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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mama2c
Hi there,

I found this forum a few months ago and it has been really  helpful.  Thank you all for sharing your wisdom and experiences.

In April of this year (2019) our then 11 year old daughter was diagnosed with AN.  She weighed 64 lbs.  She spent the first week of April at a pediatric ED inpatient program and when she came home we attempted FBT.  After a couple of months she was refusing almost all food and so she spent another week in inpatient at the beginning of August.  Once released, she started an intensive outpatient program 6 hours a day.  After a week and a half, she was refusing food and was very suicidal.  So she started a three-week stay at a different hospital that specializes in adolescent ED with a psychiatric component.  She gained 15 pounds in three weeks! 

She was just discharged Monday at about 82 lbs. and by Wednesday she was again refusing all food except for fruits and vegetables.

She is taking 15mg Lexapro and 2.5mg Zyprexa each day.  These meds seem to have calmed her agitation and she seems less suicidal.

We are waiting to confirm her placement in a residential program, but while we are waiting she is back at the pediatric eating disorder unit.  We checked her in last night.  This is her fourth hospitalization in five months.

She will eat the food that they serve to her. Which is great.  But, when she comes home, she starts restricting and trying to lose the weight she gained.  She says she will not eat unless there is the threat of tube feeding.

We are so hoping that residential treatment will help her.  

Has anyone been where we are?  Have you seen your child recover?

Thanks
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Enn
Welcome to the forum. I hope you find the information and support you need to help your child.
It sometimes takes a few IP admissions to get things going. Every ED and child are so unique. Please know you are not alone.
 That is great about the recent weigh gain! The residential may be a helpful step. My d felt very safe and comfortable when IP and had a hard time eating properly at home. She was only admitted once, though so I cannot comment about repeated admissions. But this is not an uncommon occurrence where they do eat well IP. 
Your child is young and has a good prognosis overall. I am pleased that the weight gain is happening as that of course, is the first part. It does take along time to get better, and you are doing what you have to at this time. You are really getting her the help she needs right now, although I understand how stressful this is. 

I know others will be here soon with their experiences as wel .
I am not sure if you have read this  https://www.amazon.com/When-Your-Teen-Eating-Disorder/dp/1684030439
Many have found it really helpful.
Please know that all of our journeys are truly our own and yes many have been where you are too. It is so so challenging taking care of ED. While she is IP are you able to take a real break from ED, knowing she is safe and you have your next steps planned? 

Please ask all the questions you have. We really do wish to help.
Sending a 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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Foodsupport_AUS
Welcome to the forum.Your story sounds very familiar to me. My D was 13 when she became unwell, but like your D was unable to eat for a long time if there was not an immediate consequence of NG feeding available. In our case my D had numerous hospitalisations over her first 15 months after diagnosis spending 11 of those months in a hospital. She was also mentally very unwell. 

One thing I think that would have helped my D but was unavailable to us, despite many requests, was the option of taking her to the hospital for any missed meals for NG feeding. That is the consequence for not eating at home would have been the same as in hospital. Over time I think she would have found it easier to eat at home and we may have made earlier progress without so much disruption to her life. 

