F.E.A.S.T's Around The Dinner Table forum

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Jasmine1
Going through hell at the moment. My daughter is 11 and has been restricting food for the last 4 months. During that time we have seen Drs and nurses and were basically told not to make a fuss and she didn't meet the criteria to be referred. We managed to maintain her weight at 35kgs which was really hard to do but then she started restricting even more and eating less and less. Then we found out she hadn't really been eating at school either. We had an emergency appointment with an ED dietician who weighed her and she was 32.9 and she sent us straight to hospital. This was a week and a half ago. She was admitted straight away as her pulse and BP were low. She started off making good progress as she was desperate to come home and was put on bed rest and an eating plan. However she hates the hospital food and is a really fussy eater. I am not allowed to bring in the home cooked food she likes as it has to be monitored closely and HS reheating issues. In the first week she only gained 0.2kg but her pulse and BP went up but then she started eating less and less and refusing more.
So the eating plan was increased last Friday and she went ballistic. It meant now if she didn't eat she would have fortisip. She basically said she was going to starve herself to death and flipped out. But after about 2 hours she calmed down. So since yesterday she is on this new plan but is refusing a lot of the meal and also refusing the fortisip and once again her pulse and BP have gone down.
She was meant to be coming home this afternoon for 2 hours and my hub went to collect her but she hasn't eaten lunch- despite the strong incentive for her to come home and now the hospital might not allow it as her pulse is too low.
I am in floods of tears and my heart is breaking. Haven't slept all night. I am so scared she is going to die from this. I can't see any way round it other than sedating her and NG feeding which the nurse said could happen this week if she doesn't eat.
When I see her now my heart is breaking seeing her starve herself like this. I just can't keep strong for her as I am just breaking down in floods of tears and it upsets her to see me worry. I am trying so hard to be positive for her sake and encourage every mouthful she eats and say well done - but I know she is barely having enough to stay alive.
But I feel like we're in a viscious circle of she won't eat the hospital food but I can't bring in the home food she likes.
In floods of tears as I write this as I can't see anyway out.  At first when she went in I felt relief that finally she might get better and all the help will be there - now I just feel we are going downhill again. Seeing the ED nurse first thing tomorrow.
Any help and advice appreciated. I am terrified of NG tube but will it be the thing to actually help her? really really don't know what to do and can't stop thinking she is going to die from this.
How the hell to keep strong for her



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.
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Sadmom
It's so stressful in the midst of the worst Jasmine, but stay strong for your d, because she needs you. If she needs to be tubed to gain weight, then that is what the docs will have to do for medical reasons. Righty now, it doesn't seem like It will get any better, but slowly, it will. Just have the strength and the faith.
Warm thoughts for you and your d.
Sadmom
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Torie
Jamine - So sorry for the dreadful ordeal you are forced to endure.  I have read others say that when the chips were down and it was "eat or get tubed, now," that some are finally able to eat.  And others turn out to need the tube and are helped greatly by it.

Your d is in a hospital, so she is safe in the sense that they will not let her vitals get too out of whack.

She needs you to take care of yourself.  I know I know that seems impossible, but you need to take care of yourself FOR HER.

Sorry for the low quality of this post.  I have no time right now, and I'm having a horrible day myself.  But hang in there because it does get better.  (Although my day is "horrible," that is a relative term, and in comparison we are much much better than we were in the darkest days.)

Hang in there!!  You -  and she - will get through this.  It does get better.

I'm editing this post to reflect the sensible comments by Red.

Have you seen the video made by forum member Eva Musby?  I have found it tremendously helpful:

 

Hugs
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Red
I found it wasn't possible to stay strong, but that it was possible to maintain the façade in front of d.  As far as she was concerned, we were calm, with absolute faith that we would help her recover.  Alone, I was a crying/screaming/rocking/monosyllabic wreck! It took us a while to arrive there, but it did make a big difference to d and her recovery.

It sounds like where she is at least has some idea of increasing her intake.  Do they have a 'Plan B'?  It's awfully difficult to get nutrition administered nasally to ed patients in the UK, I believe.  Has she been given a care plan?  As her parents, you have a right to be informed of the treatment path that is being aimed for.

