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.

Join these conversations already in progress:
• Road To Recovery - Stories of Hope
• Events for Parents and Caregivers Around the World
• Free F.E.A.S.T Conference Videos

Visit the F.E.A.S.T website for information and support.

If you need help using the forum please reach out to one of the moderators (listed below), or email us at bronwen@feast-ed.org.

Need to talk with another parent? F.E.A.S.T. parents offer peer support via:

Playball40
I just don't know. 

For those that have followed, we are just over two years in with my daughter, who is now 13.  Although she was diagnosed just after her 11th birthday, she has had symptoms of anorexia since she was 6.  It was progressive and she was deathly ill when she was admitted to the hospital at 55 lbs (4'10 or so).  We had NO idea how to treat until I found this site which has been a godsend.  She also attended a PHP program through Rogers which also was a big help. 

For about year now, I've let her drop from therapy (it just didn't seem to be doing much) and she hated the DBT 'classes' so we dropped those.  She still takes 30 mg of Prozac daily and battles (although not as badly now) with cutting and self harm.

The early days of re-feeding was difficult as you all have experienced, but as she started to gain, she really did get easily compliant.  Even today, she really doesn't question what we put in front of her to eat and she does snack and graze a bit like a normal teen (even if the amount is small - one or two chips, one pirouette...).  Her 'habits' aren't as bad either although she still cuts the ends off bananas (small cuts) and she still does not like the 'last sip of milk' - says it's too hot and prefers 'diet sodas' if she has a soda.  Other than that, she finishes her plate, eats pizza and McDonalds regularly, has desserts and snacks.  She also doesn't exercise a lick.  Not at all.  She used to run track, play soccer, bike ride.....She was a very competitive athlete. 

Her personality is still NOT what it was as a child.  She's no longer happy go lucky and seems anxious a lot.  She doesn't like talking or raising her hand at school (she used to love it).  She won't talk to strangers (used to have no problem with people) and she doesn't care about her grades anymore.  She used to be straight A's (major perfectionism).  I know I should be happy she doesn't stress about grades anymore, but I'm not - my oldest is a perfectionist too - but his manifests itself quite differently.  He's probably the smartest underachiever you would ever want to meet.  Yup - don't try, don't fail.  My daughter is going right down that path now.

So she's almost 5'1 now and started her period a while ago (although it's still not regular....it's the first year so that's not completely unusual).  Her physicals (blood work) are always good/normal.  But..........I CANNOT GET HER WEIGHT PAST 97.5 lbs!!  It's been there for months!  (I had it at 98.8 ONCE and it immediately went back down to 96.6.  She now hovers between 96 and 98 pounds no matter what she eats.  But she's getting taller so this is bad.  Plus her anxiousness/anxiety is still evident. 

Has her metabolism jumped AGAIN?  Really?  Or is she not really eating her lunch (she eats with the school nurse, but I know they're not that diligent in supervising).  She shows no 'signs' of 'restricting' in front of us, but is she just getting better at showing a stoic face?  I told her we may need to add back in the Ensures and she was NOT happy about that - she said she'd eat two Cliff Bars at a time if she had to - just not those stupid shakes.  She's willing to increase her portions - but honestly her portions are HUGE as it is. 

They say state not weight.  I believe in my heart she needs to weigh more to really be healthy - but dang, what am I missing/doing wrong here?  How can I get more weight on her?  As it is now, she eats considerably more than her twin brother who just jumped up to 5'4 and 140lbs in the last year.  Only one of her siblings (her half sister) is what one would consider skinny - although all of my siblings were (I was not skinny - nor fat - very muscular and athletic as a kid).   Am I wrong in thinking she should be gaining?

Thanks so much!
Caroline
Quote
EC_Mom
I don't know about the weight, how tall is she now and has she fallen off her historic growth curve?

But first: GREAT JOB!!! You sound so diligent and focused. 

If she is willing to eat two snack bars instead of drink an Ensure, that sounds like a fairly positive statement about "state" to me with respect to ED. Also the compliance with the other food, and your vigilance means she is getting great nutrition and normal teen eating (hooray for pizza).

