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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Ronson

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Reply with quote  #26 
We use biminu for the bloating - it’s herbal sachets out of Tesco - seem to help with my d - be careful with heat pads - my d had water bottle and managed to get a heat rash which is only now fading and can be permanent.

So sorry about your d - it is a terrible illness
toothfairy

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Reply with quote  #27 
Hi again from Dublin,
Regarding her labs, just be aware that the labs can be normal with severe AN and change by the hour.

https://www.mirasol.net/learning-center/but-my-labs-are-normal.php

https://www.ncbi.nlm.nih.gov/pubmed/22041793

https://www.denverhealth.org/services/acute-center-for-eating-disorders/acute-medical-mondays/article/bone-marrow-failure

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toothfairy

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Reply with quote  #28 
Here is some advice on purging I came across  from a leading expert in ED treatment.

1. Often, they simply cannot be left alone, ever. For anything. So – parents need to enlist help from friends/family/church etc to take care of OTHER things in the house – like laundry, food, siblings, pickups/drop offs, etc, so that parents/caregivers can full-time focus on their child and keeping them safe. Family medical leave, etc, should be used to max. If not possible to leave work, then school or other family members have to substitute as supervisors when necessary. Kids need to be watched in bathroom, in all places of house. To make this workable, parents usually will have kid sit in a common area of home near them as they work and get stuff done. But no bathroom or alone time, ever, until purging wayyyyy better.

2. Parents usually have to employ same maneuvers at night, changing sleeping arrangements in house so that child is not sleeping near a bathroom, and a parent is sleeping near her on an air mattress or other bed, blocking the path from child’s sleeping place to door that could go to bathroom or somewhere else to purge.

3. If child is recently discharged, running/exercise would not be prescribed in any form yet. First form of activity would be school and no others would be added until purging under control and at a goal weight and in school with that going well, first form of activity would be PE or iceskating with friends or bowling or something social and mellow – NOT running.

4. Close followup is needed.

5. If you suspect purging, it likely happened. She/he will need to understand that if you suspect she/he purged, she/he needs to replace the food.

6. Nothing eaten counts unless a designated adult saw it get eaten – so her/him telling you that she ate a banana or anything doesn’t count – it only counts when it is witnessed; otherwise it will just be ‘extra’ and she still has to eat prescribed food in front of you.

7. These behaviors are dangerous and lethal. EVERY effort of you, your team, your extended support system, your school system, should be on containing them and treating them just as swiftly and stringently as you would if he/she was using drugs right in front of you, or running into traffic. She cannot stop on her own, and he/she cannot be reasoned with about them. The containment has to be all around him/her.

8. Online forums often helpful. Go online and speak to people who have been through this.
 
 

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mimi321

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Reply with quote  #29 
A couple of non-dairy suggestions: full fat coconut milk, the stuff in a can. Add to coconut yogurt with canola oil (no taste).. You can make coconut milk/cream ice cream or possibly buy it. What kind of things does she eat now? We could help suggest ways to enrich them if you like, we have learned lots of tricks along the way.
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Torie

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Reply with quote  #30 
Quote:
Originally Posted by Cazerella
I am really worried with this dairy allergy how we are going to increase calories. 


The two things that helped me the most were 1) reading the labels and 2) adding rapeseed oil and/or or butter to everything I could.  Others report good success with adding ground nuts.

I think the time it took to complete a grocery trip probably tripled because I had to check the relative calories in EVERYTHING.  Some forum members have found bread that has many more calories per small slice than regular.  There is more variation in caloric content than I had realized in most things.  Thick sliced bacon became a staple in the Torie household. 

I learned (here) to butter both sides of the bread when making grilled cheese. (Can she eat cheese?) I was amazed to learn that rapeseed oil disappears without changing the texture or flavor if you stir it in briskly.  You can add it to things like soup, rice, and even juice.  Some grind nuts to a powder and add them to all kinds of things.

All the little bits add up.  

