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

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wewillpersevere
Hi everyone!

It's 6 A.M on a Sunday, ED's definitely making even sleeping a difficult task...

First time I'm posting, though I've been reading like a mad woman for the past month or so.

My 12 y/o was diagnosed with AN during October (when she was still 11), but had begun restricting since September, and probably began exercise purging since June... Luckily, she never stopped eating completely, so the re feeding has been relatively easy (that relatively is important - the demon lets it's face show a lot). But I'm really concerned about the following:

My D has been showing signs of OCD behevior since early 2014, in the form of excessive worrying. She would get super worried over tests and over watching TV (in as watching "too much" or playing "too much wii", which had her not wanting to look at the screen for more than a minute) when things started to get bad (sept), getting worse as her exercise purging went up (this was hellish around 3 weeks ago when she would have a hard time eating, would not sit down for a second (not even to pee) and I had NO WAY of distracting her because of this and the screen thing. This had gone down (got her to sit and watch a little TV around three weeks ago) for around ten days, she's been at approximately 3000 cal a day for aprox four weeks now, but around two days ago the OCD stuff has gotten stronger, but now it's just a lot of worry, she's scared of "tomorrow", she says she wants to shut her brain off for a while, it breaks my heart!! I'm wondering: should I up her calories? I really have the sense that this whole thing may have begun early 2014, the OCD behaviors being an early sign (my daughter recalls starting to get worried with weight and food since then). She's not weight restored yet, we have a way to go still, may this be it? We went to the GP last week (9 days ago) and she was at 32.5 kg at 1.47 mt (sorry, don't know the inches lb thing). So sad, scared and confused...!!! Any ideas? I have sooooo many other questions and ideas, will be coming back (a lot) for support. Good luck to all!!
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wewillpersevere
Just wanted to correct myself: we've been at 3000 cal for around three to four weeks
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IrishUp
Welcome, wewillpersevere! I am sorry that you had to find us, but I hope the forum can be helpful to you. It sounds as though you've made a terrific start - congratulations!

I think your instincts are likely spot on, and that it is very probable that the disordered eating started well before things got to the point of diagnosis. As was reported in the Minnesota Semi-Starvation Study, undernutrition can cause intrusive  thoughts and anxiety all by itself, even in healthy people who do not have propensity towards ED, so your notice of her mental state change is very likely to have been an early sign. This would also be entirely consistent with everything reported in the medical literature which generally reports symptom onset1-2years before diagnosis, and is borne out by other stories here. Some years ago someone started a poll asking how long before diagnosis were people seeing signs of the ED; at one point I tallied the reports, and the average was about 18mo, if I'm remembering correctly.

As for whether you should up calories, I think it is likely worth doing. First, there is no known "downside" to faster weight restoration - in fact, the body of evidence is that being able to get back onto baseline growth trajectory quickly is a positive predictor for good outcomes, and it minimizes whatever physical harms the restricting may have already started. But more than that, it is very common for calorie needs to increase as refeeding progresses from the initial weeks.

Starvation causes growth to slow or halt as "non-necessary" bodily functions are curbed & metabolism is dialed way down in order to preserve calories for needed functions like our brains and hearts. Work done by Marzola et al, of Dr. Walter Kaye's group at UCSD has shown that once you start refeeding, there is a sort of rebound effect, if you will, where the body goes into a hypermetabolic state, with caloric increasing dramatically (likely to fuel tissue repair and resumption of normal growth).


1471-244X-13-290-4.jpg 
from 
http://www.biomedcentral.com/1471-244X/13/290/

The graph above is from an adult subject, but if you look at the table below, you can see how daily caloric needs went from ~1200kcal to 4500kcal - and this was a person who was not growing, like a 12 year old is!

Needing in excess of 3000kcal/day is actually kinda the norm for refeeding. Physiologically, it makes sense that after 3 weeks, her caloric needs are going up, both because of the dymanmics of nutritional rehabilitation and healing, and because she is a growing child. If her pattern has been that undernutrition = intrusive anxious thoughts, and that is a symptom you are seeing right now, it makes sense to add calories, and see how things go.