Is it possible that her changes in mood and behavior, including not wanting to raise her hand or deal with strangers, is more a sign of normal puberty and adolescence? She might have some catching up to do emotionally/socially and maybe these are not signs of something underlying but just her way of being adolescent? Still, the self-harm is a big concern of course. It is so hard to know what is "normal" and what is ED and what is some other disorder or bad thing.


Quote
Playball40
Thanks for the responses.  Because she showed ED signs so young it was impossible to get a historic growth curve.  I have up until 5 yrs pretty consistent then it plummeted at 6.  Pulled it back up but it never reached the level it did when she was a preschooler.  From ages  9 - 11 her weight stayed the same then went down again right before the hospital.  That's my fear.  She is great at 'maintaining' her weight apparently.  She did increase 41 pounds in just over a year....but now it's just stuck.  She really HATES smoothies and shakes and when I try to get her to drink them she (or ED) throws at me 'well it's like you having to eat broccoli' (I gag at the smell of cauliflower or broccoli).  But she'll heat up a brownie cliff bar and put a scoop of ice cream on top. 
Caroline
Quote
mamabear
I lived this. Truly.

I would not trust that she is eating her lunch. Do you make sure the nurse knows exactly what is in the lunch every day? I would text every morning if someone else was eating with my daughter. Is she alone with her? No sweatshirts or sleeves? No garbage can? No napkins? Can you go and eat with her for awhile and see if it makes a difference? When we got " stuck" at weights, and it seemed we would get stuck at ten pound increments, it was always either all or part of lunch was being dumped/faked or too much independence/socializing was happening or SHE NEEDED MORE CALS- specifically fats. We fed through 8 inches, full puberty, and over a doubling of body weight.

I definitely think your daughter needs to gain a lot more weight. And frankly, as much as it sucks, you know that food is her medicine. So ramp it up.
My daughter needed often in excess of 6000 cals a day to get through puberty and growth. My little four feet 8 inch nearly 11 at the time Girl. She ate more than many grown male athletes. It didn't last forever but it took over 2.5 years at that high of a calorie is level to get her body through and then her metabolism normalized.

My daughter had a large milkshake every day after school. It was over 2000 cals. Hagan das or Ben and Jerrys, cream, and canola oil. You could cut it in half and give her a very manageable shake every day after school. Make French toast made with cream. Make browned butter and add maple sugar ( omg so delicious it's ridiculous).( 1 cup butter in Med sauce pan over medium heat, stir until milk solids turn brown, cool for 5 mins and add 1 1/4 cup maple syrup- bring to boil and remove from heat. Whisk frequently while it cools). Make fruit dip for fruit ( cream cheese, powdered sugar, lemon juice). Make high density granola and put it in full fat high cal yogurt and whisk in some oil. Add butter and oil and cream all over the place.

It's hard. I know. But it works.
I remember all of the times of thinking " how?why? I don't want to..." and then just putting our nose to the grindstone and DOING. So ramp it up. Expect her to complain. Expect resistance. Upticks in behaviors. But let her know you are once and for all going to kick this to the curb. You can do this! If my girl did it so can yours!

Persistent, consistent vigilance!
Quote
Playball40
Of course you are right Mamabear.  It's gotten too easy for ALL of us to get complacent, even me. 

I'm not a very good eater (in that I'm stuck on just a small number of foods and prefer drive thru over cooking - in fact I despise cooking), so I haven't learned as much as I could about things.  I'm sure my daughter would like granola (she LOVES every oatmeal available).  Can you tell me how to make 'high density granola' (forgive me if that sounds stupid).

And a conversation with the nurse is way overdue, I think.  It's too easy for the school to forget or ignore her 504 when she "looks" healthy enough. 

Caroline
Quote
Playball40
She also likes to get out and go for 'drives' with me (we jam to the Hamilton CD).  I'll 'drive' to Steak & Shake for an M&M shake, instead of 7-11 for a Diet Coke from now on.  She ate almost all of my M&M shake last time I was there.  
Caroline
Quote
mamabear
Oatmeal:
1 cup heavy cream. Heat to boil and add 1/2 cup quick oats. Simmer and stir a few minutes until cooked. Add in butter, raisins,Brown sugar, dried fruits, honey... that kind of thing. EASY 1200 cals and a small portion. I used to make this at like 5:40 am and spoon feed it to my D in the summer so she could roll over and go back to sleep.