As for her not liking the hospital food, do you honestly believe that she would eat more if it were home cooked?  If that is the case, why was she restricting so much at home?  I don't say this to be awkward, but it is much more likely that she fears food/eating, rather than dislikes the food she is being offered.  This is the medicine she needs: to be able to eat regularly, properly and without fear.

Recovery is tough, but it is absolutely possible.  Hang on in there.
The future is not set; there is no fate but that which we make for ourselves.

"Not my daughter, you bitch." Mrs. Weasley
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Jasmine1
Thanks for your kind words. It really helps and means a lot to hear from people who truly understand this illness. The food she was eating at home was getting less and less so yes of course you're right - it is her fear of food. She had a better day yesterday where her eating improved (but still not enough). We have a big meeting this morning to talk about her plan. She is on a general paed ward at the moment as they need to get her physical health better first before all the psych helps starts. There is an ED nurse who is visiting almost daily. Managed to keep it together when I saw her and really encouraging about how much she is loved and how hard she is trying and how we're so proud of her (while inwardly screaming) Have hardly slept again tonight. I think we are at the stage where it could go either way - if her eating gets better and her physical health improves the plan will be to come home - if it continues to get worse they will be looking at NG tube then possible residential unit out of the county as no beds in our county. Because she is only 11 the ED nurse prefers her at home but of course it depends on the illness . At the end of the day all we want is for her to get better and will do whatever it takes. Thanks so much again- every tip helps
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.
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Bottle
Hi Jasmine, I see you are in the UK like us. Firstly I am absolutely STUNNED that you have an ED nurse available to visit your D daily on a general paeds Ward! Brilliant! Or experience of general paeds was negligent and whilst self harming and suicidal ideation and only on a bit of Ensure she was refused psych assessment so you are one step ahead of the game there potentially. My daughter begged for a tube and so they tubed Her, Trained meto feedherAnd Sent us home. I sought a referral myself through a team that had been involved with her about a previous episode of difficulty.
She's been tube fed for 7 months now and is only just starting to be able to experience food at all which is very exciting for us. The tube obviously isn't what we wanted but it has been easy to Manage for D and enabled fast weight restoration and maintenance while her other difficulties have become more obvious and better understood. Lots of her other symptoms have receded as her brain has healed and we have almost been keeping her safe on the tube knowing that the eating would come last. Her case is much more an ."eating disorder as part of Pervasive refusal" and so FBT has been inappropriate for us. All I'm saying is that it would have been great if she hadn't needed it,but she did and we have managed it in the community with no problem and community nurse support.
Sorry about typos, I'm on my phone!
Bottle
D2 RAN as part of Pervasive Refusal Syndrome with a history of not walking for a year and being non verbal for a short while too. Considered to be Aspergers by everyone that has worked with her and by us but still awaiting a diagnosis that'll help us access support services she needs.
D1 recovered RAN and D3 doing pretty well considering the mayhem around here!
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lisaNJ_US
Jasmine1 -- hang in there -- I hate to say this but you may have to travel a longer road than you anticipated but hopefully you will get your D back.  My D was 10 at diagnosis -- that was last year.  She was medically at risk but did not get hospitalized. We were able to get her to eat at home through the magic plate. It was tough. There were meals we'd be sitting at the table for hours until she finished eating. What we learned through this forum is that LSUYE - life stops until you eat.  We tried many techniques to get her to eat. She was a soccer player and had to stop sports for awhile.  We allowed her to watch videos at the kitchen table if that would make meals go better. I am not familiar with the use of an NG tube to gain weight nor the methods of the UK health care system.

We are one year past diagnosis and life is so much better - not perfect but better.

