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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qdong
Hello everyone here! I found this wonderful forum and joined a few days ago.

My D was diagnosed with AN at the end of  this February, and began PHP FBT at Overlook hospital, NJ immediately.  My husband and I decided to pull her out of the program temporarily after 3 weeks due to the pandemic of COVID-19, she only gained about 3lbs there. I have been feeding her at home since then. Five weeks have passed, she has barely gained 2 lbs. I have been giving her about 2000 calories a day, increased to about 2500 calories last week. It is getting harder and harder to feed her, she has become very irritable and even violent sometimes, screams, curses and throws things a lot of times. Now I am considering sending her back to the PHP program which she was in, but I am very worried about her and the rest of my family contracting COVID-19, especially she is not weight recovered and her heart rate is still low. Besides I am not happy with the therapists and dietitians there.
Since I was new to ED, I had no knowledge of it at the beginning the PHP FBT treatment, and had little knowledge of it at the end of 3 weeks' program either! All I was told was to feed my D 3 meals and 3 snacks a day. I wasn't told the calorie counts my D was supposed to have per day, and wasn't educated on the tremendous anxiety re-feeding will bring to my D and the rest of my family.
There are lots of parents here being on the ED treatment path for a long time. I would like to ask your advice on whether it is worth risking my D contracting COVID-19 to send her back to the PHP program? I would also like your opinion on how you would rate the program based on so little knowledge I have gained from the staff in the program.

Thank you very much!
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Enn
Hello and welcome to the forum. I hope you find the support and information you need to help your child.  Please read around the forum EDucation is a huge learning curve. FEAST-ed.org and Anorexiafamily.com have great resources. 

Please do not be afraid of taking your child or anyone to the hospital due to concerns of getting COVID19. I say this because here we are seeing people NOT going to hospital for things like heart attacks, severe diabetes complications and other things and by the time they get there some patients have been in extremis or are more ill than if they had come in sooner. If your D is not gaining weight and the heart rate is low, I would seriously consider it. If you have misgivings about her last team, then you may need another. 

Hospitals are safe  as the majority of all cases of COVID  all over the world  are at home recovering. Only the sickest of the sick are in hospital. There is a higher risk to get COVID via contact  with a surface you touch anywhere in your travels and then if you touch your face than the hospital in general.  If she is medically unstable the perceived risk of COVID compared to  her risk of medical issues is low. And also if she were to get COVID, where better would she get 24 around the clock care and surveillance? 
As for the number of calories, we needed to get over 4000 cal per day and the upset she is showing now is expected as you challenge the ED.

I hope there is something there that is helpful to you. Please ask all the questions you have. We all do wish to help. 
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

Hi qdong, 

Welcome! 
I'm thinking you are in NJ since you mention Overlook? (so am I) 

Unfortunately, as you most likely know, NJ is the state which at the moment has had the highest number of deaths due to COVID in the US for the past couple of days, and I believe that Overlook is treating covid patients. We only go out to go food shopping every 10 days or so and people are being very careful however the infection and death rate is of great concern. Like us, you have most likely been on lockdown for nearly two months and things are still dire. So I understand your concern about sending your daughter to a program located in a hospital right now. It is not without risk. We have cancelled all dr. appointments. In fact our doctors cancelled them for us and they have not reopened yet.

I do have some personal experience with the Overlook program. My d was deemed too ill to be treated there when she was assessed however I did think that the MD, who was trained in Eating Disorders, was excellent, and knew which tests to administer.

Ok so she has gained 5lbs since you started in February? Can you let us know how much she weighs and what her height is at the moment? How much does she need to gain in order to be in a range which would reflect her historical growth chart? How old is she? I'm trying to get a feel for how dire the situation is, since there is a real risk here due to covid. I'm wondering whether parents who have refed at home can help you make some changes in order to bring her weight up at home, and not risk exposing her, or whether her weight is so low that she may need hospitalization or a higher level of care than she is now getting because she is in a very compromised situation and it would be better to have her rejoin the program rather than risk her health due to the anorexia. And I'm also wondering if you can access the Overlook team by telemedicine. 

