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

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sandie
Hi I need to get my head straight about an appointment we had yesterday with psychiatrist to increase ssri and d's psychologist.
Sitting and standing bp and pr were done for the first time in 8 months and psychiatrist was concerned about 18 beat difference in pr (68/85) and said no exercise for a few weeks and talked about heart muscles being weak still and risk of heart attack, arrhythmia and death. The paediatrician (same team) did not check these vitals before more or less discharging her 2 months ago and telling her she could go back to pe. She has gone running and swimming since and I am concerned that she could have been at risk of a cardiac incident. I stopped rigorous exercise anyway a few weeks ago due to weight loss.

She has lost weight again 400 g in a couple of weeks. we were expecting this with camp (which really helped her mental health). She is now bmi 17,5 -- down about 800g from her highest (bmi 17.9) about a month ago. They just told her to stick to her same "diet" yesterday but make sure the meals were regular. I questioned this in light of weight loss but psychologist reckoned she has probably maintained or gained since coming home from camp and told her she just needs to gain a tiny bit next week.

No-one mentioned need to ensure properly hydrated. I have searched on this forum since yesterday and seen some old posts  I think from food support mentioning the importance of hydration for orthostasis. I actually mentioned yesterday at meeting that she does not drink much and they did not pick up on this

I feel angry and worried and not sure that I am getting good advice and support from her team and guilty that I did not make sure they checked her sitting/standing vitals at previous visit.  I don't know who to turn to to make sure I am getting sound medical advice for my D,
I drafted a contract last week based on a template from UCSD and I had sent it to the psychologist for her comments as I am trying to make sure we are on same page to support my D. It states really clearly about parents increasing nutrition if there is weight loss and also states the amount of weight gain expected. I have had no comments back and no supportive comments at the meeting yesterday in line with what I want to do.

I am scared about the heart but i don't know if I can trust the psychiatrist around my D's physical health. I think she needs hydration. I think she needs more weight -  why won't they support me on this?
IN th meantime I now have a really upset child who is threatening never to eat again as I won't take her on holidays today (mainly because of her unpredictable low mood/agitation). Hopefully that is just empty threats.       
  
  
  
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sandie
The same old thread on this forum had some posts from people talking about ensure being added with orthostatis- a boost protocol. I would like to find more information about this as wondering if I can convince my D to add a daily ensure as well as current meal plan.anyone know anything about thois protocol
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scaredmom
I am sorry for the current upset! Here are my thoughts. Yes she needs proper hydration and you can do that with any fluids and preferably with something caloric- still counts as water. 
Also more weight no matter how you do it. 
I wonder how you feel about sitting down with them alone and having a heart to heart with the team? That is usually how I work things
through with the team. I recall you have significant medical knowledge and I think speaking to whomever is responsible for her physical health would be best. Are you able to do her vitals at home regularly? 
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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scaredmom
I wanted to also add to document everything  in writing whatever you discuss and what is happening to your d at every visit. I use that and the plans made at visits to come back to when the team starts going off a bit. From a medicolegal perspective if it is in writing it makes it harder for them to back pedal. And it give you significant power, not sure if that is the best word, when it comes to planning her care. 
I think if you have questions write them down have them answer all properly, document and then give them a copy. That way it is part of her legal chart. 
Sending a hug!
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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scaredmom
Heavens! As soon as I put my phone down I think about something else! 😊
I also go into appointments armed with evidence and data. I have shown them the admission criteria and discussed with them, I have quoted world renown ED experts on weight targets etc and state not weight. I refer them to look at the internet! The team needs to view you as the expert in ED that you are. You are part of the team , they need to include you every step of the way with everything! All decisions should be ones that YOU agree to and understand why and how they made their decisions. 
I hope some of this is helpful.
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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Foodsupport_AUS
I am so sorry that once again your team has let you down. That increase in heart rate is significant and the psychiatrist does have it right that it suggests her heart is having to work hard with postural changes. Theoretically of course is should be the paediatrician in the team who is monitoring this, but it sounds like they dropped the ball a while back. They should also be working with you to continue to increase her weight. I can't quite recall how old your D is but unless she is very young she is likely to be well underweight with a BMI of 17.5 and even worse she has lost weight she could not afford to lose. 

I agree with scaredmom that documenting everything and then trying to discuss with them alone what support you think you need could be helpful if you can manage that. I also note in May that she didn't have her period back yet, has it come back regularly yet? Another sign that she is likely to need significantly more weight. 
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.
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sandie
Thanks both. She is 15. Her periods have come back regularly. I agree i need a review mtg again without D present. Unfortunately holiday time here for professionals so will be a few weeks. The person responsible for physical health is the paediatrician but i am not satisfied with her care so i need to think about whom i need to speak with. Yes need to document, write down all questions, confidently cite evidence, insist i am satisfied with all decisions. Hydrate and get weight on. Thanks.
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tina72
Can you change paediatrician or take her to your own GP and take all documents with you (and the guidelines from AED) and ask him to check her vitals as requested regularly?
I see it so often that so called professionals do not what she should do and get the kids into life threatening situations with that because they do not take that disease serious.

" I think she needs hydration. I think she needs more weight -  why won't they support me on this? "
You are completely right with that and you know what is needed and your gut instinct tells you the correct things.
Ask them to do that and support you or change the team. There is always a plan B.
If they do not support you they are worthless.
Keep feeding. There is light at the end of the tunnel.
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workingthrough
How much was she typically gaining each week prior to this? Our team pushed for three pounds a week once we were in a good routine. In the beginning, we were only getting two. S had three Ensure/Boost Plus in addition to full meals, snack, and dessert. The Ensure’s were served with snacks and dessert; once his weight was in a better place + fear foods, we removed the drinks - although he still has a large smoothie every morning (almost a year later at this point). His calorie needs are still very high. 

