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coffeeandcake

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Posts: 21
Reply with quote  #1 
Hi,
Its been a while since I posted, so a quick update on where we are.
D is 19, 20 in may.

For the previous year she has been under the care of REDS (New Zealand) as an outpatient, under their adult team.  This has meant little input from us.  We had a meeting with them at the end of last year and I realise now that over the summer we should have pushed hard to try and get her weight up - but to be honest I think that we have dropped the ball a bit due to the constant reminders from D that she is supposed to be in charge of her recovery. As you can imagine she has got nowhere in the last year.

D has invited me to go to her appointments with her (a positive step) and has agreed to a meal plan and more help from us.  She realises she is stuck, and doesn't want to stay there... as well as the ED telling her she does want to stay there... I am sure you will all be familiar with that!

Anyway, enough background rambling from me... now to the point of this post.

Tomorrow the appointment is with the Therapist, and I will be pushing hard for us to be doing more of the feeding - which is a tough one with her at the age that she is because they want her to be choosing to get well, and we all know that the undernourished brain can't often make good choices.  Nevertheless I shall "wear my big girl pants" (I love that phrase that I have read here before [biggrin]) and push hard.

The following week her appointment is a 1 hour appointment with the medical doctor, and so what my real question is, is what blood tests and other tests should I be asking for..... in case they don't suggest them?
I have spoken with the therapist about a bone density scan (dexa?) which she has not previously had done, so that will be on the list.

I'm sure lots of you have done all this so many times you could practically write the list from memory!

Thanks in advance for your help.

Coffeeandcake    
(hmmmm, might have to go find some right now!)

Foodsupport_AUS

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Reply with quote  #2 
All countries seem to have different protocols as to recommended blood tests and timings of them. To some degree it depends on her apparent nutritional state and intake. You can find some lists in the assessment guides in the learning center. In NZ I would suggest scrolling through current RANZCP guidelines  page 53 has the suggested tests for assessment. You may like to read the rest of the document to see what other info seems to be relevant to your D. 

Best of luck with the assessment. 

__________________
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.
tina72

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Posts: 1,534
Reply with quote  #3 
HI coffeeandcake,
(great name by the way)
Dexa scan is important and should be redone after 2 years. Correlating with that is Vitamin D in blood because many AN sufferers have low Vitamin D.
Heart tests should be done. Additional for that kalium and magnesium in the blood.
We did test also iron, zinc and Vitamin B 1,6 and 12 because zinc and Vitamin B12 cause depression and less appetite if missing. Everything was very low and we add it for 6 months now. Mood is improved a lot since then and brain is definitivly better working (I see it at least with school grades).
Does she have her periods?
Is she living with you or can she come home for some time x to help her with eating?
Tina72
coffeeandcake

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Posts: 21
Reply with quote  #4 
Thankyou both for your replies.

The RANZCP guidelines were really interesting - I haven't seen anything like that before so I have had a look through that and will write some things down to take to the meeting next week with the Dr.

The list of blood tests is very useful thanks Tina72, so I have added those to my list.

D has only had 2 periods - 1 before the ED started, and 1 light one a couple of years ago when we got her weight to a higher level, but a level that I now know wasn't high enough.

Fortunately she does still live at home, she is extraordinarily tight with money so she has no plans to move out at this point.  Interestingly, from some reading I have done, this extreme unwillingness to spend money seems to be fairly common thing with AN sufferers, however since it is keeping her at home we will not complain!

Thanks again

Coffeeandcake
 
AUSSIEedfamily

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Reply with quote  #5 
Dear coffeeandcake,

The MARSIPAN & NICE guidelines are also very useful.

http://www.rcpsych.ac.uk/usefulresources/publications/collegereports/cr/cr189.aspx

https://www.nice.org.uk/guidance/ng69

Also if you get any resistance from the clinicians you might like to consider down loading & printing out the Helping Minds document on the link below. Its a program being piloted here in Western Australia in several Mental Health facilities as a means of doing family/parent/carer engagement/collaboration/inclusion when consent is a barrier

https://helpingminds.org.au/wp-content/uploads/2016/12/A_Practical_Guide_for_working_with_people_with_a_mental_illness_February_2016_002.pdf

Here is some feedback from the Helping Minds team doing the piloting project.

XX XX and I are working with local mental health services to help them implement the standards within this guide.  Last year XX XX had great success with several inpatient mental health services, with all sites reporting increased carer engagement over the project period.  Consumers who were surveyed at one of the services also reported significant improvement in staff engagement with family and friends over the project period – very heartening!  Over the next few months we will be working with community mental health services, and we look forward to seeing what emerges with these services.

__________________
ED Dad
tina72

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Posts: 1,534
Reply with quote  #6 
"Fortunately she does still live at home, she is extraordinarily tight with money so she has no plans to move out at this point.  Interestingly, from some reading I have done, this extreme unwillingness to spend money seems to be fairly common thing with AN sufferers, however since it is keeping her at home we will not complain!"
That is right, my d is the same! I didn´t read this before. Where did you found that?

When she lives at home, that is great, you can do something NOW. If the therapist doesn´t support you, think about working out a contract with your d. Have a list what you offer her to do for her (pay for driving licence, buy a car, pay for college/university, help her find an appartment and pay for furniture, I am sure you will have some ideas) and what you ask her to do for it (eat 3 meals, 2-3 snacks, weekly blind weighings, see the GP every months etc.). Look for some short time leverage (a day trip to xy, a pair of new shoes...) and some long term ones.
If she is fond of money to keep, think about having a money box on the table and put in for example 5 dollars/pounds/euros for every day she has finished all meals (or 2-3 dollars for every meal). Does she have any hobbies?

The big problem with young adult AN sufferers is that they are adult on paper but much younger by heart. My d I think is about 14 inside (and is adult now on paper). AN takes to much years away. So the parents know that they have to treat them like a teenager and adult behaviour comes step by step later, but the "professionals" often don´t see this. In recovery they can learn to chose food and be independent and make good decisions, but in the hands of ED this is imposssible.

Tina72
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