We had a difficult journey through ED and it is now 9 years later. For us the first four years were really terrible. The good news is that my D is mostly recovered, there are a few vestiges of ED there. She is at university studying. She feeds herself, enjoys food again, and is enjoying life. For us the thing that seemed to turn things around were being able to keep her weight slowly increasing but also stable without repeated episodes of no eating requiring admission. Getting a new puppy that D was very devoted to. Persisting in believing that she could recover even when she felt it impossible. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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mjkz
Oh yeah, been there, done that.  My daughter has had over 30 hospitalizations for her eating disorder and depression.  We were finally able to get it up so that if she skipped a meal or snack, I took her to the ER after hours or her physician's office and she was tubed.  On her really bad days they just left the tube in because they knew we would be back.  Looking back I don't know how we did it but I knew she could get better and she did.  She just had a major relapse after years of doing very well and living life.  She is back to her starting weight and while not back to "normal" is eating and doing what she needs to do.  My daughter has a history of trauma which without a doubt complicated things and prolonged her recovery process but it can be done and she is living proof.  Just remember this is a marathon and not a sprint.  Recharge your own batteries every chance you get and find support for yourself and hubby.
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Enn
mama2c,
I was thinking about your d, and wondered, for later of course, not now, if your d does better with an audience. When we brought d home it was difficult. What we found was that when she was at school with friends or having them over to our home (rarely at the beginning) she ate without fuss. She ate as the others were showing her it was ok to eat. Just a thought. My d had wanted to be "normal" and wanted to fit in. 
It was a light bulb moment for me here, that having others around actually got her to eat! I learned that from the forum when someone noticed it in one of my posts. I had never thought about it. 
Thinking aloud in order to give some ideas that you may try.
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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mama2c
Thank you Scaredmom, Foodsupport_AUS, and mkjz for your thoughts and encouragement.  I agree that it is so important for her to build up more time eating regularly and not restricting or losing weight.  I know this is key.  I have been thinking about the NG option locally and I am going to ask our care team about it.  While we are waiting for a bed at residential, our care team wants to try again to help her eat at program and at home.  So we will give it another shot.  If this does not work, we will probably have her stay at the ED/psych unit until a bed opens up at residential.

I hope to update this post in the future with the great news of my D's recovery 😉 
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ValentinaGermania
Is there any chance you could ask the IP program she already was in to bring her back if she refuses to eat for tube feeding?
I know that some parents did that. They needed to drive there a lot of times at the start but once the kids learned that they need to eat either at home or get tube fed there it got better and the trips got rare...
Here it helped only to announce that we will go to the hospital again and tell her to pack her bag and some did really drive to the hospital but then the kids started to eat at the car park.
Keep feeding. There is light at the end of the tunnel.
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melstevUK
mama2c,

Welcome to the forum and sorry that you needed to find us.  As scaredmom above says, it can take a few hospitalisations before treatment can 'get going' at home. Also, transitions between treatment programmes or between hospital and home are occasions when things can be not as seamless or as smooth as they should be so maybe there needs to be more discussion between you and the clinicians before she leaves the unit/hospital.

You write:

"She says she will not eat unless there is the threat of tube feeding."

In effect she is telling everyone just how difficult it is for her to eat without some kind of threat over her.  Tina's suggestion above is sensible - the minute you bring her home and she refuses to eat, if you could take her back, that could be enough of a threat to show her that you 'mean business' and that eating will take place wherever she is. 

It can take trial and error until we find what works.  It could be helpful to discuss this issue with those involved with your d's care, and try and formulate a collective response which is going to ensure that your d is able to eat anywhere, and regularly.  We have all experienced different ways of getting to the point when we can make that happen and there is no one solution that fits all.

I hope you can find what works to ensure your d starts eating regularly and putting on weight - ideally at home, but with whatever support initially you need.
Believe you can and you're halfway there.
Theodore Roosevelt.
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Mamaroo
Welcome from me as well. My d also found it hard to eat at home, but was too young for the day program. She eventually found it easier to drink Ensures instead of eating and even then it took 7 weeks to get her to drink 6 ensures a day. By that time she had lost all the weight she had gained in IP and was nearly admitted again. 

Can you change your daily household routine to resemble IP? We had to present all her meals and snacks at the same time every day, day in, day out. When she wasn't able to eat, she had to rest on her bed for 15-30 minutes before I presented the meals again. Rinse and repeat. I gave her an incentive when she completed the meal. Initially I gave her an incentive when she managed to eat more than the previous meal even if she wasn't able to complete it. I took all pressure off by telling her to eat "as much or as little" as she was able to, but that she had to taste. Sometimes the first bite is the hardest.

Sending you lots of hugs 🤗🤗🤗🤗
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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mama2c
Hi there, Parents and Carers.  Oh, gosh, last time I posted in mid-September I was so desperate and scared.  We were waiting for a bed at a residential program and my 12-year old child would not eat.