Only sharing that as an idea to get more weight on. Sure thinking of you! 
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Kali

Dear Sandie,

I'm sorry your daughter's team is letting you down. It is important that she be medically monitored and that you raise your voice with your concerns and speak with them in private. Of course she needs to gain more weight. So my suggestion is to see if you can find any way we can help you bump up the
intake at home. I know this is easier said than done though and you wish you had more support from your team really putting their feet down and insisting on weight gain. I agree with the others that careful documentation about what is happening at the meetings is important. 

We used ensure/boost to supplement and I also used benecalorie when I was desperately trying to get weight on my daughter. The benecalorie can be mixed in with all sorts of sauces, rice, soups, spaghetti sauce without any taste and adds 350 calories in a relatively small footprint. How are you preparing her meals now at home? What opportunities can you find for higher calorie meals? I also found that it was better not to talk about weight gain at all during that period of time but just to serve meals.

When my d. was in residential the ensure was part of the daily regimen. They had 3 meals a day plus 2 ensures, at snack time with their snacks. So for example if you did some benecalorie and and one ensure/boost every day that could supplement with an additional 700 calories on like that to the meals she is already eating. Or try beefing up a smoothie with heavy cream and also adding fruit so it has the appearance of being something healthy for breakfast. When my d. complained that she hated the ensures I gave her a choice between chocolate milk and the ensure. 

Thinking of you...hoping for the best for your daughter.

Kali

Food=Love
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sandie
Thank you all. My D put on 11.5 kg in last 8/9 months at home- a bumpy ride, slow to start, very difficult to settle into routine. Magic plate never worked. LSUYE has worked during school-time but not so much now during summer esp as mood so low and she needs more and not less life.
With advice of forum I managed to bump up calories some months ago (but unfortunately no smoothies, no Ensure) which got her to where she is now. I think a critical problem for us is that paediatrician told her early June on basis of return of period, she did not need to put on more weight so any weight she gained since then she has lost and a bit more. I have considered going it alone without team as I am finding it hard to get the support I need despite regular communication, individual review mtg/conversations without D present. However, my current conclusion is I need them as my D only put on weight when they expected it, so I NEED to get them to support me. My hope was and still is that I can get them to support the contract I drafted. and I need their support to address pre ED anxiety. I cannot complain about the time they spend on us and they have done a couple of home visits when D refused to attend. They are just coming from a different perspective- focussing on her emotional state, and very little time since the beginning has been on food/the meal-plan.  

Psychologist is keen that D takes more responsibility for eating and has not supported any effort I make to retain control. Currently I control dinner and little else, although D largely having 3 meals and 3 snacks. Obviously I have some control with respect to what food I buy and to some extent by repeatedly giving messages to my D, she may not do what I ask at the time but the next day (eg add more to a snack).

She is doing ok in one way; she has come a really long way. She does not want to lose weight although she does not want to gain it either. She is eating much greater variety of food. She needs more calories than she realises. She got a fright with the message about her heart and I think I can use that and the fact that she wants an active life to motivate her. She was a bit calmer last night and we think we are already seeing the benefit of the increased ssri and seems to be prepared to discuss how to regain weight lost. 
so I have work to do with both D and the team. thanks for all your responses        
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tina72
sandie wrote:
I think a critical problem for us is that paediatrician told her early June on basis of return of period, she did not need to put on more weight so any weight she gained since then she has lost and a bit more. I have considered going it alone without team as I am finding it hard to get the support I need despite regular communication, individual review mtg/conversations without D present. However, my current conclusion is I need them as my D only put on weight when they expected it, so I NEED to get them to support me.


This is one of the most common mistakes and I think you should talk about this with the team without your d around. It is totally idiotic to say to a 15 year old when her periods return she does not need to gain more weight.
1) returning of periods says nothing: they told my d the same here in IP and her periods returned on a BMI of still 5-6 kg underweight and guess who had the trouble with that? It is not evidence based, not realistic and not healthy at all to set such a stupid target!
2) A 15 year old is NEVER WR and needs to gain until her mid 20s and the team SHOULD KNOW that and should not tell your d that she is WR and does not need to gain more at age 15!!!
You need to adress that. If you need the team to tell her that she needs to eat more than they must do that and not destroy your good work.

sandie wrote:
Psychologist is keen that D takes more responsibility for eating and has not supported any effort I make to retain control. Currently I control dinner and little else, although D largely having 3 meals and 3 snacks. Obviously I have some control with respect to what food I buy and to some extent by repeatedly giving messages to my D, she may not do what I ask at the time but the next day (eg add more to a snack).


Giving back responisbility for meals is a really long process and at age 15 you have NO NEED to hurry with that. It was a long dance here for about a year until my d managed to know what she needs to eat and maintain her weight (and she is grown out) without my addings. Giving back control too early is second most common mistake I saw here and in real life with ED.

sandie wrote:
She is doing ok in one way; she has come a really long way. She does not want to lose weight although she does not want to gain it either. She is eating much greater variety of food. She needs more calories than she realises.


She must learn how many calories / what amount of food she needs to eat and that is a long process and at age 15 this will change a few times until she is grown out. Her metabolism must handle a growth spurt and developing a female body and stress with school and social stress with boyfriend etc. It is very likely that she will need more calories and gain more in the next years. It is great that she understands that she cannot lose weight but she needs to learn that she must gain more in the next years until she is grown out. Not wanting to gain more is still an AN behaviour.

I am really angry that your team seems not to help you with that. Please talk to them directly about what you need them to say to her.
Keep feeding. There is light at the end of the tunnel.
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