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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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canadamom12
My d was diagnosed this month after a very quick 5kg loss since end of August. My husband and I were shocked how quickly this took hold. We have seen pediatrician but we are so dismayed that wait lists for treatment are so long. We can not get in to FBT until Feb 28.
It feels so overwhelming that we are on our own until then. We have been reading as much about it as we can, but it feels like a nightmare, our d’s vitals are so low that they are debating pulling her from school. Just praying that we can get her going in the right direction on our own from here until FEBRUARY. I guess I don’t have a question to post, just mostly need to vent about how lost and hopeless I feel at this stage.
End rant.
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tina72
Hi canadamom12,
so sorry that you need to be here and that you got so less help from the system up to now.
I am sure some canadians will join in soon with more ideas how to get help faster.
Until then it is really no problem to start FBT on your own at home if your ds vitals are good enough for that and she does not need IP because of any physical risk.
We can help you with that. I am from Germany and we have no FBT in our medical system so parents do that mostly on their own here. It is possible. And at least you will do most refeeding work on your own at home anyway.

Some more questions so we can help you better:
How old is your d?
Did she already see a GP for physical check? Heart, blood, bones?
How long is she restricting and what?
Is she purging?
Overexercising?

I can imagine how shocked and overwelmed you must feel at the moment. But it is a treatable illness and you can help her to get better.
You are not alone. Here are a lot of nice parents from all over the world that have been in your shoes and that can help you.

Tina72
Keep feeding. There is light at the end of the tunnel.
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canadamom12
tina72 wrote:
Some more questions so we can help you better:
How old is your d?
Did she already see a GP for physical check? Heart, blood, bones?
How long is she restricting and what?
Is she purging?
Overexercising?

I can imagine how shocked and overwelmed you must feel at the moment. But it is a treatable illness and you can help her to get better.
You are not alone. Here are a lot of nice parents from all over the world that have been in your shoes and that can help you.

Tina72



Thank you so much for the encouraging words. To answer your questions, she is 11. We started with GP and were referred to pediatrician. Her heart rate and BP taken there were of concern to him. She is allowed zero activity, no recess, no gym class, and they are debating ordering her to stop going to school but I think they will wait to see in the next two weeks when we go back for a vitals check if there has been improvement as d loves school.
She has been restricting since end of August. We took over and started re-feeding 2 weeks ago. We are experiencing all of the battles that are well documented by other posters. I never knew my sweet d could hurl such hate, but I know it’s the ED brain speaking. She is not purging, and not exercising, as she has no extra energy to do anything but sit and watch tv.
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tina72
So there are some good things in your post.
She is 11. That is a good age for refeeding as you have some more power at that age. Mine was 17 when we started FBT [wink].
She is restricting since August. That is a very short time and that means if you can get the weight back quickly she will have a really good start for recovery and a good outcome.
No purging. That is great. Purging type is much harder to get rid of.
No exercising. Also great. That is also hard to stop.

School: It might be needed to take her out. Maybe you can use school for incentive when she loves to go. For example you can ask her to have a good breakfast to be able to go to school (and leave her at home if she refuses).
What about lunch at school? Is it already supervised? Food that you do not see going in is normally not going in...

Is she already gaining weight? Is she weighed blind?
Do you need ideas/help with weight gain?
Keep feeding. There is light at the end of the tunnel.
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Ronson
Hi

You are not on your own - posting on here will give you amazing support and advice. It sounds as though you are making an excellent start. The advice is three meals, three snacks and as high a calorie imprint as possible. Try to get fats and sugars back into the diet as these all help with brain healing. Remember that the battles will not last forever and try to take one day at a time.

Read Eva musbys book if you can - that will give you some practical advice on the refreeding also

R
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Foodsupport_AUS
Sorry that you are left to a system that takes so long to offer treatment for such a serious illness. I trust that if there was concern she would be hospitalised. 

