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Playball40

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Reply with quote  #1 
Mamabear's post got me thinking.

We are 2.5 years in now and still aggressively chasing growth.  My daughter has lost interest in sports (soccer) and running, but not so much from the perspective of just not wanting to do it again, but rather she's such a perfectionist she knows that she's not the "best" anymore.  She simply wouldn't get out there again for fear of looking inadequate (she's admits this).  I'm ok with her not wanting to play sports but her justification concerns me.

Sadly, this seems to drive most of her decisions these days - won't raise her hand or volunteer information in school.  Won't try out for any new activities, won't reach out to make new friends - etc.  She hates school. Her grades are ok but she does the absolute minimum just to get by. 

Her weight gain has slowed again and I'm working from home over the summer now.  We might be able to get her back into an IOP program, but only if we can afford it.  It's not on our insurance and even with insurance a 4 week program is more than I have.

So, I'm left on my own and don't know how to help her.  Yes, I can 'feed' her but it's not doing anything really for her state of mind.  Or is she just being a sullen teenager (heavens knows I was at her age)?  She's 13 (14 in 3 months).  Her arms, legs and abdomen are scarred horribly from cutting - but no new cuts for a while now.  She's fascinated with skulls and taxidermy (more cleaning of bones) but it's more artistic than sinister.  She also LOVES musical theater right now (Falsettos and Dear Evan Hansen are her favorites right now).  She SAYS she's going to join drama/musical theater next school year - I really hope so.

She still has ED/restrictive thoughts but not as badly as they were - still enough to keep her from any real intuitive eating.  She will 'snack' with her brother and sister, but always very limited.  However, if me or Dad make her a dessert she will eat it all - She loves whipped cream on cinnamon apples.  She will say she doesn't want dessert but will eat it with vigor if you give it to her. 

I am worried her weight gain is just too slow - she's still underweight (for her).  5 ft / 100.3 lbs  Or am I being paranoid?  I just want her to be happy - My mother battled depression and alcoholism her whole life and it ultimately took her life.  My sister died in her 40's due to drugs/alcohol.  I'm terrified my baby is going to struggle to be happy her whole life and the thought paralyzes me at times.

Do we keep going as we've been?  Do we try to find her a therapist at this juncture?  I'm having such a hard time finding anyone that really specializes with adolescents that have an ED.  Or should I just look for someone that can help her with coping and self esteem?

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Caroline
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Reply with quote  #2 
Sorry your D seems to be struggling so much, and I can understand your worries about your D's future. 

I note your D seems to be on around the 50th centile WFH for age, so although you say she is not where you want her to be she is also unlikely to be a long way off. Her slowing gain, may be because she is getting close to where she needs to be or it may be due to feeding or her managing to avoid eating. You probably know the answer to this. 

We can't tell you what to do, but seeing that she has pervasive mood issues, with a strong family history of psychiatric issues, professional help seems to to be a reasonable approach. For me I would not be so worried about ED specialisation but rather that they understand FBT treatment of ED and don't make things worse.  

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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
sk8r31

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Reply with quote  #3 
Sorry that you have had a bump in the road, & are feeling stalled.

I wonder if there might be any teen or family DBT classes in your area?  Psycho Mom had a good experience doing classes with her d.  The course was not focussed on EDs, but on behaviors.  Possibly it might help with perfectionism etc.

This may also be an easier time to find a good T.  I know that when we were searching for a new 'team' we were able to get started in the summer with 2 good therapists who typically had a waiting list during the year, but with clients taking summer vacation time etc, we were able to get started quickly.

Summertime can also be the perfect time to 'dip a toe' into new activities.  If your d likes musical theater, perhaps there might be a summer class or program where she could try that out.  Socially it may help as well...meeting new people who share similar interests.

When our d was 15 & struggling, we had her do some activities that she indicated she was interested in....just nothing that was active.  For her, it was photography & driver's ed.

You are right to think about shaking things up if you feel your d is stuck or stalled.  It's great that you will have more time in the summer to be present for meals & snacks & able to provide that back up for your girl.

Sending strength & support,
sk8r31

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It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
toothfairy

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Reply with quote  #4 
Hi Playball,
Good to hear from you.
My story is that at bmi 19 where your D is, my S was not great either. As I got him over the whole "minimum healthy weight ", the state improved really rapidly the higher I went up to about bmi 25. He is fully functional now.I would certainly try that first, put butter,cream etc in her food.

Other than that, would you have any way of getting to the UCSD 1 week family intensive in San Diego, that seems like a brilliant programme.

PS in case you have not seen this 

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
bryony_1234

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Reply with quote  #5 
You love that State Not Weight video toothfairy! [wink]
toothfairy

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Reply with quote  #6 
Yes bryony,
I sure do.
It is one of my many favourites.
The thing about this one , is that it is so easy to pass on to an ignorant clinician that thinks Recovery for anorexia is a bmi of 19.

It makes my blood boil that so many sufferers are in limbo land - part recovery, living a half life due to misinformation.

The more people that see this, the better IMHO.