Most find it is best to keep the ED-kid out of the grocery store and away from the kitchen when you're preparing food.  Their only job is to eat.  Not talking about ingredients or calories seems to make it "easier" for them, and if they ask, say something non-committal and then change the subject.

I'm glad to hear you are an ER nurse.  I didn't have any training or experience.

Keep swimming. xx

-Torie

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pettelly

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Reply with quote  #31 
I'm so sorry you're going through this. The early stages really are horrendous. But this marvellous community of parents who have lived through this nightmate are here to support you. 10 is very young but the plus is that you are still in control and they're much less sophisticated than older kids. My D was 13 when it all started and im so grateful she wasnt older.
There are some great resources here and the suggested approach does work with most kids. It's really hard but it does get better.
pettelly

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Reply with quote  #32 
My D has lactose intolerance and in the worst days of anorexia would refuse any dairy. We found canola oil was amazing to add to a whole variety of things Plus nut and seed butters and powders. We'd make smoothies twice a day (you can use soy cream, non dairy ice cream, nut butters plus powders)which were non negotiable.
toothfairy

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Reply with quote  #33 
Here are some tips that may help you After your D is out of danger of re-feeding syndrome .

Helpful tips from a fellow carer - shared with permission.

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!

21. Learn from others. I found this website with stories of other parents journey through recovery to be extremely helpful - http://www.maudsleyparents.org/familystories.html

22. Recommended reading: 'Brave Girl Eating' by Harriet Brown, "When your teen has an eating disorder " by Lauren Muhlheim and "Anorexia and other eating disorders" by Eva Musby

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.
28. Remove all weighing scales from your home. You may need to remove mirrors too.
Hope this helps!

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tina72

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Reply with quote  #34 
"Is there any tips to help her with the discomfort of bloating?"

Bloating is reaction of too low food intake and will last VERY LONG. My d is more than one year WR and now we see less bloating but she still needs plant meds for it now and then (especially after meals with much vegetables).
What helped: Regular food intake. Not only 3 meals. 3 meals and 2-3 snacks, eating every 3-4 hours. Reducing fruits and vegetable to a minimum. Small footprint (many calories with a small portion). Warm cushion after meals. Plant meds for digestion. Dry bacterias to drink to help her intestinal flora. That is dead as after chemotherapy or antibiotics now.
It gets better slowly by time but it will stay for a long time.

Tina72

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toothfairy

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Reply with quote  #35 
Here is a day with the fabulous Eva Musby, I would highly recommend getting to this.
No automatic alt text available.

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tammy

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Reply with quote  #36 
Hi Cazarella,
Our stories are similar in that my son was diagnosed at a very young age last August, I am in Scotland and I work for NHS as a Pharmacist!
If you can go along to see Eva Musby please do. She was invaluable to me. I did some coaching with her and it was great. Her online videos are also great.
Good luck and please be reassured with patience, love, feeding and the help of this forum you will get your daughter back again.
X
Mcmum

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Reply with quote  #37 
Hi Cazerella and everyone,
A lot of great advice here. How are things going? We are still trying to cope with son's bloating but haven't really found anything that helps. He just needs lots of reassurance. With regard to avoiding dairy, we put ground almonds in everything.
How are you coping generally? Sending warm thoughts x
Cazerella

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Reply with quote  #38 
Hi Mcmum. The advice is amazing. It is just so hard. The vomiting yesterday took us backwards. We are seeing consultant at 2 tomorrow. I just need reassured that I am keeping her safe.
Ground almonds is a great idea can he taste them? Have been adding oil where I can.
How is your son now ?
Struggling a bit but strong with her. Husband seems to be struggling and cannot seem to take the right approach and ends up shouting which makes her worse. The nurse said it was vital we both took an equal approach so she didn't end up refusing for one parent. I have reiterated this to him. I haven't slept for days as she is now not sleeping and I can't sleep till she does so I know she is safe.
Be glad to get her seen tomorrow.
Thanks to everyone for your support, knowledge, links and resources. Very interested in the conference or maybe start with the book and consider coaching. Hope you are all okay x
Mcmum

