Registered: 1506888917 Posts: 9
Reply with quote #1
I am new to the forum. I am hoping that someone can give me some guidance as I am feeling desperate. Our 17 year old daughter was diagnosed with an eating disorder in July this year. She immediately started "treatment" with our local NHS eating disorders team. This proved to be useless, and any motivation she had initially has faded away. She is now refusing to see any therapist, or to have any tests (eg bloods and ecgs) She is refusing admission to a mental healt unit and we have been told that we need to wait until she collapses and is taken to a+e before they would consider sectioning her. She has no interest in getting better or eating. We feel completely let down by the eating disorders team. She has never seen a psychologist and is not under the care of any psychiatrist. Her therapist has said she cannot help until our daughter wants to engage. We have been told there is no possibility of FBT either privately or on the NHS. We are simply doing what we have read about in Eva Musby's excellent book and guessing the rest. Her weight is plummeting. Does anyone have any advice? We live in Lancashire in the UK.
Registered: 1284535839 Posts: 3,545
Reply with quote #2
Welcome to the forum. Sorry that you have had to find your way here. It sounds like at 17 your daughter has been classified as an adult by your local team with the associated treatment theory that she has to engage with it. The problem with this is that many people who have eating disorders suffer from
anosognosia , so they have no way of appropriately seeking help. To make matters worse, there is a lot of evidence that that the earlier eating disorders are treated the better outcomes there are. What can you do? I would be working hard at using all leverage I had to get her into treatment whether she wants to go or not. I wouldn't ask her if she wants to get better, but would suggest drawing up boundaries around her so that her choices are limited to those that work her towards wellness. This includes access to money, phone, social events etc.. I would insist she continue to see your GP for regular assessments and weigh ins, bloods. For FBT I don't know if this would be available to you or not, the UK has a postcode lottery as to what is available under the NHS. What is available privately is very variable. Eva has some great ideas in her book, and insisting that your daughter eat is the right thing to do. Unfortunately she will need to be very sick before she would be sectioned under the mental health act, as is the case in most places, though she does not need to have collapsed. Taking her to A&E is always an option, if you have concerns, this includes things such as rapid weight loss, faintness or dizziness, refusing to eat or drink. __________________ 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: 1506888917 Posts: 9
Reply with quote #3
Thanks. She has very little in her life at the moment. She is off school due to the stress she was under, and she has made no effort at all to see her friends (she was very sociable prior to booming Ill).
She does still have her phone. In fact she spent all day on it today playing games. We have had mixed advice about taking her phone away. On the one hand it might bore her into accepting help. On the other, we have been told that it would be a bad thing because she might see it as a punishment. Does anyone else have experience of doing this?
We are having very little success in influencing her eating. She spends most of her time in her room. If she has decided she won't eat, she becomes cross if we tell her she needs to. If we continue, she becomes more and more cross until she is screaming at us. She has also started to be physically violent, hitting my husband repeatedly on one recent occasion. Since this occurred we have told her she needs to come and eat at the appropriate times, but backed off at the point where she is getting aggitated. The only saving grace is that sometimes she weakens and has a mini binge, although this is followed by 1-2 days of not eating at all. Any tips?
She was admitted voluntarily to a mental health unit last week, but discharged herself after a day. We felt really let down by the psychiatrist because he just told her that he could only help her if she wanted help. We are meeting him again on Tuesday, at which point we think he is planning to discharge her from his care. Does anyone have experience of a psychiatrist managing to engage an unwilling patient and get them to accept help? Looking at other people's posts, many people seem to have been inpatients for long periods. How are they persuaded to accept help when they know it is going to make them put on weight? ( this is the reason our daughter will not engage).
Registered: 1438737617 Posts: 1,508
Reply with quote #4
Does anyone else have experience of doing this?
Absolutely. Use whatever leverage you have. My daughter only got her phone, computer, internet time, etc. after eating. If she refused to eat, she was on complete bed rest until the next meal. If she ate the next meal, she could earn those things back. It isn't a punishment but a way to conserve calories. At this point she is eating less than she is burning off so you have to do something.
If she has decided she won't eat, she becomes cross if we tell her she needs to. If we continue, she becomes more and more cross until she is screaming at us. She has also started to be physically violent, hitting my husband repeatedly on one recent occasion. Since this occurred we have told her she needs to come and eat at the appropriate times, but backed off at the point where she is getting aggitated. The only saving grace is that sometimes she weakens and has a mini binge, although this is followed by 1-2 days of not eating at all. Any tips?