You can try adding extra fats to what she is eating already - 1 more tablespoon of butter/canola oil/ HWC (heavy whipping cream)/other fat of choice can be added to breakfast, lunch and dinner without changing taste or the "footprint" or food volume (often beneficial for keeping ED eating anxiety down to a managableish roar!), and will net you nearly 400kcal extra a day.

You can also try soothing and distraction when she starts perseverating on anxious thoughts -suggest a game or quiet  activity, bundle her up in a warm blanket and watch a favorite movie or show, put on her favorite music. Seeing what will help interrupt those thoughts is trial and error, but you are the expert on your d, so pick what you think is likely to work first, and see how it goes. 

Good luck, and let us know how things are progressing!



IrishUp
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Torie
Hi WWP - so sorry you needed to join us here. I don't think the connection is well understood between ED and OCD, but for sure there is one. Yogurt Parfait's very young d has been battling OCD, and I know there is a particular book she recommends - can someone think of the name? The author might be something like Chansky maybe? Parenting the Anxious Child? Gosh, I can't remember. There are a few books she has mentioned - You might want to message her off-list because she is a wealth of information in general and for the OCD/ED combo in particular. 

Sometimes the OCD melts away with brain healing (adequate time and nutrition) and sometimes it requires treatment.

It's great that you are on this and already successfully getting your d to eat more. Please remember that it does get better.

xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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mdmama
Hi, Wewillperservere:

I don't have advice on the OCD issues, but I just wanted to say hello from someone with a D so much like yours. Mine has only restricted, not purged, but she was diagnosed with RAN on 11/4, a week after she turned 12, and has been restricting since at least May. I feel like our girls are on the same timeline, and we too are feeding about 3,000 calories a day right now. (My D was hospitalized during Thanksgiving week, which jump-started her recovery.) 

Do you have other children? Could they be of help with distracting your D during her OCD moments? 

Thinking of you and hoping for improvement in your household.

_______
D diagnosed with AN November 2015 , the week she turned 12. Gaining slowly but steadily, fingers crossed...
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wewillpersevere
Thanks so much to all of you for writing!! Today my d had an awful meltdown, just horrible, saying she didn't want to live anymore, that she wanted to leave this world; it was really terrible, just when I was thinking things were getting a bit better (wishful thinking...!!). The worse thing (or best thing?? Who knows...?!) is that her meltdowns now are really not around food, but about the intrusive thoughts in her head... *sigh*

Although this shouldn't really be an issue, but I'm also seriously gaining weight and feeling super bloated (since she is obsessive that I eat as she does). Never been worried about weight, but my pants are starting to shrink for the first time!! LOL

I'll get back to all of you soon since I'm helping her to bed now; thanks so much, will get back to each of you!!
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Psycho_Mom
Dear We willpersevere:

Welcome. So sorry you had to come to this forum, but glad you did. 

As to how much to feed: enough so that your child gains about 2 lbs a week. (1 kilo). That's why you need to weigh weekly, so that you can adjust as necessary. And you will need to adjust; needs change as the body readjusts.

As to your pants not fitting: Happened to me too, I sympathize. But yeah, I have a new perspective and my pants size is a lot, LOT farther down my list of priorities now. In fact, I like to consider myself as not bigger, but more powerful. How's that? You are so much more dang more powerful than you ever though you were, you even need bigger pants!

As for your d being tormented by worry over tests or sittign down to watch TV, oh man, been there. My d studied and studied and studied, and for at least 6 months wouldn't watch TV at all. TV was for "lazy" people. "Lazy" to ed means not only fat but worthless and stupid. Oh, this illness is bad. 

If you like, search some of my early posts, I'm sure I wrote about my d's academic perfecitonism and her slowly regaining the ability to relax and enjoy things like TV.

As a matter of fact, my d spent nearly this WHOLE weekend in her pajamas, watching Grey's Anatomy. And unlike most parents, I secretly CHEER her "laziness" YAY!! because it is NORMAL.

How we got to where we are (because we were where you are two years ago, everything you say sounds devastatingly familiar): 

FOOD -lots of it, frequently

TIME--our d very, very gradually got better. Like watching hair grow. 

EXPOSURE THERAPY--basically, that anxiety (about food, about grades, about relaxing, about social situations) can only be lessened by experiencing it. Face the fear, in other words. This can be done slowly, "laddering", or all at once. If you search for exposure therapy here you'll find lots of info. I used exposure therapy for TV, and for academic anxiety.