Can't find my granola recipe... I will post it if I find it. I'd make your own shakes... get those cals UP!

You can do this. It's so hard. I know..

Persistent, consistent vigilance!
Quote
mjkz
That actually happened to my daughter a lot.  She would gain a bit of weight and then plateau at a certain weight.  It took tons of calories to get her to start gaining again so it really sounds like you need to pour more calories in to get her weight jump started.
Quote
4kids1dog
I have been using the CDC (Centers for Disease Control) website which calculates BMI for children using age, height, and weight.  When I plug in 13 year old girl, 5 foot 1 inch and weighing 97.5 lbs the website says that is a healthy weight and BMI for her age.  The BMI calculated at 18.4 whether I used age 13 or age 14.  Also said she would be at 45th percentile for 13 year olds and 36th percentile for 14 year old.  Based on this, I would think her weight is fine for now.

My experience with athletes that have been injured and have to miss a season/can't participate is they get depressed because they miss everything they loved about competition.  Glad she is getting medication because this could be an issue for her.

Here's the link to CDC Child BMI calculator 
https://nccd.cdc.gov/dnpabmi/calculator.aspx


and here is the result for using age of 14 year old (most conservative since I don't know her exact birthday)

Information Entered

  • Age: 14 years 0 months
  • Birth Date: Wednesday, February 05, 2003
  • Date of Measurement: Monday, February 06, 2017
  • Sex: girl
  • Height: 5 feet 1 inch(es)
  • Weight: 97-1/2 pounds

Based on the height and weight entered, the BMI is 18.4, placing the BMI-for-age  at the 36th percentile for girls aged 14 years 0 months. This child has a healthy weight.


LASTLY, I am 5 foot 1 inches and never weighed over 100 lbs until my SENIOR year in high school.  When I was married 8 years later, I weighed 105 lbs.  Being married means, well, you usually gain weight right?  I gained another 10lbs and was 115 lbs. until age 30.  Add children and ended up with 10 more lbs so now I'm 125 and I've never felt my weight was too low.  I guess my point here is that she will probably gain some weight naturally as she goes through different stages of life.


Quote
Torie
(4kids1dog) ...here is the result for using age of 14 year old (most co
nservative since I don't know her exact birthday)

Results: Based on the height and weight entered, the BMI is 18.4, placing the BMI-for-age  at the 36th percentile for girls aged 14 years 0 months. This child has a healthy weight. 

36th percentile is OK for some, but not enough for many.  Depends on the particular kid.

To me, it is suspicious that she is stuck just under 100 pounds.  Personally, I'd try really hard to push her  over that - they tend to fixate on round numbers, and 100 is about the ultimate.

You're doing great.  Keep going. xx

-Torie P.S. Are you buying premium ice cream? Makes a huge difference.

"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Quote
mamabear
4kids1dog

I'm going to go ahead and let myself go here.

You are wrong. I totally appreciate what you looked up etc, but it is an inherently flawed system.

I'm kind of now an " old timer" here in my 7th year post AN diagnosis of a 10 year old.
I have now read hundreds of people's stories and talked with many many families who have gone through this. I have actually helped many families behind the scene navigate through this, specifically with this age group. I have talked with ton with people like Laura Collins and Harriet Brown. I try to keep up on current studies and research into ED.

BMI IS NOT a useful tool in eating disorder treatment- specifically setting target weights TOO LOW. Many people spend unnecessary YEARS of life fighting for recovery at too low of a weight. The inherent engrained " fear of fat" in our medical system has led to this well..... fear of fat/obesity.

" normal" kids bodies work totally differently than ed kids. Normal kids gain before they grow taller. Gain before they get breasts and begin periods. ED kids don't. ED kids can lose weight on a dime. ED kids will lose as they grow if their bodies do not have enough reserve and enough calories, specifically fats coming in.