Keep at it. Don't let her skip meals no matter what. Let her scream and get cross with you but don't back off. If she becomes violent, call the police. Violence is not acceptable in any way so any violence needs to be dealt with swiftly to keep everyone safe. I had to call once and I'm glad I did. The next time my daughter tried to become violent, all I had to do was reach for the phone and she calmed down. If she won't come down to the food, take the food to her and sit in her room with her until she eats. You absolutely can do FBT with older kids/young adults. My daughter was 21 when I started FBT after a lot of totally ineffectual treatment.
Registered: 1436500021 Posts: 867
Reply with quote #5
So sorry that you have to join us here and that your daughter is ill. I have a question about the age of majority in the UK. Isn't it 18? Our daughter also was diagnosed at 17 and we were able to sign her into a treatment program as her parents and legal guardians and she could not sign herself out at that age in the US. Isn't it similar in the UK?
We felt really let down by the psychiatrist because he just told her that he could only help her if she wanted help.
The sufferer does not need to want to get well in order to be treated. And, it is very common that they don't think that there is anything wrong. And even if they say that they do want to recover, it can still be very challenging for them to eat enough and listen to the advice of everyone around them. I hope that your meeting with the psychiatrist will go well...can you ask him how he helps patients who are suffering from anosognosia? Your daughter really needs to have her vital signs being medically monitored by a physician if she is skipping meals, becoming violent and not eating for 1-2 days as you mention. I just made appointments and told my d. she needed to come and took her there. It was not negotiable. Kali __________________ Food=Love
Registered: 1284535839 Posts: 3,545
Reply with quote #6
I know there are different rules about age of majority and age of consent to medical treatment in different countries.
In Australia we tend to follow similarly to UK law, the age of consent to treatment is not defined, but is in fact based on ability to understand the need, risks and benefits of treatment. This goes along with a right to refuse treatment as well, so even if parents are requesting treatment someone under 18 can refuse to consent to it. __________________ 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: 1503822015 Posts: 44
Reply with quote #7
I take my D's phone. It does feel like punishment but I try to explain to her that it's not, that she has to eat and that as soon as she does, the phone is back.
Then again, after she eats she refuses the phone to punish herself for eating
I guess try and see?
Registered: 1435435970 Posts: 365
Reply with quote #8
I told my d she could have her phone WHILE she eats. I also spoon-fed her for months, while she clicked around. The leverage for eating needs to be extremely short-term. Nothing wrong with something that distracts and reduces tension--as long as she is eating while distracting.
Registered: 1452437794 Posts: 2,174
Reply with quote #9
Here are some details on Family Based Treatment. __________________ 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: 1452437794 Posts: 2,174
Reply with quote #10
I think this is brilliant, it was made by another parent advocate that has kindly allowed me to share.
Many of us (not all) here follow (or have followed and been successful with) the Maudsley approach (FBT), which follows these guidelines:
1. You prepare meals
2. Do not allow your child in the kitchen during meal prep
3. Your child should not go grocery shopping.
4. Toilet before meal and no toilet for at least an hour afterwards.
5. If purging is suspected, use an open door policy in the bathroom, or have them count or sing whilst in there. And no flushing
6. Do not negotiate - whatever you serve has to be eaten
7. Use whatever leverage you have - phone, Internet, tv - whatever they hold dear is to be removed if they refuse to eat, until they have eaten. If they're older and are not financially independent, this is your leverage
8. Separate the two - Your child is not the ED
9. Detach yourself from the situation during meals. Do not get drawn into emotional discussions. THIS IS NOT UP FOR NEGOTIATION
10. Remember that your child wants to recover - the ED is stopping them
11. Your child needs your permission to eat. They need you to stand up to ED as they do not have the strength to do so themselves
12. 3 meals and 3 snacks per day (supervised) - do not deviate from this. Add time limits to the meals (as a guide/goal!). Ours (and the hospitals) was 30 mins for meals and 15 mins for snacks. In the early days this could extend A LOT. I made my Ds meal times the same as they'd be at school so that when she transitioned back to full time it would be easier and less anxiety provoking.