Have you tried adding benecalorie to her meals to bring up the calories? It can be added to rice, soups, sauces without any taste and a small container of it has 350 calories. Walgreens has it for order online.

I also want to recommend a book: 
When your Teen has an eating disorder by Dr. Lauren Mulheim

If you think it would help to speak with someone on the phone I'd be happy to talk with you since I think we live pretty close to each other and I am familiar with the situation here as well as some of the treatment options. I have also guided a child through anorexia and she is recovered. Click on my name and email me if you would like to do that.

You mention her heart rate. How low is it?

Warmly,
Kali



Food=Love
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Foodsupport_AUS
`Welcome to the forum, sorry that you have had to find you way here. I understand your anxieties regarding COVID, and exposure in PHP programs. At the same time it is important to maintain physical safety. Your report of a low heart rate rings alarm bells that she may actually require hospitalisation and medical stabilisation as mentioned above. At the very least it sounds like you should be contacting an ED clinician for assessment and advice. 

It is great that you are managing to increase her intake, and her anxiety and distress is expected. If she is medically safe to stay at home, of course increasing her intake at home is the best course right now, so long as you can manage things. Some are just too ill for this to happen, they cannot eat enough, or at all to restore health without a lot more support than can be had at home.
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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qdong
First of all, I really appreciate all your prompt responses.

We live in central New Jersey, Overlook hospital is very close to us.

My daughter will be 14 in the middle of June, she was diagnosed with AN restricting type when she was 13.5. She is one of my fraternal twin girls, she had always been the bigger one and eaten more than the other twin until January this year.  Both my twins are thin since they were born, but they have been healthy and grown normally until a couple years before, their growth curves started to flatten out. It didn't concern me too much because both of them practice rhythmic gymnastics around 14 hours a week, rhythmic gymnastics tend to delay puberty.  My D with AN weighed 85 Ibs and was 5'1" at her annual physical on Oct. 29, 2019, it was her highest weight. Our pediatrician told me that day that she started to grow more than the last two years.  I noticed she lost 6 lbs in the middle of January and took her to see her pediatrician, her heart rate dropped to lower 60s from 70s it was at in Oct. last year. By Feb. 21 she lost another 3 lbs to 76 lbs, her heart rate dropped to 40s. Our pediatrician referred us to see a specialist in adolescence medicine at Overlook hospital at the end of Feb., where my D was diagnosed and admitted to PHP immediately. She was put on a Holter monitor the 2nd day she was at PHP, her lowest heart rate was 31 during her sleep. According the specialist my D was qualified for full hospitalization, however they kept her at PHP.

When I pulled her out of the PHP, she weighed 79 lbs, heart rate at lower 50s. She weighs ~82lbs now, her height is still 5'1", most of the time her heart rate is about 60 when she sits down. Our FBT therapist at Overlook told me that they would not tell us my D's target weight until she reached it. 

During the 5 weeks at home we had two FBT virtual sessions with our FBT therapist, which were hardly useful. My daughter could have one to one sessions with another therapist since the 1st week, however we declined because my D told me they were barely beneficial. As my D's anxiety gets much worse, I have been requesting one to one therapy sessions for my daughter since the 4th week, but they refused to provide it to her unless my D goes back to the PHP program full time.

I found benecalorie from this forum a few days ago and have ordered some.

Kali,

I would love to talk to you on the phone. How do I get in touch with you?


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Foodsupport_AUS
@qdong you can email Kali by clicking on her picture and following the link. 

From what you write it sounds as though your D has not been having much monitoring of her physical well being over the last few months. Slowing of growth in children is not actually normal even in those who are physically active. The main reason this occurs is because they are not quite eating enough to manage the demands of both exercise and growth. There has been some evidence this may adversely affect bone health later on in life. It sounds like your D is at least stable but she probably has a lot more growth to go, she needs to restart increasing in height, along with going up and above her previous weight and of course she will need to start having periods as well. 
It does seem a shame that they are insisting on one part of treatment to get another. Your D may benefit from that one on one support (mine did) whilst at the same time continuing with her feeding and growth. 
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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Torie
I can understand why you are torn between trying to refeed at home and taking her back to PHP.