In fact, I can say that I know not one single person who's kid recovered at the goal weight given by a professional. A BMI of 18.5 is not going to get a kid to recovery. I am talking full recovery. Every person I know has had to get their kids weight well above by 10,20, 30 pounds where their " healthy" weight was set. There is a saying here on FEAST: state AND weight matter. If ED symptoms are still present and gradual improvements are not seen then 99.9 percent of the time more weight is needed .

My daughter was initially given a " healthy weight" that put her at a BMI of 18. She was a very sick puppy. When we got her 10-15 pounds higher her growth kicked in. 8 inches in about 18 months. Full puberty. And the entire time we struggled to keep up. We never really were able to get a cushion because it all went to internal changes and growth. Her metabolism was jacked up- which is also normal in kids in this age range with AN. It can take years to get through this and for the body to normalize.

My daughter is now five four and 142 pound. She looks like a zillion bucks. She is curvy and gorgeous and her BMI is at the far right of her " healthy weight".

Yes everyone is different. Yes we all have different body types. But the bottom line is kids are supposed to continually gain weight. Playball's daughter is not. She is stagnant- which means she needs more. It really is that simple.

Don't get caught up in BMI and statistics. Follow your gut. Follow the progress or lack there of.

There was a post on FB today with a just released study saying that mental health conditions like OCD, anxiety, and " autistic traits" are still very common in " recovered ed" patients but guess what they used as the BMI criteria? 18.5. At 18.5 my daughters exercise compulsion was still insane and OCD rituals... had gotten a lot better but still very present. I had to sleep with her and watch every crumb go in. Laura Collins- the founder of this site, has been fighting for 12 years for clinicians to set weight goals higher. To not focus on the faulty BMI measurements. They do not apply to normal people let alone ed kids. I'm 5 feet 8 inches and 180 pounds. I wear a size 12. I'm active. I play tennis and ski. I feel great! I love my body! I feel sexy and healthy! And I don't give a crap what the " BMI " scale says.

So feed on. Food is medicine. My daughter has been fully recovered for over 3 years now and it is a sweet place to be.
Persistent, consistent vigilance!
Quote
mamabear
https://www.facebook.com/groups/ATDTCarerSupportGroup/permalink/627755087416433/

Not sure if this works here or not....

Anyone help me?
Persistent, consistent vigilance!
Quote
atdt31_US

I know you said, because she was restricting at such a young age, that growth charts are not as reliable for you.  But …  three inches growth in two years, especially with the large weight increase, seems odd to me.  I know I have read on here how kids lose weight when entering and going through a growth spurt -- i wonder if this could be happening with your d.  If you have the historic heights and weights, you could put them into mygrowthcharts.com and then also enter in bio mom and dad info -- if you go to the endocrinology growth chart it will show you if her height is within the expected range given her parents' info.  I sure don't know, medically, if the three inch height gain was to be expected, but I think it should be much closer to six inches in two years, especially because of the weight gain.  Maybe apples to oranges, but my d, whose bmi is roughly 12.5, has grown 2-3 inches every year, even at that low bmi (true, she never experienced a weight loss, just has trouble gaining to normal levels).  My d is younger and pre-puberty so maybe it slows down?  Anyway, the height caught my eye in reading your posts.


Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth.  UPDATE:  July 2019 diagnosed with PANS. Dr. said likely started first PANS episode at less than 1 or 2 years of age.  On long-term daily prophylactic antibiotics. BMI now about 16 after period of intense refeeding prior to PANS dx,  followed by stagnation as we sort out what is next. FWIW ED-D is a fraternal twin and we have no other kids.
Quote
Kali
Hi Playball

Quote:
She did increase 41 pounds in just over a year....


That is an amazing achievement! And if you can get that much weight on her in a year you will be able to continue to help her gain. Just keep going and making lots of nutritious and calorie rich food for her, since as you say she is eating well. She may have plateaued for the moment because as you say she is growing taller and then will start gaining again. 

Are there any loopholes you can close up? 