13. High calories are needed throughout refeeding with lots of full fat dairy. Some need as much as 6,000 cals with hyper metabolism, but the norm would be minimum 3500-4000 cals (for you to track not your child)
14. When they know you will not negotiate, I promise you will see the weight lifted from their shoulders... If only for very short periods
15. BE THE CAGE that keeps ED away from your child
16. When food is eaten be mum / dad again and have cuddles if they'll let you
17. 24/7 supervision - I slept with my D for 4 months - this will protect against them purging through vomiting or exercise. Many patients will exercise alone at night for hours on end when nobody else is awake.
18. All sport may need to stop in the early stages, and
for those who compulsively exercised this could be long term.
19. Be consistent, consistent consistent!
20. Don't congratulate them after a meal or say 'well done' - just cheer inwardly! Likewise when (for girls) their period returns!
22. Recommended reading: 'Brave Girl Eating' by Harriet Brown
23. Be prepared for resistance, and lots of it! You will find your own way to manage this, but NEVER back down. Any compromise is a win for ED. Remember, you have to see the beast to slay beast!
24. Making decisions / choices is extremely difficult for them (painful to watch). This is true in areas outside of food too. If you've tried to hand over some control of a meal or snack and notice that they are struggling, that is an indication that it is too soon and that you need to be making those decisions for them.
25. Sometimes distraction helps during meal times. That can come in the form of games,TV, music. Whatever it is you control it and it only continues with eating.
26. Lean on us - you have 24/7 support here as FEAST/ATDT is international
27. In some cases FBT isn't an option, generally if there are comorbids such as ASD and BPD (Borderline Personality Disorder) . It may just be that FBT needs to be tweaked, or that a different approach is needed. There are many here who have found ways to work around those comorbids or who can advise on an alternative approach which worked for them.
Hope this helps! Best of luck!
__________________ 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: 1209507043 Posts: 2,667
Reply with quote #11
I am sorry you have been so let down by the team you are under. However, my understanding is that there will be a consultant psychiatrist around in any eating disorder service so it is maybe that your d has not seen (or been allowed to see) the psychiatrist with responsibility for your d's care. With regard to the IP stay - you need to put pressure on your d yourselves. She does not want to put on weight because that is what the illness is about. Unfortunately there is no recovery without weight gain and you may find it helpful to start using mantras such as 'food is medicine' and telling her that she needs to eat regularly. If she refuses, particularly if she refuses fluids as well, then you can take her to a and e, even if she hasn't collapsed. The sooner you get your heads round the illness the easier it will be. Part of the difficulty is that the behaviours are distressing for you to witness and you maybe don't yet understand that this extreme resistance is absolutely all part of the illness. If you are giving your d the message that it is ok for her not to eat - then she will use that and the illness will see that it can 'get away with it'. So both you and h have to announce to d that there will now be a new routine and that she will have to start coming out of her room and eating six times a day. If she screams and starts getting violent, try and stay calm and let her know that you will call the police because you will no longer tolerate this kind of behaviour. If you both stand your ground and don't show any fear (easier said than done but it is essential that you don't allow her to see that she is 'getting' to you) you may start to be able to turn the situation around. The illness is taking advantage of your own anxiety and lack of knowledge about what to expect and what to do. It is not healthy for anyone to be allowed to sit on his/her phone playing games all day - can she do any school work? Do you have any contact with the school at the moment? What does she want to do in the future? What were her plans and dreams before she became ill? It is important that, while trying to get weight back on her, that you try and focus on getting some kind of normality back into her life as well. It may help for her to have the eating and weight gain put in the context of her becoming 'normal' again. You have certainly been let down - but try and argue for her to be kept under some kind of medical care or supervision. She needs regular weighing to see that some progress is made. I find it totally unacceptable that they are saying that they cannot do anything while d does not want to engage - this just shows how behind the times they are in their understanding of what they are dealing with. __________________ Believe you can and you're halfway there. Theodore Roosevelt.
Registered: 1407077761 Posts: 24
Reply with quote #12
Have you researched Breathe in Preston? It's a non NHS eating disorders service which appears to be successful. Might be worth a look.
