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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Tahirua27
Hello - I'd really welcome the experience of the group on understanding the challenges for my 13 year old daughter, MX. MX is a beautiful, creative, kind and sensitive person but has the challenges of having ADHD, learning difficulties, being transgender (we are all very comfortable with this in NZ- on puberty blockers), and having older sisters, one with ADHD/ gifted and the other with AN (has just come out of hospital).

MX has always been a picky eater and is a "skinny" build (her dad was the same as a child). She would always be happy to eat what we used to call "junk food" though and would happily eat hot chips and two minute noodles whenever offered, and would drive me crazy by sneaking packets of Oreos and Doritos into her room and ruining her appetite for dinner.

MX has been using Ritalin for her ADHD (one morning dose of 10mg) on and off for a few years. She stopped using it at Christmas 2017 as she felt it was supressing her mood too much - she liked being zany and fun with her friends - but asked to start taking it again in around July 2018 to help with her school work. We had always noticed that it interfered with her appetite significantly, but this time it co-incided with the food messages coming from her older sisters. Despite my vigorous protests, they would say things to her like "That junk food will catch up with you soon and you'll get fat", "You eat so unhealthily" or, when she asked them about some minor folds of skin on her tiny stomach, "that's fat".

With my attention diverted onto the middle sister's eating challenges, MX would tell me and babysitters that she just wasn't hungry, would eat only small amounts, come home with her lunchbox largely untouched, and eat very little at dinner. She even started to refuse old favourites like McDonalds and say that she was trying to be healthy now.

I took her in for assessment at the same psychologist where my middle daughter was being supported but was told she didn't meet the criteria for anorexia. Once my middle daughter was in hospital though, I had more mental space and realised that MX was very underweight. I have now obtained all the medical records and she has lost 6.5 kilos since August (now 35.3 kg) and is now around 80% of her ideal weight.

We are now doing home-based FBT with the middle daughter and working with MX under the same regime. Middle daughter regained her weight in hospitaland we are focused on maintaining but MX needs significant refeeeding which we are finding challenging outside of a hospital environment.

Generally though, MX is very compliant and tries hard to eat the quantities she needs. She is very quiet and exhibiting anxious symptoms like constant twisting of her hair. She tells me that she feels confused and worried (she often struggles with confusion with the ADHD - she prefers things to be stable and consistent). She has also said recently that she likes to organise things and that organising makes her feel really happy. She has never however said that she is scared of eating or refused to eat like her sister; she seems just to need a lot of structure and supervision to ensure she does eat and eats enough. At this point, we are continuing with the Ritalin (as when we stopped it she was stuck in constant melt-downs which were very upsetting for her as well as us), but just ignoring the lack of appetite and continuing with meals regardless.

I'd really appreciate your guidance on whether MX does have anorexia (early stage?) or has just become very underweight through the Ritalin and not enough insistence on eating regardless by us.

Thank you so much!





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AUSSIEedfamily
Dear Tahirua27,

Try the questionaire on the Feed Your Instinct website it is a website create by CEED in Victoria Australia

http://feedyourinstinct.com.au/.

It was put together with the assistance of carers/caregivers from this place and EDFA.

Do the checklist and print it out & give it to your medicos
ED Dad
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Tahirua27
Thank you! That was really helpful. The symptoms are different from middle daughter but they are still significant. Going to GP tomorrow.
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scaredmom
Continue to feed her and lots. She should not have lost weight she is a child. My d started the same way and needed everything to be perfect to control her anxiety.
Please get the assessment and feed. This is tough stuff!
XXX
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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tina72
We are no doctors here for sure but some things your d said point out to AN, for example to "eat healthy" and refuse McD. As AN is genetical and there is a risk with siblings I would think it might be an early stage and it is good that you try to treat it the same as middle d even if the professionals said she does not hit gthe criterias for AN (in what case? Is she just not "enough" underweight? I do not understand their thinking).

Also the "organising" thing made my bells ring, AN patients are often perfectionistic and have a drive for order and symmetry way before they develop any symptoms. Everything needs to follow crazy "rules"...
Keep feeding. There is light at the end of the tunnel.
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Mamaroo
Hi Tahirua

Here is a link to a recent, excellent article on atypical anorexia:

https://pursuit.unimelb.edu.au/articles/rethinking-how-we-see-anorexia

Here are some quotes:

"We worked with 171 adolescents over a period of nine years between 2005 and 2013"...... "We found around a third had ‘atypical anorexia nervosa’, where they met all the diagnostic criteria for anorexia nervosa apart from being severely underweight. "....... "These patients still experienced the same life threatening complications usually associated with anorexia, including a low pulse rate, low systolic blood pressure and low phosphate levels.But they didn’t present with the highly visible, severe emaciation that has long been considered the core diagnostic criterion for anorexia nervosa."

So it seems that weight loss and not being underweight causes anorexia, no matter how the weight loss occurred.

To help MX with eating, I would suggest having a mealplan and putting it on the fridge. The mealplan should show all the meals and snacks as well as the time she would be presented with them. Ans then stick with it. I had to get up at 6 am everyday for over a year to get breakfast into my d. I had to organise shopping and other activities around meal and snack times for months. The psychologist at the hospital told me that routine and structure lessen anxiety, which helped me understand why she craved it. I've attached a blank mealplan for you.docx meal plan blank.docx     
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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Tahirua27
Thank you all so much for these great leads and suggestions.
We have a wonderful GP and she have MX a diagnosis today of an eating disorder, without worrying too much at this stage about what it is.
We are used to meal plans and quantities thank goodness after having been in hospital supporting our older daughter with AN so at least we know what to do!
The challenge now is treating the two girls separately and feeding consecutively, doing two lots of appointments etc. We and the GP think it’s important not to just combine - they have very different issues.
I think MX will take an awful lot of refeeding as she is tiny and with a very high metabolism, but I am quite pleased at the amount of cream, butter, fatty chicken, avocado and mayonnaise I managed to get into lunch! I have never ever bought this sort of food before!!
Thank you all [wink]
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AUSSIEedfamily
Dear Tahirua27,


Please consider getting your GP to attend the New Zealand TBT-S event in Auckland on the 11th of February

https://www.trybooking.com/book/event?eid=437113&embed=1

This link describes the Temperments & Traits (TBT-S) based treatment https://www.edfaevents.com/about-1

Pleas consider viewing these couple of videos

https://www.edfaevents.com/blog/neurobiology-of-eating-disorders

https://www.edfaevents.com/blog/families-are-fundamental-to-adult-treatment

Warm and Kind Thoughts to you
ED Dad
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