her snacks and or meal with you, I would recommend that you have an immediate consequence of going back to the hospital if she is unable to comply. She needs to know that she has no choice but to follow through. If she does need an NG tube it is purely because of the strength of her illness, not a failing on your or her part. She needs the nutrition urgently, how it gets in is really not of consequence at this point. __________________ 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.