Registered: 1452437794 Posts: 2,174
Reply with quote #13
Given that she is 17, I would do all I could to get her into recovery asap. This is a steep learning curve for parents, and we are instrumental in their recovery. I advise you to read as much as you can about this and learn how to treat her. Things change legally at 18 and the situation can get way worse. She needs to be re-fed, she has a brain illness that causes her to have no insight. Food is her medicine. Eve Musby does private consultations by the way, also there are other ways to get support. I just googled ED carer support in Lancashire and came up with this... This is an extract from Prof Janet Treasures book and is excellent! https://www.lancashirecare.nhs.uk/media/Publications/Eating-Disorder-Service/Central/Carers%20Toolkit%2028th%20August.pdf __________________ 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: 1452437794 Posts: 2,174
Reply with quote #14
and some more here
http://www.lancashireseed.btik.com/CarersAdviceInformationClinic http://www.breathetherapies.co.uk/ http://www.eastlancshealthyminds.co.uk/details/directory/eating-disorder-service/215/ https://www.facebook.com/seedlancashire/ https://twitter.com/SEEDLancashire/status/842061443914702849 __________________ 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: 1268143852 Posts: 1,395
Reply with quote #15
It makes my blood boil, this UK postcode lottery - don't get me started on the subject!!! And all that stuff about having to "want to recover" - we heard it all, too, from our UK CAMHS team. At times (most of the time!) I felt as if it was just me alone against my son, his ED and the treatment team. Then I found this forum and the amazing support I received here.
But it's no substitute for proper, evidence-based treatment which you should be entitled to but which is so thin on the ground in some areas of the UK. I wish I could offer some useful advice. Looking back (my son is now recovered, thankfully) I wish I'd gone down the 'chain myself to the railings' route and refused to budge until my son was given proper treatment. But that's easier said than done. It really is. And I also know that A&E isn't a brilliant option in an emergency because, all too often, they haven't any ED training and, anyway, how do you get a (in our case) violent child to A&E? Especially when they are denying that there's anything wrong with them. One of the most helpful and active mums on this forum (who, tragically, is no longer with us due to cancer) had issues with her local ED service and so she enlisted the help of a very supportive GP and worked with the GP to get her D through the ED, so it is possible to 'go it alone'. Is this something you could do? The removal of phones, etc is good advice. Is there anything else you could use as leverage? Without it appearing to be a punishment? I remember saying to my son one day that he could protest all he liked and be violent, but I wasn't going to stop working to save his life and even if he felt that his life wasn't worth saving (as he did much of the time - the self hatred, etc) I was going to push him forward towards a proper, fulfilled and happy life. The life he has today, thankfully. Oh it is so punishingly hard, though, it really is. Huge hugs and keep posting, won't you? __________________ Bev Mattocks, mother of 24-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
Registered: 1398657817 Posts: 427
Reply with quote #16
I heard a session from Dr. Craig Johnson, an expert on ED. He talked to parents about loved ones with ED as being literally psychotic. That while their brain is starved, they have delusions that don't match reality about their looks and weight. He confirmed they are like a patient with schizophrenia.
He even said to one dad - "Can you reason with a schizophrenic and tell them, 'Stop having these delusions!'" We all laughed, but it really hit home and made my H and I finally get it. He said that is exactly what an ED patient is like - they will not respond to reasoning, logic, begging, etc. They are delusional while malnourished, which is why the first step is to get their weight up and their brain back "online." There's also a strange component of ED where the person feels guilty and if they are "not good enough" if they do give in and eat. They hate themselves for being "weak" which is so strange, which makes sense why she punishes herself afterwards and refuses to take the phone. While she's still under 17, I would not wait for her to engage; she probably won't ever choose to eat. She won't choose to get well because it's really really hard, and it's become part of who she is. While she's underweight, she is not in a mentally healthy position to be able to make that choice herself. Please be aggressive in confronting this while she's a minor. When she's an "adult" parental leverage loses a lot of power. __________________ 19 yo D. AN - since about 15 years old. WR quickly - but the last four years have been tough. Since Sept. 2017, two residential stays, now in IOP, fighting a relapse. ED is hanging on, mental state not great, can't get her to remain at a weight long enough or high enough to see mental healing. She's on a gap year that will likely now turn into two.
Registered: 1506888917 Posts: 9
Reply with quote #17
Thank-you for your replies which have been fantastic - far more helpful than any professional so far. In our case, what makes it all the more agonising is that we have no clear guidance form the professionals as to how to move forward and seem just to be going round in circles. To have such clear messages and advice from this forum does a lot to ease that.