Here are a few things I would consider in your shoes:

1)  Are you able to prohibit exercise at home?  That is important especially since her how heart rate suggests her heart is already strained.

2)  Are you still using the Holter monitor, and if so, how is her heart rate during the night?  

3)  Are any family members other than your d at higher risk for complications from COVID?

4)  Is / was anyone monitoring her orthostatic pulse and blood pressure?  This is done by taking the measurements while she is lying down and then again after she stands up.  That's really important.  

I am optimistic that we can help you increase her intake at home so that she starts gaining weight at a good clip, but that is never easy (to put it mildly).    As FoodSupport said, most people prefer to refeed at home if possible, especially during a pandemic.  The fact that you were able to get a couple of pounds on her is a good sign.  It's a steep learning curve, and you are learning more every day.

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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Enn

Her BMI is 15.5 
5 foot 1 and 82 pounds. 

Weight gain should be one to two pounds per week. What is she eating now? 

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
Good morning, Qdong. I've emailed you with my phone number if you would like to talk.

warmly,
Kali
Food=Love
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debra18
Hello. My daughter is a similar age (14) and I am nearby in ny. She became ill at age 11 and I refed her at home with medical monitoring. She never received any therapy or residential treatment. The video on you tube called "eating disorder meal support" was very helpful. Also Eva Musby and D Julie o Toole have very helpful websites and D otoole has medical guidelines in her book called "give food a chance". Eva musby also has a book which is very helpful.
 My daughter needed 2500 calories originally and than I had to increase to 3000 calories when weight gain stalled. In my experience, the actual weight number is not that important. But it does give you an idea of how much they need to eat as your daughter will still need to continue gaining weight for the next few years. This is a long journey and not straight forward. I have been supervising meals for two years for my daughter. Milkshakes with ice cream and heavy cream and smoothies were very helpful to get in calories. You can contact me also through this site. 
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mamabear

Hi there-.

Here are my thoughts.First, I would at the minimum get her vitals and labs done and make sure her heart is ok. 

 Your daughters restriction hit at the exact time when she should have been gaining a large amount of weight and growing. You cannot base her needed weight goals/gains only on her growth chart of the past few years. Also, since it sounds like she’s always been very thin and very active, it is possible that she (And her twin) has been underweight for many years. Have you had her growth charts looked at? The majority of doctors and dietitians etc do not look at the growth chart in its entirety- looking at patterns in time etc. 


Your daughter needs MUCH higher calories. Dr.Peebles from CHOP ( one of the top centers for adolescents) recommends 4000 calories daily minimum for several years. Your daughters body will become hypermetabolic. This is normal.  Once her body can trust that it’s getting fed regularly it will first repair internal organs and muscle. Then it will start to actually make up for lost time in growth and hormones/puberty. All of this takes a ton of energy. My daughter needed 6000 cals a day from ages if 11-14. It is completely normal for kids in this situation at this age to need 4000-6000 plus. My daughter grew 9 inches, went through puberty, and had to morph into a woman. She’s now almost 20- in full recovery for many years. It was hardcore and it was worth it. She is completely free of ED. 

The number one biggest mistake made by almost all ED professionals  is setting weights too low. It will keep someone in permanent ED purgatory. And frankly in situations like your daughter, there really is no “ goal weight” bc she’s going to grow and change massively. You feed to FULL NUTRITIONAL BRAIN RESTORATION. And you will know when that is happening because of significant improvement in behaviors etc. 

I have written 2 pieces that are now in the “ expert by experience” blog that may help you. One is on puberty called “ The Long Game” and one is “ 8 hours from any treatment provider we had no team, we were the team” . For some reason I cannot put a link in here. 
Do you have Lauren Mulheim’s book? That is an incredible and easy to follow book. Eva Musbys is great also. 

