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

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Mishka
i haven’ t posted on here before but I am desperate for advice and what to do.
my D was diagnosed with anorexia nervosa on July 2nd at an eating Disorders clinic and we are doing FBT and having weekly visits with a family based  therapist.  It has been a challenging summer but we were able to get my D up to her restored weight.  Once we got her there the therapist decided to give D some independence with snacks and lunch to prepare her for the start of school.I still prepared everything but we were to give her more independence during eating her snacks and lunch.  Her weight has dropped 4 pounds since and that has only been about 3 weeks. So school started this week and she was starting a new school.  She is 16 and in grade 11.  She wanted to switch schools as she wasn’t enjoying the school she was at. So we allowed her to do that.  The first week of school has been terrible.  She is extremely anxious, she even fainted the second day and an ambulance had to be called to the school.  The cause of her fainting was prob due to plus plus anxiety. She has only been at school one full day and one morning this week.  
Her eating disorder behaviour symptoms have been out of control this week.  She is holding food in her mouth for extended periods and doesn’t want to swallow the food .  This chewing of her food has been going on for sometime but getting plus plus worse. The excess chewing of her food causes her to throw up at times and she has also developed thrush due to holding food in her mouth.  Today at lunch in the parking lot of the school I thought she ate her sandwich and she turned and I saw half her sandwich in her sweatshirt pocket,  I also noted my dog chewing on one of her sweaters this afternoon and realized she had a piece of processed turkey and a muffin in her pocket.  That would of been the food from yesterday’s lunch.I then investigated further and found half eaten bars in the couch.  We were at the pediatritian yesterday at the clinic and she said to go back to strict monitoring of her meals and she was not happy about that at all but she did meet me at my car for lunch today but that’s when I found the sandwich in her sweatshirt and she threw up because she couldn’t swallow the green grapes.  She said she doesn’t like the skins on the grapes. 2 weeks a go she had no problem eating grape skins or bacon but will pull fat off bacon and spit out the bacon.  Bacon used to be one of her favourite breakfast foods. My D takes at least an hour or more to eat her meals and half hour for snacks.  We see our FBT early next week but I honestly feel like we are falling apart here and am very worried.  I thought things were improving but at this moment they certainly are falling apart. I feel like she has given up and I’m guessing she doesn’t like the progress she has made.  She doesn’t know her weight but knows she was weight restored.  Sorry for this long message but hoping for some advice. This is such a complicated illness and so hard to understand.
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kazi67
Hello Mishka
welcome to the club no one in their right mind would ever wish to join 
I hope you find support and information from the very kind and experienced members here
its so scarey and worrying to see our kids go through this horrible illness and I can hear the fear and confusion in your post
Sadly I do remember that feeling well 
i just wanted to say that at 16 your d isnt WR as such as needs to continue to gain  weight into her 20’s
also with the added activity of going back to school and all the stress that involves she needs to keep eating and with restricting as you said she did, would cause the behaviours to come back
we found with any weight loss at all with our d we noticed a change in her mood and return of ED  behaviours 
it’s SO hard and you want to think “yay! We’ve got this, she’s WR, life’s back to normal”
unfortunately it’s not that simple and I’m surprised the “team” don’t warn you of this but this is where this forum is useful 
obviously you don’t want to hear that it takes years (I didn’t).........
but it does, you need to make sure 3 meals and 3 snacks go in and stay in everyday for a long time (into her 20’s) or as we found it comes back 
my d dx at 17 is now 20 (good news is she is doing well, BUT it has been a nightmare I’m not going to sugar coat it) 
but it’s best  you know so you can get your head into the right space so that you can help your d
does you d have anything that you can use to motivate her? leverage?
even if she loves school?  food first then school
life stops till you eat!!
this didn’t work for our d as she had already left school but many here have said their kids love school so that might work or try to think of things that motivate your d to eat 
does your team know about the fainting and ambulance st school? This is important to share and did the hospital admit her?

often the hospitals aren’t that knowledgeable on ED, my d was admired and didn’t eat for around 6 hours I ended up ringing my h to bring a banana and a sandwich for her, is disgraceful that some professionals are clueless on this illness (as well as frustrating and just not good enough as far as I’m concerned but that’s another story)