Since my original post we have been again through the circle of the community service saying she is too ill for them, referring them to the hospital sho then say she is not ill enough (to section - she won't go in voluntarily). I am thinking that the only option open to us is FBT. The problem is though that our local EDS say they are "unable to support this". The individuals in the team are well meaning enough, but do not seem to have the confidence and skills required for it. The service has no doctor in it. SO I am thinking about 2 options - perhaps we could just do it ourselves anyway. Is anyone able to let me know what specific things the professionals have done to help them with FBT? How much contact do you have with them during FBT? Do you think you could manage it without FBT trained professionals? We have a nice GP, a CBT therapist, an eating disorders nurse and an eating disorders dietician who would help us. I realise it will be very variable, but how long have you found it takes to get through the Refeeding stage?
The other option I wonder about is whether we could apply to our local clinical commissioning group for funding to pay for a private eating disorders service to provide the FBT support. Does anyone else have experience of doing this in England?
The other real frustration I have is that there is no psychiatrist supervising her care. She saw a general psychiatrist in hospital who simply told her she could go home if she wanted to, assessed her as having capacity and discharged her. What role has your psychiatrist played? Do you think it is necessary to be supervised by an eating disorders psychiatrist to do FBT?
She has started to say some scary things like "what is the point of living? I have never been happy" (she has). She has not mentioned any plan to harm herself, and has never done so, but the weariness with life is a bit scary. I know anorexia can do this, but I also wonder if she is depressed and would benefit from antidepressants. Maybe depression contributed to it in the first place? Has anyone else found that antidepressants have helped?
Many thanks for all your wise words and encouragement. I am putting your ideas into action eg joining our local charity, SEED in Preston.
Registered: 1487511003 Posts: 44
Reply with quote #18
We've done refeeding with the help of FBT therapist, but I feel that we mostly done it on our own. I can tell you what T helped us with was: at 1st appointment she made the refeeding process sound more professional and the only choice to my daughter, she was the one to weight her every week. I think it's possible to do on your own. Especially with the help of this forum. You need to make sure you are feeding enough to gain every week. It seems that was the only thing FBT did (weighing her weekly). I am also wondering what else FBT trained therapist should be doing to help with refeeding. Also, my daughter was also saying things like "everyone would be better without me", this kind of mood got better after a first few weeks of refeeding.
Registered: 1209507043 Posts: 2,667
Reply with quote #19
Do you have a good GP? If you can get the GP on board to give your d a good 'talking to' about the seriousness of her illness, and to back you in telling your d that she has to put on weight and follow your instructions around eating - and if a practice nurse could do a weekly weigh-in, you would have a team which could work. We had a great GP but he wanted to do the weighing himself - and he was too 'nice' in telling d that she knew what she needed to do. She did - but she couldn't do it at the time, i.e let me take over the decisions around what she ate. The practice nurse needs to be the 'bad guy' - getting angry if d does not put on weight. If this arrangement could be created, there would be less of a need to use specialist services. But the two clinicians need to understand their role. If you have a good relationship with one particular GP, I suggest you make an appointment to see him/her individually and explain your new knowledge and understanding around the illness (no recovery without weight gain) and ask for their help. If they support you - it would be a pretty cheap option. A community dietitian could also be brought in at some stage. Just a suggestion. __________________ Believe you can and you're halfway there. Theodore Roosevelt.