Fast-forward 9 months and my (now 13-year old) girl is in a really good place 🙂

She spent three months at an inpatient residential program in another state, then received care for three additional months at an outpatient treatment program and was WR and happily discharged at the beginning of March of this year.  We've got her on what seems to be the right SSRI dosage - what a difference this has made.

She is hanging out with her close friends again, she is loving her new puppy, and feels ready to go back to ballet.  

But...she has lost a couple of pounds over the last 2 months, probably due to increased activity like swimming and going to the beach.  Her pediatrician is not worried at this point, but still...

And we are noticing tiny little hints of ED.  Choosing Slim Oreos instead of regular Oreos at the store.  Lot's of smoothie bowls for snacks (with granola and nuts, so that's good at least).  Requesting a lettuce bun for her veggie burger...(she ended up making a good decision to have an actual bun at that meal).  

She does not like us to ask her about her snacks, or provide suggestions for adding nutrition.   But we think we need to step in (just a bit) to keep her on course.

Any advice from parents of weight restored, seemingly recovery-focused  teens, and how to keep them on the path of recovery?   She says she does not want to go back to restricting, and we believe that is true, but we also know that ED is powerful.

Thank you
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Enn

When my d after WR started losing weight, sometimes just 0.2 kg or a bit more at a time our doctor told me the same thing. I have my spidey sense tingling and after a few pounds lost, I caught d throwing out her drink in the sink. It was ED. My d is now 15.
It has been 9 months  and your d is just 13. I did find that in our situation only since COVID D has a bit more autonomy. It has been just over 3 years to date for us.  I would agree with you about you stepping in to provide support . It takes years for them to learn portions and how to ensure they get their nutrition. 
You are right to note that she, your real d does not want to restrict again and ED is so powerful.

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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Foodsupport_AUS
It is great that your D is in a much better place. 
I am concerned that your pediatrician is not concerned. It is not normal for a teen to lose weight, particularly at teen who has had an eating disorder and needs to continue to gain weight into adult hood. It is entirely possible that your D is not losing weight deliberately. It is common for appetite cues to be off for some time, and they often have very high metabolic needs for more than 6 months post refeeding. The problem is this is a slippery slope. I would be very keen for that weight to go back on over the next 2 -4 weeks. You can work with her on this, but the more resistance there is the more likely you really need to do it. Even her asking you to not offer snack suggestions makes me think that you are very wise to be cautious. 
She may think she has this, but unfortunately many have been found to be wanting. 

If you haven't , or didn't watch Feast of Knowledge over the weekend there were some good presentations on why it is important to keep things going at this stage. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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mama2c
Enn and Foodsupport_AUS,
Thank you for your comments.  You validated my instincts to not become complacent.  Some days I want to jump up and celebrate victory over ED.  And (most) other days I realize that this will probably be a life-long struggle for her and all I can do is support her one day at a time.  

This message board is great and so helpful!

Thank you!

Best,
E
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PurpleRain
Hi! Great that your D is doing so much better, but but but, she should bexstill gaining weight, not losing, she is still growing, not only vertically. My D is 14, she has been WR+(I think a cushion is a great thing to have), doing really well, and yet my husband told me yesterday that he saw her brushing the salt off a Ritz cracker, the salt for god's sake!! She has her snacks (mid morning and afternoon) semi unsupervised, meaning we are around an keep an eye, or remind her if needed and check what she had, sometimes correct portions. She has been doing so well and now this, oh well we'll keep checking. I'm a bit worried about going back to school (still in lockdown, it will be a new school but with people she know from previous school). She has maintained her growth curve + for an entire year, we have seen great improvement in her conduct and mood (brain healing) since January, but at the saying goes, this is a marathon, do we keep feeding her 3 meals, 2 snacks, loads of calories (little bit less than refeeding, bearly) and supervising almost every bite in a much more relaxed fashion. You got this! Just keep feeding!
13 yo d started to eat "healthy" September 2018, she had a growth spurt a bit later, followed by tummy bug. She started restricting breakfast and school lunch in January 2019 (that we know). We succesfully refed at home.
I have found inner strenght, patience and compassion that I did not know I had.
Never retreat, never surrender
keep feeding
 
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