I wish you luck and I’m sure others  will be along to offer ideas and support
hugs x
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scaredmom
Mishka,
I welcome you to the forum. I will reply in more depth shortly. 
I know it is so awful and you are not alone. Many have been exactly where you are. I have some ideas for you and I will post soon when I get home. 
Please know that what you described is normal and we can support you through this with our experiences. 
We will share our stories in order to help you. 
Please ask all the questions you have.
Big hug
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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scaredmom
Mishka,
i do think the team let you down by giving control back so soon. I am glad the paediatrician has handed back all the control to you. Yes Ed has a lot of tricks that you will need to extinguish by being vigilant and searching and looking for everything  tossing food etc.. we can help with that.
A couple of suggestions: you may need to take her out of school. Her actions and the fainting are telling. School does not matter when they are so ill. Many have had a graded return to school one or two hours and building up on that.
When the environment changes ie starting back at school and a new one at that, ED can rear it’s head. I wonder if you or your significant other could take time off for supervision and support. Please talk to the school as well about her condition and any accommodations needed.
 I see you are in Canada. I am in Ontario. We do have social worker and child and youth workers in my small city that do offer meal support . Not sure where you live but you may have that as well. Also if you are with Canadian mental health association, they should have school contacts for meal support and other resources for your child. 

At meals it is best that d not wear anything with pockets or sleeves, dog should not be around her, he may eat most of the meal.

Just a word of caution after WR it takes a long time for brain healing.  WR does not mean they are back to normal cognitions at all. Took my d almost 12 at the time now 14, 4 months after WR and another 6 kg to seem more like herself. It took an extra 4 kg on top of that and 2 more months to really feel more normal.
it has been 2.5 years and d does not have much control with food. I am still mainly in charge save a few meals and snacks. 
it takes a long time to hand back even a bit of control. But the first few months are the hardest it does get better.
All the best
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Kali

Dear Mishka,

Welcome to ATDT and I hope you will get helpful support here. 
If your daughter was first diagnosed on July 2 and you have already gotten her weight restored, then in fact you are doing a truly awesome job.

We also had a similar situation when our dietician told my daughter it was time for her to have a little more independence and she was not yet ready for that, and lost weight. I think it is quite common. When that happens, a helpful thing to do, as your team suggested, is for the family to again to supervise meals and make sure they are eaten. This is not falling apart; it is simply feedback on where your daughter is right now in her process. She cannot yet eat on her own and is hiding food. Perhaps she cannot come to the table or for lunch in the car with sweatshirts or pockets where food can be hidden and perhaps the dog (who might like getting handouts of food under the table) should not be near the table when you are eating. It will take some time being weight restored and being fully nourished before she starts to be able to do eat on her own again. We started very slowly. When she had been weight restored for 3 months, we let her choose snacks while she was in the room with us and eat them. So we gave her a choice between two snacks. And then we started to let her plate her own food but we made sure the portions were large enough and we sat and ate with her until they were finished. It is also quite usual for the meals to take a long time.

Transitions are also very difficult, so right now with the school transition it is not surprising that you are seeing a resurgence of symptoms and she needs additional support. Do you think it might be possible that she fainted due to not eating and ditching her food? 

There is a book that many parents have recommended:
"When your teen has an eating disorder" by Dr. Lauren Mulheim. if you want to look for it.

warmly,

Kali

 