Lisa NJ Mom to daughter dx AN (Nov. 2013) at age 10. WR April 2014. ~There is light at the end of the tunnel.~
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Jasmine1
Thanks again guys! She was admitted to hospital on the 10th Dec - 32.9 kgs and when she was weighed this morning she has lost 0.6kg since her admission - 32.28 and her pulse was even lower. So basically she has gone downhill since being in there. Mostly because she has been refusing the food and fortisip. The Dr this morning wanted to insert a NG tube there and then but she begged and pleaded and is now on her very last chance. She has to follow her exact eating plan which includes fortisip drinks if she refuses any part of her meal. If she doesn't have the fortisip (as she has been refusing this) she is to be tube fed straight away - no ifs or buts or arguments or bargaining. It was made very clear to her. So since then all of today she has followed her eating plan so far and has had the fortisip so fingers crossed this has scared her enough to make a difference. She is on complete bed rest. As long as we're not talking about food her spirits are high, even though hub and I are wrecks! I am hoping that maybe now she has been backed into a corner of eat or tube maybe she will actually now eat. But as Lisa NJ says I am expecting it to be a long hard road with many bumps and twists and turns. It truly is hell but it is inspiring to hear some positive news of how your children are better a year on - as sometimes I just can't stop thinking the worse.
Bottle that is great news about your daughter just starting to have food again - wishing you the best of luck
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.
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anotherbite_CAN
Hi Jasmine-  this is a horrid time, really, nothing makes it easier for us (it is heartbreaking no way around it) but some things can make it easier for our kids.  I really do believe it helps them to think that we are confident and steady through requiring full nutrition no matter what  (even if we are quaking in our boots and crying when then can not see us).

My daughter was also hospitalized when she was 11.  She went in when she was 10 actually and spent her 11 bday in hospital.  Our story was quite similar...I noticed something amiss but the doctor kept assuring all was well.  She got worse and began to restrict more and more.  I found the forum on weekend and read everything and then told her that full nutrition was required and whether it was at home or at the hospital it was going in some how.  She then stopped eating full.stop. and I took her to hospital each day until she was admitted.  I kept telling her that I loved her and that as her mum it was my job to keep her well and that full nutrition had to go in each and every day and there were 3 options 1- she could eat her meal; 2- she could have liquid meal replacement for the equivalent or 3- the NG tube.  

Don't be afraid of the NG tube.  Sometimes the anxiety is so so high that they need to have there be no other option.  My girl did have to have the NG tube a few times and the staff was very calm and loving and it was presented as just one of the ways that nutrition could go it.  It was all done very matter of factly....the main point was that full nutrition had to go in an we would support however that happened.  

Food is medicine.  It will make a difference and you will get your girl back.   My girl is 14 now and in a solid recovery (typical, happy very social chatterbox of a girl).  It took a while (as we were feeding through the growth years but recovery is there to be had).  Reading the forum helped me stay strong...getting a good sense of what to expect and how bad it could get helped me plan and prepare and not feel overwhelmed.  I read through MEC's past posts (her daughter was 9 at dx) and Mamabear's (11) and Amoma's (10) and Red's.  The book "Give Food A Chance" by Julie O'Toole was really helpful too.  

Here is a bit from a post I did some time back on the NG tube  (Link to full post):  
  Once she began eating with me 'all life stops' was workable but we needed to get her 'over the hump' and the ng tube did this.  I don't know if you are working with a medical team...if you are might you be able to discuss using the ng tube?  As your d is eating with you and others you may find that she responds to 'all life stops' and you may not need the tube.  My d needed her back up against the wall.  The ed voice was so strong that she needed to feel there were NO other options.  The few times she was able to talk about it she would say to me "mum, it is telling me not to....you don't understand, I can't!"  She found the tube unpleasant but not horrible.  It wasn't 'fear' of the tube that enabled her to eat (and I think this is key) it was knowing the food is going in NO MATTER WHAT.  Up until that point 'not eating with me' was an ace in ed's pocket.  It meant she could feel that she maintained an option of not eating.  Even though she was eating with others the idea that she had an out was feeding the ed and keeping it strong.  
D dx at 10 years old in June 2011. She is now 16 and happy and healthy.  We were IP for 8 weeks and then refed at home for what felt like forever.  We chased vertical growth for years...as is typical for the age.
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trusttheprocessUSA
The young ones get sick quickly and it is terrifying. Food is her medicine and the longer she starves the more out of control(wild behavior) her brain becomes and her heart weakens and beats slower etc.

My son was 12 needed to be hospitalized and an NG tube inserted. He was given olanzapine medication that reduced the ED voice in his head. This helped in 2 ways, it saved his life and got steady nutrition in him and it also served to let him know that the consequence of not eating would be an NG tube - every time it would be needed to save his life.