The plus side is that you can learn a lot and do a lot at home without going to see a therapist. They won't tell you how to re-feed her in FBT but we can help you here with this. There are some great books around. I love these booklets from Australia because they are designed for parents at diagnosis to get you started on feeding at home. http://ceed.org.au/sites/default/files/resources/documents/FamilyLedRefeedingRecoveryResourcePartA_Nov_2017.pdf and http://ceed.org.au/sites/default/files/resources/documents/FamilyLedRefeedingRecoveryResourcePartB_Nov_2017..pdf
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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scaredmom

canadamom12,
You are waiting to start FBT, but I want to let you know that FBT really means that YOU are in charge of her nutrition so it seems to me that you have already started. The team can help you with ideas on how to feed her more and handle the upsets etc., but you will be the main doctor, therapist, dietitian. So how do we get you to feed her more. 
You had mentioned in another thread that your employer is flexible, so if you need to take time off work to just feed her, can you do it comfortably?

Where in Canada are you located? If you don't mind us knowing. There may be someone near you that you can connect with. 
How many calories do you have her eating?We can help you increase so that the weight gain (ie  beginning of healing) is faster. 

What are you struggling with right now? We can all help you with that. We have really been there. 
By feeding her you are not waiting you are acting and treating her with what she needs. 
I might suggest getting a BP cuff and doing orthostatic vitals at home. that is blood pressure and heart rate lying down for 5 min (at least) the standing for 5 min (at least) and if there is a drop of the top number (systolic I use more than 20) or more than 5-10 diastolic (the bottom number) then I would get her to the emergency dept. 
No food for 48 hr go to ER, no drink for 24 go to ER. 

I know you feel alone with this. Can you make an appt with the pediatrician or the GP just to discuss what is going on, on a regular basis. So that they can weigh her and do the orthostatic vitals and help to support you? That may help you to feel. supported too and that someone can look at her too. That may help you not feel so alone.
XXX

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

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

Sorry just saw that you are seeing the medical team for weight for your D and vitals. Do you think you need support for you? Someone to sit and talk to? would you be able to do that with your GP? Is there a  way to take a break for yourself?

XXX

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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Torie
Canadamom, it is really great that you are on top of this so quickly.  Also really great that you found us right away.  That goes a long way toward balancing out how really NOT great it is that you have to deal with the difficulty and heartbreak of ED.

I agree with the others - with FBT, the hard work is done almost entirely at home, by you and your family.  

One of the very few good things about AN is that your goal is very straightforward:  helping your d regain all the weight she has lost.  Although the goal is very straightforward, the implementation can be anything but.  That's why we are here.

Not sure if someone already said this, but most here increase calories by adding canola/rapeseed oil wherever possible.  I was surprised to learn that it disappears without changing flavor or texture if you stir it in briskly.  People add it to yogurt, smoothies, soups, rice, pasta, sauces, etc.  That helps a lot without creating a scary mountain of food.  It is usually best to keep the sufferer out of the kitchen and grocery store - it is your job to plan meals, shop, cook, and serve; your d's only job is to eat what you serve.  All of it - every bite crumb and smear.  (As they say, ED lives in the last bite.)  Most aim for 1/2 to 1 kg gain per week.

I will pass on the good advice I received here to require my d to use the bathroom before each meal so that she could stay with me for at least an hour after the meal.  You do not not not want to have to deal with purging on top of everything else.

Please feel free to ask all the questions you like. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Mcmum
Hi canadamom,
Take heart for as others have said, the main work is done at home. 3 meals and 3 snacks and yes it's really hard at first but it gets better.
It might help to type up a menu that you can say the doctors have told you to follow? The typed menu helped a lot with our son (9) as despite finding it difficult to eat (we had all the rage/throwing/lashing out and crying that you do), the food largely went in and the mod improved. We started with a high cal smoothie with granola, full fat milk and fruit for breakfast. Presenting this on day one means that your child thinks you've gone mad but eventually it becomes the norm and ww3 becomes a little grumbling in time. I shopped around for a mid morning cereal bars that were physically small but high cal and went through the day like this. Evening meal ended win home made flack jack loaded with butter and ground almonds then there was a glass of milk and digestive biscuits for supper.
We found that once we said "the doctors say you have to have this" and presented like a loving brick wall it eventually got easier. February is a long way off and they will only tell you to do this anyway. In addition FBT has people who are kind and will listen to you. We will here but if there is anyone else you can go to for support, then seek that out too. It's crazy hard but you are on the right path xx
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tina72
"February is a long way off and they will only tell you to do this anyway."