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Reply with quote  #39 
Good luck with the consultant. It will hopefully be reassuring and you can ask any questions that you need answering. I haven't had experience of vomiting and I understand it's really challenging.
Ground almonds and rape seed oil I added to everything and my s was oblivious. The rest of us have put weight on but none of us care any more!
My h veered from aggressive denial that there was a problem to being absolutely brilliant but he's tiring of it now and can be a bit shouty too but then so can I sometimes. It's really hard remaining calm when you're feeling anxious and upset and desperate yourself isn't it???
My s has just returned to school, is kind of weight restored but now growing upwards at a rapid pace and is largely much more like his old self. You too will experience this in time but those first few months are especially tough and I don't think anything we have ever experienced can prepare you for that. He has blips: yesterday he became hysterical about a cup of tea and took 90 minutes to eat a bowl of soup but there's more good than bad these days. Found it helped to give up asking why him? Why us? Where did I go wrong? I just try to roll with it now but not easy especially when you're not sleeping and it feels like you're in some kind of weird nightmare. Truly you are doing well. Keep doing what you're doing and you can all come through this x
MamaDo

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Reply with quote  #40 
Hi Cazerella,
Glad you found this forum, but sorry you had to. There’s a lot of great advice here; 3 months ago I was where you are. My 12 yo D was purging every meal, her BMI was down and I was waitlisted for my area’s ED program. This forum saved us during the 2 month wait to get into the ED program.

Purging is so hard. For the first month, we were with her all the time. Privacy was gone - no bathroom trips by herself, no showers by herself, no shutting herself in her room. I held her close - literally - after every meal, trying to distract her from ruminating about food. Sometimes this didn’t work so my H or I blocked the door to the bathroom. There were a couple of 30 second windows that ED took advantage of, when we got distracted for just a minute, and we didn’t catch her in time to keep her from purging. We also had to sleep with her for awhile because she was getting up in the night and doing dangerous things recklessly - she’d burn herself with a curling iron or cut herself, all “by accident”.

We plate every meal, and a couple of times a week she resists and ED comes raging forward, but we hold strong and the food goes in and stays in, and she is at WR.
(FYI, for dairy replacements, we used sweetened soy milk. Tea “lattes” and “frappes” with sweetened syrup were mainstays, because our ED didn’t count drinks, thank goodness.)

This forum saved us, and empowered me with the support we needed to battle our daughter’s ED. Stay strong, have heart, and come back often.

Xoxo
MamaDo
mimi321

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Reply with quote  #41 
Hi Cazarella,

hope your appointment and day went okay. Appointment days are usually very stressful in my experience.

Maybe it would help to show your h a video so he can get a better understanding of what your D is going through as anger and shouting will only make ED stronger. Your D already has a very critical voice from ED which she needs refuge from. I found showing a video to my h helped to give him a quicker understanding of everything. Sometimes when you're in crisis mode it is hard to read and take things in. Maybe this one will help.

I add 3 Tablespoons of almond meal to my D's oatmeal and she doesn't notice it. I haven't tried it with anything else.


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Cazerella

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Reply with quote  #42 
Hi all,
We are in hospital. She was dehydrated and consultant couldn't get bloods. So we are in sick kids hospital to stabilise her then there is a bed available in the specialist unit for under 12s in another city not far from where my elderly parents live.

In a way I am relieved, but also so scared especially after a Dr ( who I am sure thought she was being helpful) tried to get through to her the severity of the situation. I felt it a bit unfair since she made it clear she would not be the Dr looking after her and was due to go home. She went on to tell her how several children her weight has gone on to die. Given that she is ten, I was a bit dumbstruck. Although my ultimate fear is her death I believe she can survive, I have to. X
krae

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Reply with quote  #43 
I can't believe what the Dr said to your D, it is disgraceful and very unprofessional, especially given her age. Be thankful that that Dr was not the one going to be the one looking after D! The sooner she is stabilised and transfered to the specialist unit the better. I'm sure they will be more tactful and age appropriate in dealing with ED.