Tamar Chansky's book, Freeing Your Child from Anxiety, was SUPER useful.


pause--my d wants a snack!!

You're doing great! Keep feeding!

best wishes,
D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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momon
Welcome from another parent of a young onset child, mine fell ill just after her 10th birthday. She had a lot of OCD type thinking and severe perseverating on things It got super better after she had been re-fed and weight restored.  She did go on zoloft for a year that helped. She may go back on it after being off for a year and a half, to deal with anxiety, but the OCD traits don't seem to be returning. So renourishing may help with that, though it is slow. If not, it can be dealt with and your daughter will get better. You are on the right road, keep going!!!

And I know how distressing it is to see a young child so burdened. It 's hard but it will get better.
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Doitagain
Hi wewillpersevere. I'm posting as a mother whose D's mild OCD predates ED but got very significantly worse as ED (unknown to me)slowly progressed . Weirdly , By the time she was full on severely restricting , she said it was "better" .

I sometimes even apply "my own theory" that her ED may well have in some way "controlled" or even replaced her intrusive OCD thoughts at that early time. (Since then I've read Carrie Arnold's book - another OCD sufferer with ED). You are doing the right thing by trying to keep her occupied. When my D was almost WR her OCD seemed to "improve" (her words").

You sound like you are well on the way - keep doing what you are doing in terms of refeeding.

However I would consider getting her checked out by a psychiatrist who knows OCD/ED as I'd never ignore these kind of comments in a young person - I think this is important because there is always the possibility that a course of medication for this might be required.

It's seems that there is very often an element of OCD within ED but I do think it's important for us all to remember that it also exists as a standalone diagnosis and indeed for some people it might be that a dual diagnosis is appropriate. I'm no doctor, and this was just the case with our D, but ...maybe someone else can add to this?

I do think it is highly likely that food and WR will help greatly with the intrusive thoughts - our psychiatrist told my daughter the bad thoughts wouldn't significantly recede until a BMI of about 19ish (he was right) . Nonetheless, that doesn't mean for certain your D doesn't need some help in the meantime - we went down the medication route eventually CBT is good for OCD but it's hard to untangle which is OCD and which is ED and sometimes hearing from a doctor that the thoughts will recede is helpful for the young person. Keep going , it's a marathon, not a sprint but you are on the way and doing a great job x
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mamabear
Every once in awhile a post resonates and hits home because it sounds so similar to my daughter.
Your is one of them.
My child was diagnosed at 10. She was hospitalized for a month. Her decent was fast and furious (although she was probably slowly restricting and exercising more over the previous year). As she became more ill, the OCD stuff went bananas. She did not have OCD before she became ill through restriction and weight loss. She had a SEVERE exercise compulsion. She would hover over toilets, never ever sit down…took HOURS to get her to "sleep" because laying down was "lazy". She had rituals for everything. She had to touch heat vents with her big toe in a certain way when she walked by. She had to circle the car 4 times and jump in with both feet off of the ground to get in. She squatted int he seats of the car. She would not let her butt touch anything. It was absolutely, totally insanity. 

For my daughter, weight gain was key. Along with the weight gain (2 lbs a week was the aim minimum), we slept with her for over a year (to keep her from exercising). We ate lunch with her for the majority of 2.5 school years (because she would throw her lunch), we sat right outside of the shower and the toilet and took knobs off of doors. 

We stopped the exercise. She got 3 warnings. On the third warning she was given an ounce of ensure to replace the calories burned. It was hell on Earth but absolutely necessary. We did not even let her get the mail. She was not allowed to go upstairs unless it was with me for some specific reason. 

The hard news? It was hardcore. It took 100 percent dedication and a lot of work.

The good news? With weight gain ALL of the OCD and exercise compulsion disappeared for my daughter. ALL OF IT. I would say it took about 5 months and 25 pounds. She still asked to join cross country etc (no- never), but over time all of that went away too as the "voice" shut the hell up. It may not be the case for OCD with every kid, but a lot of people have had the experience that we did too of it all being ED related. Starvation does crazy things to the brain. 

My daughter is 15.5 now. She is in recovery. She is absolutely totally and completely normal and you would not know she was ever a severely mentally ill child. 