And to wait any longer will do great harm because she will lose a lot more weight until February. If you start refeeding today you can see her WR until then!

"We started with a high cal smoothie"

Smoothies changed everything here, too. You can make milky ones with cream and ice-cream in it or fruity ones with canola oil in it.
She will need at least 30% of her calorie intake in fats every day. Fat and sugar are running the brain.

"It might help to type up a menu that you can say the doctors have told you to follow?"

That is a really good idea. Some eat better when they know what will be on the plan for the day.

Come here to ask your 1 million questions AND to vent. That is what we are here for.

Tina72
Keep feeding. There is light at the end of the tunnel.
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Mcmum
Another few of things that we found really helpful:

1. Bop-It: after meals when anxiety was at its highest, my son would be very distressed and this toy gave him something to do with his hands

2. A large yoga ball - for rolling around on, passing between us as a mindless distraction and punching

3. A cat! Not sure how practical a pet is or if you already have them but we got a new kitten who has been a comfort, a distraction and a joy. When my s said he felt no love for anyone or anything, the cat kind of broke through that emotional deadlock. He finds stroking the cat or putting his head towards the cat's head a huge pleasure now, even en there is not much pleasure in life

4. TV lots of it in the first two months. We all sat around together watching more telly than we have ever done in our lives!

For me and my h:

We had a weekly session with a well being counsellor at work. Good for crying, breathing and so on....Also, the cat 😺

Wishing you all the best. It's early morning in the UK - (shout out to all the menopausal women out there!) Hope you have a good day xx
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Nicstar4
Hi Canadamom12,
Agree with all the others. Start refeed now. FBT Teams are the back up for the work that we will have to do, at home, all the time.
If you can get some help for you, and support. Also, if you are able to get any information here, from books and anywhere you can get support.
Good luck, and here to support x
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canadamom12
Quote:

canadamom12,
You are waiting to start FBT, but I want to let you know that FBT really means that YOU are in charge of her nutrition so it seems to me that you have already started. The team can help you with ideas on how to feed her more and handle the upsets etc., but you will be the main doctor, therapist, dietitian. So how do we get you to feed her more. 
You had mentioned in another thread that your employer is flexible, so if you need to take time off work to just feed her, can you do it comfortably?

Where in Canada are you located? If you don't mind us knowing. There may be someone near you that you can connect with. 
How many calories do you have her eating?We can help you increase so that the weight gain (ie  beginning of healing) is faster. 

What are you struggling with right now? We can all help you with that.




We are located just north of Toronto. I know that FBT is mostly at home, it just feels frustrating that there’s such a demand for service that we have to wait four months to get in. And the nurse practitioner has had a phone conversation to say we are doing a really good job so far, considering we haven’t seen them yet, but she doesn’t want us to increase her cals too quickly or else we could do real damage to her as well.
Thankfully we will be monitored by our GP every other week while we are in limbo mode to ensure she is doing okay and gaining.

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canadamom12
edhater wrote:
I am in Ontario, Canada. In fact, it was a year ago this weekend that we realized our daughter was in trouble. That is, it was this weekend when it all came together and made sense and I knew "omg, my daughter has an eating disorder." We got a referral to an outpatient ED Hospital Clinic immediately and our first appointment was set for late February. In the meantime, we found a private dietitian that was current and FBT-minded and we saw her 3 times over the next 2 months. As per her advice, we started refeeding. We were in the throes of refeeding and weight was coming on by our February apppointment at the Hospital. In hindsight, I am so glad that we started feeding immediately. That dietitian pointed us in the right direction. Without question, she showed us how to stop our D from getting sicker by telling us what to do. Recovery had begun.