I love this on the subject too!

http://tabithafarrar.com/2017/04/trouble-target-weights-anorexia-recovery-living-paycheck-paycheck/

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
scaredmom

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Reply with quote  #7 
Hi Toothfairy,
I show many people and those on my d's team, this video from my phone. It is hard to explain "state vs weight" to my friends so this is helpful. So thanks for posting this and the link to more good resources!
I had to show my h too at the beginning because he said "she looks good" and "I could not eat that much". Helped to get him on board.
What other good videos can you share?
XXOO
toothfairy

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Reply with quote  #8 
Hi scaredmom,
Thanks so much! That is my aim, my mission and my agenda, to get as much of the helpful evidence based information out there as I can.
I hope to be able to educate other people as other wise people did for me....

I will start a thread over the next few days,of my very favourites...

In the meantime - but there are some on the you tube channel on this site here.
https://www.youtube.com/user/FEASTvideopage
Best wishes, and hope things are still improving,
TF

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
Torie

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Reply with quote  #9 
Quote:
Originally Posted by toothfairy
My story is that at bmi 19 where your D is, my S was not great either. As I got him over the whole "minimum healthy weight ", the state improved really rapidly the higher I went up to about bmi 25. He is fully functional now.I would certainly try that first, put butter,cream etc in her food.


Same story here.  My d needed to be at a higher weight than anyone expected, but once she got there, things really improved.  My formerly depressed, cutting, suicidal d is doing great and will be going off to college in a few months.  I know that wouldn't have happened without the good advice I received here to

keep feeding.

Hugs. xx

-Torie

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

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Reply with quote  #10 
as you consider increasing her food intake you might see if there is a musical theatre camp over the summer she could attend?
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Son diagnosed @ 12.5 yrs old with Severe RAN 2/11. Co-morbids - anxiety, Active restriction for 3 months. He stopped eating completely 2x. He needed immediate, aggressive treatment from a provider who specialized in eating disorders, adolescents and males. We got that at Kartini Clinic. WR since 5/11. 2017 getting ready to graduate slipping lost 8lbs. Fighting our way back.
Playball40

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Reply with quote  #11 
I completely agree that her current weight is not right and that 19 BMI is too low for her.  We're still re-feeding hard but seem to be where we need to add even more calories.  I had really hoped at this point the 'hypermetabolism' would have slowed some. 

Where I'm having trouble, I think, is finding her care/therapy that would work for her in conjunction with the feeding at home.  I believe her old therapist actually got 'angry' that we stopped seeing him.  And the others just don't seem to be versed in FBT at ALL. 

She attends a performing arts school so she's already signed up for musical theater.  She had been in the art and stagecraft program previously, but, she seems to not care for prompts and deadlines with respect to her art.  She loves art so I don't want to make it a chore for her.

Honestly, I'm not sure at all that it's HER that has stalled.  I think it's me.  I'm looking for a way to pass the baton I think as I'm so burnt out on meal planning, snacks, schedules.....etc.  And I feel horribly guilty about it.  I see her eat a mouthful of cookie dough and attempt to convince myself we're almost there....but we're really not. 

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Caroline
mjkz

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Reply with quote  #12 
Quote:
Honestly, I'm not sure at all that it's HER that has stalled.  I think it's me.


Why would you spend all that money putting her in a hospital program if you are the one who needs help?  Why not instead look for something to support you?  Do you have family that could take her for a day or a weekend?  You could preplan meals and send food with her.  Do you have a therapist?  Maybe you need the support and seeing a therapist yourself could help.  Is there any way to send her to a day camp? That way you could have time to yourself and make sure she is still getting what she needs.  What about taking a class either by yourself or with her?  You say she loves art.  My daughter and I did a mosaic class together.  She was not happy about it but I needed something for me and we both ended up loving it.  What about sending her and a friend out to do something like see a movie?  I used to do that with my daughter and I'd pick something else to see at the same time.  What about just adding several shakes to what you are already doing to get more weight on faster?  I found that as my daughter got closer to a good weight, I could start buying prepackaged things and just adding things with extra calories to the prepacked dinner.  There are some great muffin recipes on here that can add over 1000 calories in just one muffin.

I can come up with a million ideas for you but as you are the one needing the support, I'd save the money and use it for your own therapist, get away-whatever you need.
toothfairy

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Reply with quote  #13 
Hi Playball,
Would it help you to re-frame?
Mjkz is right, you need support. You need help to help your D. Or is there a
Local ED carer support group near?

What area of USA are you in? Maybe somebody will have a good lead for a T for you or for DBT.
Even if she goes to a 4 week programme, she will not be " cured" & will likely need the same amount of support & supervision that she needs now afterwards.
This illness takes so long to deal with ...years normally.
But one thing we do know, is that without weight restoration, true & proper weight restoration, there can be no recovery,
So you know what needs to be done, would you like us to brainstorm how to help you do it?
The restrictive thoughts are typical or a sufferer at her stage.
Even when our kids are fully WR - they still need a lot of support to get them to adulthood.
This is a marathon & not a sprint. But the quicker you get her to proper WR - the easier it will be - BY FAR.....
Re intuitive eating, that can take years to come back, and sometimes does not return.
Best wishes

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
toothfairy

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Reply with quote  #14 
Playball, how are you doing?
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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
HateEDwithApassion

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Reply with quote  #15 
I third and fourth DBT therapy. I went through it with my D and while it hasn't solved all of her issues, it has made a difference - and she barely engaged with it. Imagine when you have a child who does. It's practical and it also supports you in your responses to your child. I think it's a life-saver for anyone who learns it and I use it in many part of my life. It's not easy for the suffered because it's relearning everything about responding to emotion, but when done according to the Linehan model, really effective.



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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
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