I have a very long thread that chronicles our journey. If you want- feel free to contact me. 
Keep hope alive. Have faith in the process. 

Persistent, consistent vigilance!
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wewillpersevere
My dears!!

Oh, you've all been so, so wonderful!! I'm so glad I took the time to sit and write...! 

OMG Psycho mom, your idea of needing bigger pants because we're stronger and more empowered than ever has been the best...!!

Thanks so much everybody for your support. Today was at the dr, she went up another kg!! still at 1.47 mt and now weighing 33.5!! I'm so so so relieved she's going up, but am really aware I have to try to continue putting on the weight fast... 

Thanks so much Irishup for the very thorough information. I'm only at 3000 and I swear that thinking above that TERRIFIES ME!!! I'm kinda hoping I'm a lucky one and she won't have to go too much further up in calories, although I immediately regret saying that 'cause I'm pretty sure I'm going to have to...

mdmama (I have no idea how to tag you guys in here!!), she doesn't have other siblings, so it's me 24/7 with her. I'm thinking about giving her Gravol or Benadryl (both recommended by the psychiatrist, since she told me no medication was worth it until she was weight restored) for her to get sleepy, since she's having a REALLY hard time sleeping (she'll try to stay awake as much as she can until my husband comes to bed). Anybody familiar with these?

We're in a very strange situation right now: I'm from Chile and we came to Canada (I'm Canadian) looking for the best treatment. My parents live here, and since things seem much more advanced here than in Chile, we took the leap. I'm glad we did, because I'm sure I wouldn't have found out about this forum otherwise. The thing is that my daughter is not going to school for the past two months, and we're sleeping together. We don't have much privacy now with my folks, but they've done a great job supporting us.

Thanks you so much everybody!! Hugs hugs hugs for everyone and happy for those who are in recovery. For those of us that are still in, WE WILL PERSEVERE!!!
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momon
Hi

I first must say that I too LOVED psychomom's idea of needing bigger pants because I am now so powerful. It makes me laugh when I would otherwise be sad about those pants.

But am also posting to say we saw severe sleep problems too early on in refeeding. I read on a ED doctor's blog that starvation screws up the sleep hormones. Wish I'd read it when it was happening to us as it is comforting to know that with restoration of brain chemistry sleep will get better. We tried benadryl, not helpful and made her hyper but I think it's worth trying.  We had bad luck trying melatonin, gave her nightmares and one night caused her to think the frogs that were making noises outside were telling her to run away in the dark, which she did for a bit. Very scary. I don't think hearing voices or delusions is typical for melatonin but it's not unheard of and it more often can cause bad dreams. We finally saw help from putting her on zoloft for a while. I hope just knowing that this should get better with brain restoration will be just one more spur to keep up the feeding!  you are doing great !
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mamabear
My daughter had a really horrible time falling asleep. She would arch her hips off of the mattress and engage all of her muscles etc. She would scream and cry and have panic attacks. It was brutal. One thing that really helped (and I was sleeping with her) was to do progressive relaxation and massage and heat packs. I am a doula and do progressive relaxation with clients. Starting with the eyes and face and head all of the way down to the toes with tightening and relaxing of muscle groups while talking very quietly and calmly. We would also talk about her favorite thing at that time which was design/fashion. We would "design" a gown in our heads and talk out loud about the details of it. 