Thanks for sharing this and I’m sorry you have had to go through it all. What is your daughter like, one year later? As soon as we saw the GP almost three weeks ago and he confirmed my fears, I launched into research of FBT and we began the refeeding process on our own. The ED clinic has been in touch and they are very positive and encouraging about what we have already done. So I do feel good about that but still feel lost and overwhelmed. As I’m sure all of us parents did when we realized what a giant mountain we were staring up at.
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canadamom12
Mcmum wrote:
Another few of things that we found really helpful:

1. Bop-It: after meals when anxiety was at its highest, my son would be very distressed and this toy gave him something to do with his hands

2. A large yoga ball - for rolling around on, passing between us as a mindless distraction and punching

3. A cat! Not sure how practical a pet is or if you already have them but we got a new kitten who has been a comfort, a distraction and a joy. When my s said he felt no love for anyone or anything, the cat kind of broke through that emotional deadlock. He finds stroking the cat or putting his head towards the cat's head a huge pleasure now, even en there is not much pleasure in life

4. TV lots of it in the first two months. We all sat around together watching more telly than we have ever done in our lives!

For me and my h:

We had a weekly session with a well being counsellor at work. Good for crying, breathing and so on....Also, the cat 😺

Wishing you all the best. It's early morning in the UK - (shout out to all the menopausal women out there!) Hope you have a good day xx



Thank you!

We actually picked up a new puppy two weeks ago. We had put down a deposit in August when none of this was a problem, and as puppy pick up date approached I was filled with dread of adding another new thing that would need all of my attention. But she has been the biggest blessing, as a puppy brings so much joy to everyone, daughter included. Also, I think the puppy heard my silent prayers that I couldn’t handle a really needy dog, because she has been nothing short of amazing.

TV - omg I have never watched so much! After dinner every night my husband, d and I bunker down and get our share of tv! Never watched so much Big Bang Theory in my life!

Thanks for the tips.
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smileymum
Hi Canadamom12

Just had to say it sounds like you are really 'on it' and well done getting to this point, not waiting for 'the experts' and for reaching out, researching and getting stuck in to what you need to do. You are already doing so well and I know you will keep on learning, feeding and tweaking things to help your precious d. I read on another thread something like 'when I wavered I remembered that with every meal and snack I was acting to save my d's life' and that helped the parent keep on feeding no matter the resistance.

Great to hear the positives about the dog. A dog has helped my d, too. Just wondering if dog distractions after meals etc are also helpful for your d; mine learned how to teach it tricks, obedience, is responsible for grooming and teeth. Being responsible for a pet can build s/esteem at this time and bonding between them. Plus, she needs to eat to walk it. Just a thought...

I know what you mean about TV...so far we've done BB theory, How I met your mother, most of Friends and Modern family and the Good place (My d is older so not necessarily recommending any of these for yours.) We are certainly getting our money's worth out of Netflix.

All power to you.... please keep in touch when you can. There are so many here who understand your fears and struggles and can support with wisdom, care and ideas.
xx

Smileymum
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scaredmom
Canadamom12,
You mention they don’t want you to increase calories too fast. I am not sure what they are concerned about. If she is gaining well that is good. Aim for 0.5 to 1 kg per week. The risk of refeeding syndrome is really low even in hospitalized ie very ill patients even with a large amount of calories.
So I would feed your child +++.
How can we help.
At 4 months into refeeding it was a lot better. The anxiety was less, her mood better, I had a rhythm. At WR ie 6 months since diagnosis even better still. At one year after diagnosis,and 6 months plus 6+kg higher than first WR pretty normal behaviour and eating. My d is12 kg higher than the first goal weight. She is 13 now and dealing with a few things ED related, but all in all a good and boring normal life. Please note that usually the first weight is set too low. Go by the child’ state, her mind. Toothfairy has that lovely video that you may find helpful.
Keep asking away. We all want to help.
XXX
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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Torie
canadamom12 wrote:
And the nurse practitioner has had a phone conversation to say we are doing a really good job so far, considering we haven’t seen them yet, but she doesn’t want us to increase her cals too quickly or else we could do real damage to her as well.  


