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

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Stanley01
Our daughter suffered from anorexia nervosa about 8 years ago while in 4th/5th grade.  It presented typically with the desire to lose weight and have body distortions, etc.  The ED has truly been in the rear view mirror since then (8 years) but there has been anxiety and a little OCD along the way (not unmanageable or interfering with life).  After one semester in college away from home, she had difficulty eating independently there and came home for winter break with OCD rituals that impacted all aspects of life (getting dressed, leaving the house, driving, engagement in activities, as well as eating).  Has anyone seen this before where the OCD seems to be in the drivers seat and the impact on eating is NOT accompanied by body distortions, focus on getting thin, etc.?  We think she needs an OCD program but also the eating must be addressed as she is really not eating independently still.  Recommendations? Is there a reputable dual diagnosis (OCD/ED) program out there?  Also, she is 19, so we have the added challenge of needing her to buy in....  Thoughts, insights and suggestions would be appreciated greatly!!!!!!!
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debra18
Was there any weight loss while she was away?
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Stanley01
Yes, sorry I forgot to mention that. About 10 pounds 
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Scaredmom2019
Roger's Hospital has intensive OCD/ED programs. PHP, inpatient etc. I believe they have several locations around the US. I cannot speak on the quality of the programs as we have never been in their programs but we have been considering it.
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ValentinaGermania
My d had some OCD before ED moved in but it was way worse with ED in the bad days. It concerned times of eating, sitting exactly on same place, using only this dish, wear only that clothes, and I can add a lot to a very long list.
OCD is a very common symptom with malnutrition. It got better with every kg she gained and is now back to a level that is way better than ever before in her life because we started to tackle it like fear food when our fear food list was worked down.

RE age 19 and need to buy in: does she want to go back to college? Then have a contract with her that you will pay for that when she is recovered. You are not without power as long as they are financially dependen...
Keep feeding. There is light at the end of the tunnel.
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Torie
Your post makes me think of YogurtParfait.  

Our ED-kids all seem to exhibit OCD behaviors while ill, but her (very young) d seemed to have a lot of OCD as a separate issue.  I think she said in her d's case, the AN seemed to be one more manifestation of the OCD. You might want to look up her old posts or send her a message.  She doesn't hang around here any more but does post very occasionally.

Best xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Torie
P.S. If you write to her, please tell her I said hi.

Thanks.

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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MKR
Hi @Stanley01,

The OCD seems to take over when the child is overwhelmed. I personally know students who, while they didn't have eating issues, did develop strong OCD rituals when left to cope with new environment all on their own (this was way back in my student days). They required direction and boundaries, someone to help them refocus on work. 

I agree with Torie that the ED might be a manifestation of OCD in some cases. Perhaps they go hand in hand.
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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debra18
I would focus on the nutrition and weight restoration and see if ocd behaviors improve. My daughter had many ocd behaviors that went away with more food and weight gain. Maybe ED came back while away at college.
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Stanley01
Thank you all for your responses.  I really appreciate them and would welcome any others! 
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Enn

welcome,@Stanley01
I do hope you find the support and information you need.


My d had OCD tendencies in kindergarten. Hand washing etc. We worked on that. The a few years later ED came and she had some other OCD tendencies. She kept her room perfect. No one could sit on her bed or mess anything up or move anything. The OCD has a strong positive correlation with AN genetically. ( the GWAS study published in July 2019, is the reference).

So they do go together. We found the OCD got better with food and time. Your d has lost weight , so that would be my priority.
I think if she could see a good ED team they would fully understand what was going on. Does she have a team? 

 

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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Enn
https://www.discovermagazine.com/health/a-large-genetic-study-of-anorexia-may-begin-yielding-clues-to-treatment
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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Stanley01
We revisited the ED team but my daughter insists this is OCD not ED, that she does not have the same desire to restrict/lose weight as she did 8 years ago and all is just a function of OCD.  I am not so sure about that.  I  think both are present even if not driven by the ED.  However, at this point, she  is much more willing to work with the OCD therapist so I am trying to keep that line of communication open while I develop other options that can address both problems.  
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atdt31_US
I have struggled with whether to post this, because I fear I am seeing this everywhere.  But here goes anyway ... you can watch an hour long video and decide if you should further consider whether your young child, in fourth or fifth grade, could have had an undiagnosed reaction to strep that may have started her OCD and eating restriction and is now flaring in the form of OCD/anxiety.  I know you are new on this board. I know the regulars are likely getting tired of me posting about this ... but like the other threads I've posted in, the scenario you describe could fit … and there is treatment if in fact it is this possibility.