I also wanted to tell you that we did tackle some of the OCD behaviors as well before weight restoration. As I said above, she would have to touch heat vents with her big toes a certain number of times etc every time she passed. I would put my body between her and the vent as we walked by and just calmly keep steering her away. I would keep my voice low and calm and say thing alike "this feeling will pass. nothing bad is going to happen. We are not going to give into the demands of this mean voice in your head. You can do this etc" . It was definitely hell but within a few times of getting through not doing a ritual, she would stop that ritual. We did not tackle every single thing because with food and weight things got MUCH better, but the really hardcore ones that were completely disrupting life- we did tackle. She would do a ritual going up and down stairs that would take forever. We got a kitten and put it up in my room. She could only see it if she went up the stairs normally. My husband held her torso and I moved her legs one at a time up the stairs. If she started to do her ritual we would start over. We did this for like 20 minutes at a crack a few times a day. Within about 3 or 4 days she asked if she  could just go up the stairs fast. I told her "yes, as long as one foot touches each stair and nothing else. No spinning around, going up 4 and back 2 etc." She cried and talked to herself for a long time at the bottom of the stairs and then she DID IT and NEVER did that stair ritual again. It was all quite strange. I guess we did our own form of exposure therapy (I live in the middle of nowhere and had no professional help). We also gave ensure for any unnecessary energy used. 
Persistent, consistent vigilance!
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YogurtParfait_US
Heya WWpersevere--yes, you will persevere and you will beat this. You've gotten such great advice from such great parents already, what can I add? I guess all I can say is to hang in there. Remember it isn't about you at all, or about your daughter, in terms of either of you having done anything wrong. By feeding, being consistent, standing firm, letting tantrums and hateful talk wash over you without taking it personally, all of this will help get your daughter better.

My daughter had trouble sleeping due to compulsive exercise--she would exercise in bed and would get out of bed and do headstands.

I slept with her for a while, with an arm and leg over her to keep her from exercising (she was 7 at the time). This helped loads. And parents of much older kids have also said that sleeping together was helpful. Our kids are scared. ED tells them they are worthless. Sleeping with them and being available for that sends the opposite message. And, it makes it much harder for ED to keep them moving.

OCD--my daughter has it, and had it before AN. I see AN as an expression of OCD, OCD grabbing onto food/eating/exercise as an area of obsession/compulsion. My daughter has had some great psychotherapy for the OCD (cognitive-behavior therapy (CBT), including exposure therapy), meds for the OCD (hefty dose of fluoxetine after she was well weight-restored), and ongoing twice-a month CBT, even though she's doing great. The ongoing therapy is to help nip things in the bud. We are 3 1/2 years out since I learned of the ED, and she has been weight restored for over 3 years. She's doing great, and eats independently but still needs some support. We added back a "watcher" at school, for example, because she suddenly decided to eat only vegetables and go on a diet. Um, NO WAY that was going to fly. So, she's back on track, but with some ups and downs.

Tamar Chansky's books have been very helpful, both the one on parenting anxious kids and the one on parenting kids with OCD.

Use this forum! It is a sanity life-line.

You and your husband can do this, and WONDERFUL that you are living with more family. The more of you with arms linked to provide the support (also known as SUPERVISION) needed for recovery, the better!

Sending warm support!
"Hope is a wonderful thing ... but hope by itself is not enough. Hope is the reason to take action, to make a plan and then to change the plan when it isn’t working - over and over and over again if necessary." Hannah Joseph (Let's Feast Friday Reflection, "Just Keep Going," Friday, March 3rd, 2015)
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wewillpersevere
Ahh... Such wisdom here. This forum is definitely a life saver!!

Thanks all for your advice; the lucky thing (or not...) is that my daughter's OCD is not so much around food anymore, but that's what makes it so hard to manage; it's her thoughts. For example, yesterday we were playing Jenga (my d and me), and I played a difficult move, and my mom said "oh, so sorry -D's name-, you're mom's too good". Yeah: BAD COMMENT RIGHT THERE!! My daughter had a meltdown right then and there. Poor thing, then she's like "I'm so sorry! I'm too sensitive", and of course I say "it's fine, we understand, don't worry, we love you". THIS IS THE CRAPPY PART OF LIVING WITH PEOPLE THAT DON'T EXACTLY HAVE THE HANG OF IT YET!!

BTW, is anyone Canadian and familiar with a good FBT? Where can I search for that here??

Love!! You're all so awesome.
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mamaclair
Hi Wewillpresreve,
I just emailed you a suggestion for a good Maudsley provider in Ottawa.
Keep fighting!
Mamaclair
My daughter, now 13, was diagnosed at age 12 around this time last year (2014). Hospitalized at Christmas 2014, then home without appropriate support for re feeding. Not fully weight restored and relapsed February 2015. Hospitalization then Residential at Walden for about 6 weeks followed by IOP (all6 hours from our rural home in NNY). Doing Maudsley now in stage 2 with guidance from Maudsley therapist in Ottawa, Ontario (1 hour north of us). Continuing to battle co morbid OCD and daughter resistant to taking any meds.
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