Food=Love
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Mishka
First of all I want to thank all of you who have replied to my post.  This is an illness that you feel alone in and only people who have family members who are going through this truly understand.  So I thank you very much for your advice, tips and caring concern.
i have been off work since her diagnosis and plan to be off work for sometime.  I do wonder when the right time will be to go back to work.  My work family has been very understanding but at the same time they have no idea. I am now supporting her at her lunch by driving to her school but unable to do snacks as we love 20 min away and that to me doesn’t make sense to drive there and back to the school 3 times a day.I feel I would be sitting in my van all day.  I have no idea about meal support at the school.  If they have that that will be helpful.  My D’s guidance councillor and VP have been very supportive and want to help any way they can.  For snacks my D leaves class twice a day and goes to guidance and she sees that D has a snack and we keep in touch closely.  I know the guidance councillor can’t tell my D to eat but she can at least monitor that she eats and will tell me if she eats or not. 
I did ask the pediatriton if school is too much for her right now but she thinks if she wasn’t in school she would have more anxiety.  But then I think if she isn’t healthy enough to be at school how can she learn and is all this added anxiety and stress about the new school causing more weight loss as stress causes stomach pains and nausea.  I know this is the first week and today she did show progress where she made it through the morning but couldn’t return after lunch due to her not eating her lunch.  My rule is no food, no school.  Now my D is not a lover of school.  She has always found school hard but she always has tried her best at school.  I just hope by me telling her if she doesn’t eat, then no school that she will deliberately not eat so she doesn’t have to return to school.  But today with her hiding the food I think she really did want to return to class.
and with her fainting,  I really believe it was a anxiety attack.  She ate a good breakfast because I made it and watched her eat it.  She has fainted before due to anxiety.  She has also been diagnosed with social anxiety disorder and depression and is on an antidepressant.  And yes the ED team know about her fainting spell and no did not get admitted to hospital.
as for leverage we usually use her cell phone and it has seemed to work but this week nothing has worked as she says she is so done.  When her ED behaviours spiral out of control you can’t reason with her about anything.  It’s like she doesn’t hear you and it just makes things worse to reason with her in that state.  She used  to love to sing so that could be leverage but she has lost interest in a lot of things.  On her good days I will hear her singing and acting really happy and more like herself but you guys are so right since the weight loss her mood has lowered, more irritable and more tired.  The dr doesn’t want her napping so it doesn’t mess up her sleep cycle at night as she has always had trouble sleeping at night.  I do find her sleep better at night since we have cut out most naps.  I do catch her napping lately and especially this week but this week has been mentally exhausting for her.
i will see what the FBT says this week and see if her weight has gone up. She may suggest her not going to school at this point or maybe she will suggest the day program which I hope we can continue treatment at home if we can get her back on track.
i do agree that the team gave back her independence too soon but I guess we experimented and no that she is not ready for that so my D needs to get used to us being in full control.
My D still sees herself as fat and she thinks we are continually stuffing her full of food and her stomach continually hurts.  With her extra weight she looks so good and so much healthier but she can’t see that.  I hope someday she will.
i will def try no pockets in her tops and pants and will have her always eating at the supper table and I am amazed that you know that we have a dog because I don’t think i mentioned that but maybe I did but yes prob a good idea he isn’t in the kitchen during meals.
I do have that book that you mentioned about when your teen has an eating disorder.  A very good book.  I have done a lot of reading and research but may need to refresh some of it.
just wondering if there is anything you can do to get them to swallow there food normally instead of her chewing it for 20 min.  She will put so much in her mouth at once and chew and chew and chew.  It is so hard to watch.
My other children are finding this very difficult as well and I’m sure they feel neglected these past couple months. I have 3 other children, one older who is far away at university but she was home over the summer so it was not an easy summer for her and 2 younger children.  It has been hard on them and they don’t find meal time enjoyable.  I feel bad this week as I haven’t got to spend hardly any time with them.  I’ve barely got to ask them about there first week of school.
and yes I am from Ontario.  Near London Ontario.
Anyways I am off  to bed as I am exhausted.  I need to take better care of myself but that is hard to do at times.  Thanks again for your support.
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Foodsupport_AUS
Welcome to the forum, you have done  a great job with things so far. 

Given how early on things are it is not at all surprising that your D is still really struggling. Although she has gained some weight as others have said she is probably at a minimally normal body weight. I assume other markers of health are normal such as periods? 

Many parents found that we had to supervise foods for a long time. Many also find that anxiety is worse just before weight restoration so pushing through this can be really important. 

I would definitely side with not going to school if it is in any way getting in the way of continued nutrition. The more fluctuation there was in nutrition we found the worst D's mood got. So steady regular meals without any chance to ditch meals, purge , or just miss things worked much better than trying to be flexible with timing early on. My D missed a lot of school, 18 months and today is now doing well, and will finish her qualification next year. 
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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tina72
Hi an a very warm welcome from Germany. My d was age 17 when diagnosed 3 years ago.

Your case sounds like one of the really common cases where therapists decided to give back control too early. This is one of the most often relaps risks I have seen in the last 3 years. So take that back and get into control again until she is ready (you will know when this can happen by watching her state - when ED has moved out and her behaviour is nearly normal again then it is time for phase 2/3).
To give you an idea of a timeline, my d was diagnosed in 01/2017, WR in 08/2017 and we started to give back control about a  year after WR and I am still plating lunch here (which is the big warm meal in Germany) and we still have many rules about meals and snacks although she is 99% free from AN now. AN recovery takes years. But it is possible.

About your question when to go back to work: if your d is in a good state and you can organise meal support at school and snacks are supervised and you feel ok with going back to work then try that. You can change your decision if needed. But please be aware that caring for an ED patient took a lot of power from you and when you feel exhausted and suffer from carer burnout this might now be the right time to do something for yourself and let work be work....

But if she is going backwards at the moment it might be a good idea to take her out of school again until you all are back on track...

"My D still sees herself as fat and she thinks we are continually stuffing her full of food and her stomach continually hurts.  With her extra weight she looks so good and so much healthier but she can’t see that.  I hope someday she will."