IF you think your kid had strep close in time to the initial eating restriction and OCD symptoms, and if your child still has her tonsils, now, in college, it is possible that she had a flare of an autoimmune encephalitis that resolved (remission of the ED and it sounds like waxing and waning OCD in the meantime) and now, with exposure to illness at college, is having a flare that is declaring itself with more significant OCD.  

The condition is searchable by many names:  PANDAS; PANS; CANS; PITANS; CPAE; Autoimmune Encephalitis of the Basal Ganglia -- they are actually still trying to figure out what to call it.  You will find the most searching for Pans/Pandas (P/P)... but in order to cut the learning curve the best way I know how, watch this clip of Dr. Kovacevic (link below), a pediatrician and now top tier PANDAS doctor who has worked with and followed these kids for twenty years.  In the first ten minutes of the video he discusses some case studies, which include kids presenting with eating restriction and OCD.  At about 44 minutes he talks about older people (20s to 60s) who will have anxiety, OCD, panic type presentation of Strep if they had PANDAS as a child, often without the normal strep symptoms.  
 
Obviously not every kid with an eating disorder has P/P.  BUT, 17% or more of the kids with PANDAS present with an eating disorder (and OCD). There is certainly overlap.  If you throw in the very young age of your child when eating restriction began, as well as OCD, it might be worth considering this as a potential.  Experts now believe about one in 200 kids have PANDAS, the majority of whom go undiagnosed.  

If you think this is a possibility, you could get your d swabbed for Strep, with or without symptoms, especially if she has had her tonsils removed (strep can also hide in sinuses and even on the skin in the form of a perianal rash or even along the toenail -- and without tonsils the throat will seldom hurt even if strep is positive).  If negative for strep, or if your doctor won’t swab without normal symptoms, you could ask for diagnostic antibiotics (I am not shy of antibiotics).  Or, if antibiotics with a negative strep test is not an option, and you clear it with her doctor, put her on ibuprofen 24/7 at label doses for a week or two and see if the OCD wanes.  If it does, it is inflammation based in her brain and PANDAS type treatment may help -- it would be part of the picture you could take to a P/P literate doctor.

Here is the link to the doctor’s presentation, which was made to other clinicians and PANDAS parents, in October 2019.  If you want more stuff on P/P I have a ton — but won’t clutter your thread unless requested. 


http://pandasnetwork.org/2019-conference-videos/
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.
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Torie
atdt31_US wrote:
I know the regulars are likely getting tired of me posting about this ... 

Nope, post away!  This is a really nice intro to the topic.  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Torie
I think maybe you meant to post a different link, ATDT? xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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atdt31_US
Torie wrote:
I think maybe you meant to post a different link, ATDT? xx

-Torie


Thank you. Unfortunately, I don't know how to make the link more user-friendly.  This conference series is not (yet) on Youtube and apparently when I copy the url on Dr. Kovacevic's video it still takes you to the main page for the October 2019 conference, which is on the Pandas Network website as they hosted the conference.  Sorry for the confusion and extra step ... click on the link and then below the big part with video, which I think comes up with the introduction to the conference, there is a line of smaller rectangles .. each of those is its own clip ... look for the one with the name Miroslav Kovacevic and click on it and you can watch his clip without watching all the other doctors (and a few parents).

If you want to watch more, Latimer is very good -- neurologist, who talks a bit about how OCD can be in the form of intrusive thoughts and not outwardly visible ... also I think it is her that talks about how a lot of the PANDAS kids with EDs restrict eating due to fears relating to contamination or similar fears that are not related to weight gain (although more traditional RAN presentation can also occur with PANDAS, as can binge).  Kovacevic is the one I like the best because he gets right to it, and if you watch, he gives an almost mathematical formula to see if your kid is likely PANDAS ... and a lot of kids are not diagnosed until many mini flares show up in various ways and suddenly something is "off" enough that the picture becomes clear.  