Never stop believing in her survival, she is so young and has much life to enjoy once ED has been banished from ever talking to her again.

tammy

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Reply with quote  #44 
Hi Cazarella. I am sorry to hear that but she is in the right place. At least at the specialist hospital she will have people caring for her who understand the illness. Trying to make child see severity of condition, talking about consequences of not eating and reasoning does not work. Their brains are malnourished and no amount of reasoning will help.
It is very difficult for a lot of the family to deal with not eating and the anger and violence associated. My Husband found it hard to see me so upset and to deal with the terrible outbursts and behaviour. He was working and didn’t have time to read Eva Musbys book but I directed him to the most important chapters. The video where it likens the fear your child is experiencing to having to face a bungee jump really helped us understand what my son was going through. You can get it on Eva Musbys website.
Feel free to personal message me if you like with any questions as we both have very young children and are in Scotland. I am no expert but will help if I can. X
scaredmom

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Reply with quote  #45 

Quote:
Originally Posted by Cazerella
Hi all,
We are in hospital. She was dehydrated and consultant couldn't get bloods. So we are in sick kids hospital to stabilise her then there is a bed available in the specialist unit for under 12s in another city not far from where my elderly parents live.

In a way I am relieved, but also so scared especially after a Dr ( who I am sure thought she was being helpful) tried to get through to her the severity of the situation. I felt it a bit unfair since she made it clear she would not be the Dr looking after her and was due to go home. She went on to tell her how several children her weight has gone on to die. Given that she is ten, I was a bit dumbstruck. Although my ultimate fear is her death I believe she can survive, I have to. X


I am so sorry that the doctor was so blunt and insensitive. I do think she meant well to "shock" your D but she is so young it was uncalled for.

I believe too she WILL survive this and so will you.
XXX

Food+ more food+ time+ love+ good professional help+ ATDT + no exercise = healing ---> recovery (---> life without ED)


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

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Reply with quote  #46 
Hi Cazerella, I'm really sorry your d has to be in hospital.  Given that she was dehydrated, though, I'm glad that they admitted her.  Do they let you stay with her a lot of the time?  If you have time and inclination, please tell us what they are doing to get the nutrition in.

I agree that it was clueless and appalling for the doc to say that to your young d.  Maybe the silver lining is that they are taking this very seriously?

Thinking of you. xx

-Torie

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Mcmum

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Reply with quote  #47 
Hi Cazerella, I was wondering how the appointment would go and am sorry that your d is in hospital but hopeful that she will get the treatment she needs and that rehydration and refeeding will begin in earnest.
Wishing you and your family strength and courage. Love, food and willpower to stick this out will win through xxx
mimi321

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Reply with quote  #48 
Hi Cazerella, yes, I'm sure it is a relief for sure knowing she will be medically monitored. It is really unfortunate that doctor made that comment, hopefully she won't remember it or it won't impact her the way you would think, but it sounds like it certainly shook you up like it would! I have had doctors in outpatients make really uninformed comments like that which really did not help at all. And yes, your daughter can and will survive!!! X



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Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think. - A. A. Milne
deenl

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Reply with quote  #49 
Hi Cazerella,

My son was also pretty young and it feels so unfair that they have to experience a life threatening illness with a difficult recovery path.

But, believe me, we are the 'lucky' ones. Rates of recovery are much better in this age group and they are under our beady eye for almost a decade! Almost a decade to make sure that recovery sticks. When you are passed the absolute hell you are in now you will realise how priceless that time is.

In the meantime, the learning curve is huge. The Kartini Clinic blog has lots of useful information about the young ones. Sorry phone playing up and can't post link.

Wishing you strength and courage

D

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2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
tammy

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Reply with quote  #50 
Hi Cazarella, What Deenl is saying is right. My son who was only eight when he was going through this last year doesn’t even seem to remember what he went through last year. There are no behaviours left and he is in a good place. He doesn’t even know he had an ED. He thinks he had a virus!
Tammy
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