This is normal at that state and it will slowly get better when brain recovery starts. That will happen when she is on a good weight for her person and she maintains that good weight (and gains normal with more age). All her strange eating behaviour that is still left makes me think about that she might not be WR and at a good weight already... how did they calculate WR in her case?
The stomach issues accompanied us for more than a year after WR. Now gone.
The body image problems too. Most changes happened about a year after WR but still now 2 years after we see progress nearly every week. Bevor our summer holidays I would have written my d is 90% free from AN. Now I can say it really improved in the vacation.

"just wondering if there is anything you can do to get them to swallow there food normally instead of her chewing it for 20 min.  She will put so much in her mouth at once and chew and chew and chew.  It is so hard to watch."

This might be part of her stomach problems and maybe it helps to give her a small spoon or fork so she cannot put so much food on or to change to finger food for some time? It might also help to ask her to swallow now after 10 chews or so and take the plate away until she has swallowed. Some do count the chews before they swallow, this might help too.
She does not enjoy eating, she just wants to get rid of you and the food. This is also a sign that she is not there for more freedom. The moment she says "yummy" or asks for seconds or you see she really enjoys a meal is a sign for state 2. I know you really do not believe this will ever happen because I also did not but I can tell you it WILL happen. Not tomorrow and not next week, but it will. I am now hearing sentences like "salat is overrated"...🙂

"My rule is no food, no school.  Now my D is not a lover of school.  She has always found school hard but she always has tried her best at school.  I just hope by me telling her if she doesn’t eat, then no school that she will deliberately not eat so she doesn’t have to return to school."

This was same here too, I could not really use school as an incentive as she did not like to go to school (she is at university now and loves that). So I did not use school as a leverage but made clear that I expect her to go to school and I expect her to have breakfast before.

"She has fainted before due to anxiety.  She has also been diagnosed with social anxiety disorder and depression and is on an antidepressant."

There are other kids with fainting because of stress and anxiety here, maybe these mums will join in soon and give you some ideas.
Social anxiety and depression are part of AN. It cannot get better until they eat normal and are on a good weight. The antideressant might not work when she is still underweight. Are you sure she is on a good weight?
Keep feeding. There is light at the end of the tunnel.
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scaredmom
I wonder if you gave her a drink after every bite so that she is forced to swallow, how that may work?
Just a suggestion.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Mishka
Thanks for all of your support.  It was nice to wake up to more support and some great tips.
it is nice to know that I am not alone in this journey even thou I wish none of us have to endure this.
so this am I wake up ready to take full control and my D woke up with terrible period cramps.  Ever since her period has come back she has had these horrible cramps and heavy periods.  So I made her her breakfast after giving her some ibuprofen for the pain and she couldn’t eat as the cramps are so bad. She is crying in pain.  So I get her to the couch and make her a milk shake and she only has a few sips of that and almost throws up as she is wretching.  I’m not sure if this is due to her period cramps or ED behaviour.  I used to have terrible cramps when I was her age or up until I had kids and I do remember it making me nauseous.
so I am just not sure what to do.  Do I let her cramps settle and try with food in a bit or so I take her to the hospital.  D refuses to drink the shake as it hurts her stomach.
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scaredmom
The pain of dysmenorrhea is real and the nonsteroidal anti-inflammatory properties of the ibuprofen are great. I may suggest, that you give her the ibuprofen every 6-8 hours as well as Tylenol every 4-6 hours. They can work wonders together. One for pain and the other for pain and inflammation. By giving her the meds on a very regular basis, it may help to keep the pain at bay. Once the pain comes back up, it is hard to get it down, but once it is "down" it is easier to keep it down. that is why I suggest using the meds regularly for the first day or so. As long as there are no medical issues that would preclude that. I do that here for my girls and myself, and the combo really helps my migraines!

