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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So grateful to have found this forum.  I've been lurking for a couple of weeks and thought I should at least introduce myself.

My 14 1/2 year old daughter was diagnosed EDNOS at the beginning of this month.  She's been in therapy and on medication for anxiety, panic disorder and depression for a little over 18 months but we were not making much headway at all there.  Since she started high school this past fall, her mental health decline has been rapid.  We discovered she was self-harming (cutting) and so we moved her to a new therapy practice that specializes in DBT in early November, and with the help of that therapist, discovered that she's been restricting on and off for several months, and has lost weight.  She has always been small (3-5th percentile in weight historically) so even a slight reduction was alarming.

We are continuing to work with her DBT who has extensive experience working with adolescent eating disorders.  In the same practice, we are seeing an RD who is also trained in FBT (Maudsley) and the psychiatrist, so feel we are in a good place. In fact, the RD overseeing our FBT is the one who sent us here.  We are also putting in place a contingency plan for some higher level of care and the facility suggestions we've received from this practice have good reviews here, so I feel good about that.

So far the re-feeding at home has been going ok -- 3 lbs. of weight gain in about 3 weeks.  D. is fairly compliant with me, but anxiety and desire to self-harm are continuing to be an issue and I'm concerned about how things will go once school is back in session.  She has always had a tremendous amount of anxiety around school and has not been doing well academically, even though she is very bright.  We have some accommodations in place already, but are looking to ramp up her level of support at school in terms of academics.

We have already benefited from your kindness, wisdom and strength.  I hope to have words of support to offer others as we start what will no doubt be a long and difficult path.

Mom of 15 year old daughter, RAN diagnosed Nov., 2014.  WR June, 2014.
welcome to club that no one wants to join. Glad you have a good team already and d has ready started to gain. If you need anything let us know
Welcome to the forum.  I have found the support here to be instrumental in maintaining focus (and hope) during my D's continuing recovery.  Sounds as though you have detected ED early and quickly have assembled a quality treatment team to assist you (so important - took us many months to find doctors, therapists and RD's that really understand ED's and support FBT).  Wishing you support and successful recovery for your D....
Dad of daughter with ED
I'm glad you found this forum - it has been invaluable to me over the last 16 months.  3lbs in 3 weeks is great progress!  It sounds like you have a great team already there to support her.  Just be mentally prepared for ED thoughts to get worse for a bit when school starts up again.  This is what happened with my D (when we went from Summer to Fall) and we were prepared for it and handled it much better when we expected it to happen.  It's great that the therapist caught onto the ED behaviors early - I hope that addressing that will help with some of her anxiety/self harm/depression.   Good luck to you! You're doing all the right things!
D, 15, DX with AN 8/2013. Has been WR since 7/2014.
I share everyone's responses that you are doing great at getting a team in place.  Just another thought, but please let it go if it's not helpful to you--

My d fell ill with ED about 2 years ago now.  Her anxiety was strongly centered on school. She went to a public elementary school. She is very bright, a great student  and it was not clear why it was so bad socially for her at public school , but clearly it was. We switched her then next year to a small private school, a kind of alternative place with good academics but more individualistic nonconformist kids where treating each other kindly was absolutely required. That went SO much better for her. That school was on verge of financial failure and next school year we had to send her to a different private school. It is still clearly better for her than public middle school would be. We feel she needs to be out of public school, needs to be in a much smaller setting where less conformity is present. Not what I ever expected and not how we'd raised our other kids but it's what she needs. If she hadn't fallen so ill with ED we'd never have considered private school and the tuition hurts, but the ED clarified what was needed for her.   It might be worth considering whether a different school setting would help. 
Your daughter sounds much like mine - 14 years old, pre-existing serious school anxiety, good student who tries hard, accommodations in place but not helping much...  When my D started high school in September things declined rapidly.  She was on modified school from September (only 2 classes, home half the day) but the expectations and the large number of students were just too much for her.  She is currently home trying Home Instruction with a teacher from her school but even that is overwhelming her with anxiety.

Have you talked to your school about academic alternatives?  Our school board has several programs for anxiety and alt ed programs for mental health issues with varying levels of intervention.  DD will also be attending Day Hospital in the mental health unit at our local children's hospital in the next few weeks.  I agree with momon that traditional school is not a good fit for my D and she needs a smaller, kinder environment than a large, competitive public school.  A regular school is not the best alternative for every student.

Good for you for catching on to ED early and getting your D the help she needs.  Escalating anxiety with re-feeding is very common.  It is awful to go through, but very common.  Your D may need some time away from school if the combined anxiety about school and re-feeding is too much for her.  Sometimes societal and school expectations need to take a back seat to your D's health.

Thinking of you.

Colleen in Ontario

Single Mom to DD#1 (20), Autism Spectrum Disorder (diagnosed at 16 1/2), Generalized Anxiety Disorder, Social Anxiety, Panic Disorder
and DD#2 (17), In solid recovery from Restrictive AN, Managing Social Anxiety, Generalized Anxiety Disorder, Panic Disorder, ASD, finished with IP and FBT, successfully managing school and life

If, at the end of my days, I can say I saved the life of not only my child, but helped to save the life of someone else's child as well, then I have lived a good life.
Thanks all, for your kind words.

In response to the questions about school, we've offered her alternatives but she is adamant that she wants to stay where she is.  Because we're spending about $2K per month out of pocket on her various therapies and because I work full-time, we haven not pushed other alternatives yet, but that's certainly something we have on the table.

We are in the US (metropolitan Washington, DC area) and so although we live in a rather large city, we have very limited alternatives in the way of public schooling options.  At this point, we are pursuing an Individualized Education Plan (IEP) for her based on emotional disability.  This will, we understand, open up more options for us in terms of online schooling options, accommodations in the classroom, and potentially, workload.  Although she is quite smart and cares very deeply about her school success, she has been very unmotivated and generally unable to participate fully in school.  It's been difficult to watch happen, and has been an issue of discord between us.  I've completely backed off of the school pressure, obviously, since realizing the seriousness of her situation.

So, that's where we are.  If any other US parents have advice or suggestions on IEPs in this situation, I'd love to hear from you!
Mom of 15 year old daughter, RAN diagnosed Nov., 2014.  WR June, 2014.