Registered: 1502029210 Posts: 86
Reply with quote #20
Hi There, we are refeeding out daughter along the lines of the Maudsley Method - there are no FBT therapists here so I basically printed off a Maudsley FBT teatment manual I found online, ordered and read How to Help Your Teenager Best an Eating Disorder. I then found a GP which was willing to support us through this (back me up re re-feeding 3 meals and snacks etc) and to manage medical side of weekly weighing and heart rate and initial bloods. I read as much as I could, phoned many, many psychologists and after one which didn't work out ( my D refused to say one word in 2 one hour sessions) we found someone that was willing to include me in all the sessions (my D is 12), and was supportive of what we were doing at home. We have met with a psychiatrist once and to be honest, I was underwhelmed by her blanket approach... still up for debate if we will go back. The psychotherapy, and the support it brings, is of huge value to us, however refeeding my D and getting her WR is the most important task right now, and as the leader of this mini team, it is something I ensure we are all on the same page about... my advice, read lots and just start, the rest will fall into place and you will learn quickly what works for you. Xx
Registered: 1496061527 Posts: 1,043
Reply with quote #21
to answer your question shortly: you surely can do that without a FBT trainer. Most of the time you have to do that on your own anyway. It is easier with help, but if you don´t have one that is no need. Our FBT trainer did´nt help a lot with refeeding tips - that was nearly 100% this forum. So this is available 24 h a day and that is a treasure. What she helped us with was hope. Giving us that feeling that we are doing the right thing. Helping us to tell our d that we know what we do. We saw her about 12 times in 5 months. Hope is something you can get here for free! Some FBT therapists offer skype sessions - think about that. If you have a nice GP and a dietitian and they are open for FBT than you have definitely more than we had. Worth a try! You have nothing to lose! If the psychiatrist is not helping you, get rid of him. ED is a genetic-biological based illness that distroys the brain because of malnutrition. She does not necessary need psychotherapy, she needs food. Psychologists who doesn´t help seem to be a big problem. ED and malnutritions leeds into depression. She is seperating herself, sees nothing nice in her life. That is sadly normal. But it gets better with every day when she gains weight. In our case we see this depressed phases after WR only when our d has not eaten enough. Get her to eat (I know that is easily said but done) and you will get your nice, charming, lovely and lively daughter back. She is still in there. What you need at first: GP controlls her blood, heart and body functions. Maybe you have to do something medically. GP controlls her weight weekly. Dietitian makes a plan for 3 meals and 3 snacks. Min 3000 calories, it might be more needed. Increase that until she gains weight. Get help from a friend or a family member to take over when you are down. That will come. Do something nice for yourself regularly. Keep yourself fit and confident. You are her rock and her mirror. If you break down, everything is lost for her. Keep on going. You found the best therapy. Don´t waste time. Start refeeding today. There is no right way. It is try and error. Every family/patient is different. But when you once found the right way for your family, that is a great power. Tina72
Registered: 1492110966 Posts: 338
Reply with quote #22
You have received really great amazing advice so far. Bewell, Rose08 and Tina72 seem to have "hit the nail on the head" YOU ARE THE THERAPIST!!I had to ask our therapist after 2 months if we were doing FBT! I really had no idea. Melstev notes that the medical team can be the "bad guys" that is great! We as the parents get enough flak! This helps you get the job done without being blamed. This directs anger away from you. You have to do the work of refeeding ( such an apt term!). The therapist we had helped to say I was doing a good job feeding. But I had to do it ,they don't live with me to help. The doctor helps with the medical side and medications as required. I felt that the doctor was good at supporting me when I said we had to increase food or add different things. I told the doctor privately, my plans for the next week ( I called the team dietitian to relay the message to the doctor) and had her say to my D that she thought we needed to increase or add ice- cream, donuts, more cheese etc.. ( whatever I needed to do that week) then it seemed that it was not my idea but the doctor's. Then my D would accept it. After a few months I would just say it in front of the doctor that we needed to adjust the meals (adding extra or different things) and then the doctor, in front of D would just agree and articulate that I was the boss. Then D would accept that too . We have a great pediatrician who specialises in ED here so that has been so good for us. I did the research here and do not find that I am specifically doing a manualised FBT. I was just told by the FBT team to feed! They did not even give me helpful tips on high calorie foods, all that came from FEAST. Ultimately, if not in inpatients, I feel it is "us" the parents or caregivers who do it with the support of the team. Refeeding takes a while. It takes time for us to learn how to do it. This includes figuring out the food, and the way we will handle issues at the dinner table as they arises We are at 6 months from diagnosis and one month at WR. But I am still feeding her a lot. She has to grow more and we need to fuel that. But I must say that at about 3 months it was noticeably easier to feed her. Less fighting and I had developed a stronger stance. We all find our way.. "One size does not fit anyone!"
Registered: 1505646374 Posts: 8
Reply with quote #23
This snack list was given to us recently (after 4 months). 3 snacks and whatever you can manage during meal times. List A+B+C during snacks. What did she eat when she was a healthy weight? Could she eat similarly to start with and build it up? Don't be afraid to look at the ED in the eye. We are with you ♥
Registered: 1436500021 Posts: 867
Reply with quote #24
I wonder why they have semi skimmed milk on this snack list, it seems odd. We were told to use only full fat dairy products. Kali __________________ Food=Love
Registered: 1505646374 Posts: 8
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My d refused todrink full fat milk because it was a too strong taste. I guess they want to give an alternative. I didn't believe when my d told me it was on the list as well.