She needs help from you, her mother. You are the best resource for her full recovery. You need to project that your love for her is more powerful than the ED in her head. Even if your knees are shaking. She needs to be medically stable - then the long hard work of re- feeding her and keeping her fed begins. She will come home after stabilization and you will need all of your strength.

While she is in hospital do crafts, puzzles etc. Keep her mind busy. You will need these type of distractions at home also.

I hope she keeps eating if not an NG tube is not the worst thing.

Stay strong.
Son diagnosed @ 12.5 yrs old with Severe RAN 2/11. Co-morbids - anxiety, Active restriction for 3 months. He stopped eating completely 2x. He needed immediate, aggressive treatment from a provider who specialized in eating disorders, adolescents and males. We got that at Kartini Clinic. WR since 5/11. 2017 getting ready to graduate slipping lost 8lbs. Fighting our way back.
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Trytrytry
I second, third whatever the comments above. If you not been in a hospital much previously the thought of the tube sounds terrifying, invasive punishment but I have had many for a medical illness so can give you personal experience - it can be uncomfortable when inserted but if she fights it will be more unpleasant. The first night it is in you notice it and I would describe it as an annoyance but once if has been in a day or 2 you can't feel it and find a position coming it of her nose where it is comfy. They do need to be cared for and flushed so as not to get blocked and need reinserting but I found that if reinserted down the same nostril, the second, third etc insertions become less uncomfortable almost like the passageway is there. Just some practical info to lessen your fears of the tube.
I want a realistic dr and team, not someone who says what I want to hear and not a 'touchy feely nice' dr that doesn't have success.
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Jasmine1
Thanks so much - I can't begin to tell you how valuable every word you say is. It really helps.
Well yesterday she ate the most she has in months. I think her fear of the tube might be more than her fear of food. I think as well maybe she realized she is going to get nourishment no matter what so it's up to her whether it's by mouth or via her nose. She even ate her ice cream dessert which was amazing. So she completely stuck to her meal plan C and if she left anything at all she had a Frusebin. So I am hoping we might have turned a corner. However I know this illness is not always as simple as that.
I think inserting the tube will be hell as she is terrified. Last week when they upped her from meal plan B to C she went nuts - banging her head against the wall, attacking us, throwing herself on the floor, saying she will never eat or drink again. So I think that was one of my worries of her being held down and sedated. BUT - at the end of the day I also know her life has to be saved no matter by what methods. Just about to visit again this morning and just hoping and preying we will have a good day. It literally is one day at a time at the moment.
Thanks again ladies for sharing your knowledge of this terrible illness and wishing you all a Merry Christmas and better times in 2015
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.
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Foodsupport_AUS
It may be a fear of the tube that is keeping her eating, or it may be the sense that there is nowhere else to go. Food is going in no matter what. Unfortunately it has taken them two weeks to get to this point. I am sure there will be some bumps along the way but getting her fed fully is always step 1 towards recovery. 

You are strong enough to support her through this as frightening as it is. 
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.
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mec
My daughter was sick from 9-11 and is now a beautiful 18 year old living a full life free from this disease. She has told me that she Tarted eating because she realized that there was no other choice so sheikh as well eat. She also fought us like a wild animal backed into a corner but after every time she ate things got better. If was literally one spoonful at the time that saved her. My girl also age because plan B was the NG tube. There were a few times when I dialed the T # and then she sta rtes eating.

If your d is allowed to c
21 year old daughter who was DX with RAN at 9 years old. The work of recovery is ongoing. 
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Trytrytry
Well done she ate a days meals. Try to distrct her, she is probably internally freaking out. Meds have their place and the issue of sedating is tough but watching the alternative and how ED is torturing her, I had days where my d was sedated, and others where I wish she was, whether it makes a difference in the long term, who knows but when she was pulling her hair out in clumps, bashing any body part against a solid object to the point of breaking bones and using up sooooo much energy in these anxiety driven rages that would be full cardiac workouts for hours at times, I felt at least some sedation gave her some respite and the team also noticed regarding her weight, if she was eating the same calories, on the weeks she was sedated she gained, when able to rage for hours with the calories still going in she would lose weight. Don't under estimate the amount of calories burned through rages, it is like letting them exercise whilst on bed rest.
I want a realistic dr and team, not someone who says what I want to hear and not a 'touchy feely nice' dr that doesn't have success.
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