Kali

Food=Love
Quote
mnmomUSA
Mamabear is exactly right. BMI is not a great indicator of health in a person with an ED.  I'll just give you my personal example, which supports what mama bear is saying.  My D was a great eater, always, until restrictive anorexia hit right as she turned 13.  I have her height/weight charts since she was a baby, and she tracked somewhere (always) between the 25th and 30th percentile for her height.  A tall, slim child she always was.  She and I are the same height, and when I was her age, I weighed 118 pounds soaking wet...my BMI was probably somewhere around 25th percentile.  So, one would *think* she was destined to settle in around the 25th-30th percentile for BMI when she was "recovered."

WRONG.  WRONG.  WRONG.  So wrong.  I let that sort of thinking color my through process for far.too.long, and it left my daughter languishing for at least a year, maybe closer to two years.  She was eating ok, blah, blah, blah, but she was not very independent.  She would eat what I asked her to eat, and generally without much fuss, but I could feel that ED was right there, below the surface.

So, I added weight.  And, now she is pretty darn close to the 50th percentile.  She looks fantastic.  But, more importantly, she acts like a completely "normal" teen.  For her snack (which she gets herself with no prompting from me), she will have "homemade" cookie dough (butter, brown sugar, flour, vanilla, chocolate chips, white sugar)...OMG.  Who does that?  I'll tell you who, a NORMAL teen does that.  Normal.  She would never have done that at BMI that placed her at the 30th or 35th percentile for height.  No way.  It would be me bringing her a snack, and her (with a deep sigh) eating it.  Completely different now.  She gets up and makes her snack.  Sits down and eats it.  She asks "how long to dinner, because I'm hungry."  She eats pizza with cheese.  She eats dessert.  She grabs candy out of dish and doesn't say "can this count as my next snack?"  Obviously, she is no longer obsessing about each and every morsel of food going into her body.  :-)  

Anyway, it sounds to me like your child is still underweight FOR HER.  It sure as heck is not going to hurt her to gain 4-5-even 10 pounds.  She STILL would be at a so-called "healthy" BMI, and she just might be better mentally.   I'd bet on it.


D, age 18, first diagnosed March 20, 2013, RAN, at age 13 Hospitalized 3 weeks for medical stability. FBT at home since.  UCSD Multi-family Intensive June 2015. We've arrived on the other side.  :-)  D at college and doing great!
Quote
Playball40
Quote:
She would eat what I asked her to eat, and generally without much fuss, but I could feel that ED was right there, below the surface.


This is exactly how I feel. 
Caroline
Quote
ed_newbie
Hi Caroline,

I sometimes dread cooking and the cleanup afterwards and I really don't have time on weeknights to cook elaborate meals.  So here is a bit of practical advice:

Check the freezer section of your grocery store for high fat, high calorie meals you can pop in the oven or microwave.  One of my favorite's is Trader Joe's Mac and Cheese.  I think there's something like 15 grams of fat in a one cup serving!  

If you can boil pasta, you can buy a prepared alfredo sauce which is high in fat and calories (apply liberally) and/or serve with meatballs (Trader Joe's also has decent Italian meatballs in their frozen foods aisle).  

Ice cream sundaes are easy to do at home, are fun to make and you can really load up on fats and calories if you buy the highest fat ice cream, fudge sauce, nuts, etc.  Why not give her a sundae every other night and see what happens?  She might like it better than a shake. 

So there are definitely quick and easy options that don't require poring over recipes, a huge time investment, or a big clean-up afterwards.  

I also use paper plates during the week sometimes so I don't have to wash any dishes!

"Lineage, personality and environment may shape you, but they do not define your full potential."    Mollie Marti  

ed_newbie

15 yr old d diagnosed with AN late December 2015 at the age of 12 after a 23 lb weight loss during prior 3 months. Started FBT/Maudsley at home on Christmas Eve with support from amazing local nutritionist specializing in ED and trained in FBT. WR Feb 2016 and pushing our way through puberty and rapid growth.
Quote
Torie
ed_newbie wrote:
 (Trader Joe's also has decent Italian meatballs in their frozen foods aisle).  


Another great thing about frozen meatballs is that you can just take out the number you need and pop them in the microwave (after wrapping in a paper towel).  So easy!   I find that every grocery store has ones that taste pretty good, too. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
Quote

        

WTadmin