ED wants our kids dead. And it will do everything it can to intimidate us, to play on our maternal instincts to soothe and “ minimize anxiety”. But the reality is we have to be able to tolerate their distress. We can not negotiate with the beast trying to kill our kids. The only response to anything ED says is “ hmm hmm. I’m sorry how hard this is. Now take another bite. The quicker you finish the sooner we can paint our nails....watch that show....play a game....etc” 

I know that much food sounds so impossible. But I promise you it’s not. I know bc we did it and I’ve been around now ten years and know thousands of others who have too. 
There are so many ways to get calories in. 

For example: my oatmeal. I used to make this on weekends and in summer and spoon feed my daughter at like 5:30 am so she could go back to sleep. 

1 cup heavy cream (800 cals)
1/2 cup oats 
add butter, brown sugar or maple syrup, Nutella or peanut butter, raisins, dried fruits, etc. 
EASILY 1200 plus calories in a small serving. 

milkshake every day at 3:30
1 cup cream 
container of Hagan Das or Ben and Jerry’s 
1/3 cup coconut cream or can add canola oil 
This has well over 2000 cals but is a bigger shake. You could cut it in half as well. 

Butter can be melted and added to just about anything. Example: coat her noodles with olive oil. Add melted butter to her spaghetti sauce. Right there you can easily add hundreds of calories. 

crushed nuts can be added to lots of things too- without detection. 

If I can be of any help- please feel free to email me. 
My heart goes out to all of you dealing with this especially during Covid.


 

Persistent, consistent vigilance!
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qdong
Thank you all for the valuable advice and suggestions!

I am inclined to re-feed her at home this time, I need some good therapists, who can do one to one counseling remotely.

Torie,

I can prohibit her exercise at home. She is not monitored by anyone now, she wore the Holter monitor only once. I will order a blood pressure monitor soon and start  monitoring her orthostatic pulse and blood pressure. The rest of my family are not at high risk for complications from COVID.

debra18,

It is extremely hard for my d to drink milkshake or smoothies those sort of things. I had a 3 hours' standoff with her over a cup of smoothie a few days before, in the end I had to give in, it was past 1 am. I will continue offering to her.

mamabear,
I read your blog before, it is very helpful.  I like your examples of the food, will try them.
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SupermanR
Dear Caregiver, it does get better and I admire you for the stand off, you need to be stronger than the ED and uncompromising.  You will wear it down no matter how long it takes.  The first weeks are the hardest.  Our experience was we had to turn our home into a ‘home hospital’ where food was non negotiable after which consumed only then could normal life (tv, hobbies, anything actually) could return - even in our case hiding anything which was sharp or readily break-able, as our 13 y/o daughter was so resistant (well her ED to be precise) I’m sorry to say smashed a few things up as she was so angry her ED was so vigorously confronted.  We did not blame her (but asked her to clear it up) but did blame the ED.   But through compassionate assertive patience we got there.  She’s now shining and back to her pre-ED self.  3-4 milk drinks between meals involved many a stand off / hours of carrot and stick encouragement but once taken (after many spilled/thrown etc only for us to pour and present another until consumed) as dairy is quickly metabolises meaning her brain came back.  Our experience was purely re-nourishing brought her back - therapy was useless/irrelevant until 6 months re-feeding then  another 6 months post Weight Restoration when her brain recovered fully and even then purely nutrition was the cure.  When our daughter did not eat initially we were not shy to go say we had to then go to emergency A&E and use it as leverage (she did not want to go to hospital, pre Covid.  I agree hospitals quite safe now too so Covid would not put me off).  Best wishes keeping the pressure up and through persistence and unrelenting no compromise you will save your daughter from ED.  I agree Eva Musby’s book and advice are worth gold.  Thinking of you and sending prayers of hope and strength to wear down the ED with love, tenacity and you all being stronger than it.
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Kali
Hi Qdong, 

Here is a pdf with the medical guidelines from the AED (Academy of eating disorders guide to medical care for eating disorders) so you could read more about them since you are at home with your daughter refeeding.

warmly,
Kali
Food=Love
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