Again, if this looks like something any of you want more info on, I have read all I can get my hands on for coming up on a year.  I am fully satisfied it is a real thing ... saw it first hand, and also saw it recede with treatment.  Fair warning, however the RAN part of PANDAS often still needs traditional refeeding, so don't think a few ibuprofen will necessarily take care of all the issues ... but if inflammation is at the root of the ED trigger, that must be dealt with.
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.
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ValentinaGermania
Stanley01 wrote:
We revisited the ED team but my daughter insists this is OCD not ED, that she does not have the same desire to restrict/lose weight as she did 8 years ago and all is just a function of OCD.  I am not so sure about that.  I  think both are present even if not driven by the ED.  However, at this point, she  is much more willing to work with the OCD therapist so I am trying to keep that line of communication open while I develop other options that can address both problems.  


The important thing is that the OCD therapy does not mean to stop refeeding and gaining weight. This must be top of the list.
It is possible that she uses the OCD as "excuse" that she does not have an ED. Anosognosia...
Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
OCD presenting as restricted eating is definitely a thing, but the two can go together. Weight loss can induce OCD type thinking. So chicken or egg is hard to work out. The upshot of it is your D needs regular nutrition and to regain the lost weight, refusing to do so/ resistance suggests there is a body image issue. Hopefully you can find some support for both these things at the same time, but just looking at the OCD without weight restoration is I suspect unlikely to be helpful. 
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 agree with FoodSupport: In order to get well again, she needs to regain the weight she has lost.  There is a chance that regaining that weight (and keeping it on) will resolve the OCD features.  Addressing the OCD without weight restoration is unlikely to resolve enough of the problem.  I realize that you are trying to find someone to help with both aspects (OCD + ED), but it may take some time to find professional help who are competent at both.  (Hard enough to find help that is actually helpful for either one.)

In your shoes, I would try to tackle the eating immediately.  As you know, losing more weight will make it much, much harder to get her back to a proper weight for her so it is really important to address that without delay.

Is she financially dependent on you in any way? If so, that can provide the needed leverage to require full nutrition. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Stanley01
I agree with the goal of weight restoration!  Actively working on that.  For those who have used financial leverage to persuade a young "adult" to agree to more intensive treatment, how have you done that?  Many thanks in advance!!!
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MKR

Financial leverage:

Up until my D got part-time jobs:
- I have been paying for her cellphone plan.
- I own the wi-fi at home.
- I pay for the cost of transport.
- I pay for the extracurricular activities. 
- I pay for birthday celebration with friends. 
- We saved for a new bike but that had to be temporarily dismantled as she was using it too often or in a "harder" gear (= more workout)
- I offered to pay for the driving lessons.
- I  offered to buy her a car.
- I will be paying for any overseas travel (if and when. Not quite ready yet)

All of these she is keen to have me pay. She could easily afford one if she chose but not more than one.

The key is: something the child really likes.

P.S. I also pay the bills, school fees, groceries but that should never be the child's responsibility in any case.
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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Torie
We were very clear with our d that we look forward to paying for university, but we can only pay for her to go away to university if she has demonstrated that she can keep her weight up.  I realize that not everyone wants to / is able to do that, stbut it was hugely motivating for our d.  

We were serious that we would not pay to send her off to university underweight, and she knew we were serious about that.  Even though she had been well and truly weight restored for more than two years, we required her to apply to a local university in case she was not well enough to live away from home.

What we should have done (and many others here have done) is to spell out what the plan is for weight loss.  Green zone = all okay.  Yellow zone = z amount of time to get back into green zone; mom will join at university on weekends to eat meals with d.  Red zone = mom moves to the university town to eat meals with d or d returns home. That type of thing.

Whatever you normally fund has potential as leverage: phone, tuition, transportation, etc.  As MKR said, I would never put food on that list.

Many here create an actual contract that is signed by both kid and parents.  A number of them have been posted on other threads; if you would like to see an actual contract, I'm sure people will send you a copy of theirs.  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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MKR
Thank you @Torie, I completely forgot about the Uni fees! 

It will be the next stage. Although there is a fund set aside, university costs much more than just tuition fees. And living at home will be a condition, of course. 
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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