I would keep pushing the food as well as liquids as best as you can. The stomach pain can be from ED and many have found that distraction or a hot water bottle or heating pad can be helpful. 
Have her sip on the milk shake. Setting the expectation that  full nutrition 24/7,  is always the priority, can be key to compliance for some.  
Let us know how it goes.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Mishka
Thank you for the advice on the pain meds.  Just gave her some Tylenol now and have her sipping on some sprite and her milk shake.  She has had heating pad on all morning.  She is resting comfortably now.
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tina72
Try to put her in front of TV with a shake with a straw in her hand. They often drink without recognizing while watching TV.
When she has very strong periods iron levels should be watched after.
Keep feeding. There is light at the end of the tunnel.
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Mishka
So an update,  D is still having stomach pain and refusing to eat anything this am.  She is sipping on gingerale.  She is saying her pain is stomach pain now not menstral.  She ate a little bit yesterday but no where near the amount she needed to.  And she is completely refusing food.  So my husband and I decided that we are taking her to children’s emerg to get her stomach pain checked out.  I don’t want to take her to hospital but feel we have no other option.
i am still thinking the stomach pain is ED related but what if it’s a medical condition.  Worried she hasn’t ate well in a few days and now eating nothing.  I will keep you all posted.  Say some prayers for my D and for my family please.
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sk8r31
You are likely right that the stomach pain is ED-related, however, best to get it checked out.  And that also indicates to your d that you are taking her pain seriously BUT full nutrition is needed & if she hasn't had proper nutrition for a few days it IS serious.
Best of luck to you.  Also a good idea to bring snacks & drinks with you, as the wait might be long, and at least you will have something on hand if you can encourage some sips and bites.
Hang in there....holding you & your family in my thoughts.
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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scaredmom
Always better to get it checked out. If it is ED related then it also shows d that if she does not eat, it is serious to warrant urgent medical attention. Yes totally agree with sk8r31 about bringing snacks and drinks with you as you may have a long wait time prior to being seen. 
I also found that having a note from the ED team in case of going to ER that spelled out the diagnosis and what to be aware of helpful. That way if the team that saw her in ER could call the peds on call for proper ED advice and follow up. We did not have to use it but it was helpful.

You are doing the right thing. Let us know how it goes.
Sending my best thoughts for the ER visit. 
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Mishka
So it has been a very long day.  We are home but D was very close to getting admitted and they said if we really wanted her admitted they would do that.  Blood work was good.  D agreed to eat some crackers and cheese at hospital which she did without any difficulty.  Was very strange.  D agree that she would start to eat and dr said to start refeeding her slowly to decrease her anxiety and to help with stomach discomfort.  We got D a wrap on our way home and she ate almost half of it and starting holding food in her mouth again and got severe stomach pains where she almost threw up.I am now wondering if we made the right decision about bringing her home.  We got her settled on the couch with heating pad and distracting her with tv and sipping on a drink.
I will call her therapist in the am to see if we can see her tomorrow to see what our next steps are.  
We will take it easy tonight and offer her a light snack in a bit to see if she can handle that.
I am so disappointed that the ED team gave D back independence so soon.  I feel if they didn’t do that we would not be in this position.  
I have decided to keep her home from school until D gets stronger.  The dr did make it clear to D that she needs to gain weight and if not she will be hospitalized and possible put an NG tube down her nose.  I think that scared her.  
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kazi67
Thinking of you and your d so worrying to see them in so much pain I hope you get to the bottom of it
my d has suffered terrible period pains for many years now
She has an ultrasound to see if anything was amiss 
all results came back ok
i myself never suffered from this but as it turns out my mum did so maybe it’s genetic??
some mentioned that the pill may help but by this stage my d periods had stopped altogether so we haven’t been able use that for her as we needed to see her “normal”cycle return 
and the pill would of provided a “fake” period but maybe it’s something you can discuss with your d doctor 
x
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scaredmom
Glad it went ok. It is wise to talk to your therapist about the next steps.  Having the threat of IP or NG is a great motivator for some kids, so I am pleased to see that worked for your d. 
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Mishka
Thanks for your concern.  D is saying pain today is not period pain.  She is pointing to above belly button and over left side. Pain seems to come on when she eats food.
Her paediatrician did mention birth control pill for period pains when we saw her last week.  She said we can discuss that further if they persist.  I always had terrible period pains and my other girls do as well.  So very well can be genetic.  My older girl uses naproxen and my younger daughter uses a heating pad as she hates taking medications.
I am still believing that these stomach pains are ED related. 
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scaredmom
One of the most important things I learned here on the forum and at home, when the parent thinks it is ED, it IS ED.
Go with your gut, (sorry I did not mean the pun) AND  get it checked out for safety's sake. 
All the best.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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tina72
My d had stomach pain during refeeding up to one year after that. It was mostly REAL pain because the intestine system had shrunk but some times I was not really sure if that pain is in her head (and she really feels it) but not due to eating, just because we wanted her to eat and she though she could avoid eating. I then started to give her some pain meds for some days an hour before the meals to make sure she will not feel pain and to be able to tell her that she must eat no matter what.

We then changed to plant meds for the stomach (it is called Gastrovegetalin here and is made from balm). That worked very good. She took her "meds" beforethe big meals to avoid stomach pain and it was much better than.
About a year after WR these problems faded.
Keep feeding. There is light at the end of the tunnel.
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