Did the nurse practitioner give you any guidelines about how quickly she DOES want you to increase calories?   She should be able to give you a number, say, increase by 300 calories every three days until weight gain is 1/2 to 1 kg per week.   It's really important that your team support your efforts or, at least, not undermine you with vague but dire warnings.  I hope you can pin her down on this so you can re-feed with confidence. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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tina72
As the others said, normally a weight gain between 0,5 and 1 kg a week is the target and there is no need to make that slowly. The longer she stays malnurished the harder it is for her. ED is like a bad bully in her head and she should get rid of him asap.

Tina72
Keep feeding. There is light at the end of the tunnel.
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canadamom12
A week ago yesterday we received a call from the pediatrician. My daughters bloodwork showed she was very medically unstable, extremely low blood sugar and heart rate. We were asked to bring her to hospital and she was admitted as IP that day.
The last week has been so emotional. It’s hard for my husband and I to think about how long she might be here for. We were not prepared for this at all , we thought we had such a good handle on it at home and could support her while we waited to get in to an outpatient program.

The hospital she is at has a very good program, however it is a 45 minute drive from home so this adds more layers of complication to every day.
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deenl
Hi canadamom,

Wonderful that she is somewhere safe. That's the most important thing. Although I, too, was totally shellshocked when my son was admitted as an emergency. He was an hour or so away and it is not easy visiting while juggling school for the other kids, the routine of the hospital/IP and hubby's work. However, strange and all as it sounds I did get into a different daily rythm. It took about 3 weeks to find my stride and it became the new normal and was much easier to deal with. 

Hope you see progress in her condition soon,

Wishing you continued strength and courage,

D
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, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • 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.
  • We cannot control the wind but we can direct the sail.
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scaredmom
canadamom12,
I am so sorry she is in  hospital. It really is the best place if she is medically unstable. There are so many emotions wrapped up in this for us parents. It is hard to be away from them, understanding how ill they are, and how long she may need to stay. I know it is a shock, and it does not mean you did not have a good handle on it, it just means that the ED is really strong right now. This gives you time for self care, I would hope and to get prepared for her discharge.

I am glad it is a good program and that should bring some comfort (maybe that is not the right word?) to a very difficult situation. Is she eating at the hospital? Is she gaining?
I will tell you that for us, IP was the best option. My D was diagnosed and we were given one week to feed and she did not gain and was admitted on the day right from the clinic to the ward upstairs. I have to say it was so overwhelming that week prior to admission, and I did not know up from down etc.. that the IP was a blessing. I knew she was safe, I knew she would get help, I knew I had time to learn. She was IP one week in our city then 1.5 hour away for 2.5 weeks. We went to see her almost everyday and my H would stay at Ronald McDonald House for families too. That helped to decrease the pain of her absence. I do know and respect that everyone of us has their own journey. And for us IP was the best option at the time. We did have a good experience, if you really could call it that, and I understand how fortunate we were. I hope it goes that way for you too.

All the best,
XXX
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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Nicstar4
It must be so overwhelming that all this is happening so quickly. It sounds as if the team are really on it. It was great you started the renourishing at home, as that should set her in a good understanding as IP and when she gets home she will know what to expect. Hope you find a new routine to your days driving to the hospital, and some sort of rest for you when you are at home!
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canadamom12
deenl wrote:
Hi canadamom,

Wonderful that she is somewhere safe. That's the most important thing. Although I, too, was totally shellshocked when my son was admitted as an emergency. He was an hour or so away and it is not easy visiting while juggling school for the other kids, the routine of the hospital/IP and hubby's work. However, strange and all as it sounds I did get into a different daily rythm. It took about 3 weeks to find my stride and it became the new normal and was much easier to deal with. 

Hope you see progress in her condition soon,

Wishing you continued strength and courage,

D



Thanks for the note. You are right, she is safe, they are literally nursing her back to health. She has been totally compliant since arriving - has not refused any meal or snack and is doing well with the mechanical eating. They don’t share her actual weights with us as parents which drives me a bit mad but I’m sure it’s bevause some parents may be enablers and would share this info with their child.

I’m glad your son received such wonderful care. May I ask how long he was IP for?
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