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

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Alethea Show full post »
Sotired
Is it possible for you to stay somewhere close for a week and bring suffice t food in so that the hospital staff can see what you mean?here its standard practice for parents to stay with children overnight and bring in their own food.if your d is at a child hospital that should be possible.if she is at an adult one and you can find a Ronald McDonald house so that you have somewhere to sleep and can go in every day would that work?
Sotired42
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floating
Althea

I notice your daughter has now been inpatient for 6 weeks?
Has she gained any weight or is her weight still around 38kg

If no progress has been made then there are loopholes
She should be gaining around a kilo a week

If no positive steps forward then I am afraid you are going to need to get LOUD and I do not mean scream!!
  • write letter to the manager of the unit expressing your concerns and the changes you need to see/things you have noticed are not ok...
  • Keep expressing concerns regularly as by now you are entitled to if no progress is being made, this is your child and you are her biggest advocate for care

NG feeding should and can take place alongside eating if oral nutrition alone is not resulting in weight gain
I would maybe try to transfer to another unit if you have concerns about this one if possible.....of course beds are scarce but you never get if you do not ask
Also as lots of people has advised on the past...think about pulling your daughter pot of college, college can wait her life is more important and she does not need the added stress....she can always repeat year, sad I know. My daughter has not even completed school and is missing going to college as 2 years out of school.........who cares education will always wait for them

You sound like a very loving able mother and this will stand in your daughter stead to aim that arrow to recovery

Keep popping back on here as i find it very supportive with a vast amount of useful info

Thinking of you and daughter..........recovery is possible for everyone........you can do this, stay strong xx


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Alethea
Thank you for your thoughts..I did get very loud after repeated phone calls to consultants. I spoke to the assistant clinical director, asking for another dietitian to review her meal plan which had allowed her to keep losing weight, immediately, and that her meal plan go up from then. It did.  An investigation is going to follow into what went wrong (8 weeks IP and losing weight on 1-1 in hospital) and there will be a meeting next week to discuss how to go forward.

They upped her meal plan 3 times this week.It remains an unbalanced, repetitive diet which they added to rather than changed for more nutritious food. She has 1.4 lt of juice (previous dietitian's idea). They seem to negotiate with my d. I just do not understand how you can do that. She is in no fit state to be consulted..but still they do.

Poor soul has got used to the an friendly environment so her anxiety is spiralling at recent increases. Too low a wt for medication. We are trying so hard to get a transfer.  Does anyone know if the NHS will transfer to a Priory unit or does it have to be another NHS unit?  I ring and email daily, but beds are desperately scarce and they all tell me I am lucky my d has a place.Has anyone managed to hurry a transfer? we've been told it could be another 6 wks +.

Sotired, I would be forcibly removed from an adult ward if I tried to bring food in! D would go into major melt-down. England is so different. We visit at weekend. She studies all day for uni end of term exams and it keeps her busy, with something else to think about. Her degree is the least of our concerns but it matters to her and uni is being very supportive about sitting exams and finishing the year. She knows she has to take a few years off after this.  Hugs to you all  
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floating
Alethea

We have just gone through the same issue........no gain in 6 weeks on 1-1 special 24 hours a day

They at last NG and bolus fed 8 days ago and D has gained 1.7kg so can be done and calories 3500

Makes me angry for you that your D is in specialised care and not gaining, ridiculous and time wasting and just makes poor D comfortable but real D is losing hope as she can see they are not on top off things.........

If poor D does not gain soon I would be pushing for NG feeding as sotired said
My heart goes out to you both and I hope you get a bed elsewhere very soon

Negotiating with D is not good idea as you know and cannot understand all the juice as normally they are on 2000ml of fluid, why all the juice, milk would be better

Fingers crossed for a move and well done you for being loud and making changes!

xx 


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Sotired
That's ok,I don't know how things work in the UK-here the food can be pretty foul,so it's common practice to bring some food in-I have one friend who is in hospital a lot that I usually end up taking a meal to at least once every stay!
Push for Ng then-it is of some help in these situations.if she isn't gaining you will have to fight where it will do the most good-if transfer isn't an option,then Ng has to happen.if your out patient team-even if that's your ds GP or her pysch,anyone who has some contact with the hospital can help you there then use it.
If they can't and nothing is changing then look into a human rights lawyer to help your d get tube,even if it's under the MHA.
I looked up the bill of rights for patients and the laws regarding treatment.i gave the information to our adult services team.i get everyone I can to be some help in pushing for what my d needs.i am not always successful but all any of us can do is our best.hope these suggestions are more helpful.
Sotired42
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Hebrides
Hi Alethea, so sorry for everything you and your d are going through. I really hope there can be some positive change soon - whether it's getting the tube in/getting a transfer/using the MHA (or all 3).

It is certainly possible to transfer to a Priory unit (or any private specialist ED unit) from the NHS - as far as I understand it, and how it worked for us, was that the referral went from CAMHS (our d was 15 at the time and on the paediatric ward in a general hospital) to a central regional facility who approved funding and then CAMHS were able to look for a bed. We were offered a bed in a private unit but it wasn't available for 3 weeks - the plan was for d to stay on the paediatric ward and transfer directly to the unit, but her mental state deteriorated and she became actively suicidal and very distressed. She was sectioned, then transferred the following day as an emergency admission to a Priory unit for the remaining time before her bed came up in the other unit. 

So for us in a practical sense the process made no distinction between private/NHS units (d later transferred to a CAMHS unit as well!). I hope this information helps.

Sending strength and hugs

xx
Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
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iHateED
Thinking of you and sending you strength and hugs.  Hang in there! 
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Alethea
Thank you all, am trying everything to get that transfer to unit she trusts and made very good progress at.

After 9 weeks IP she has finally put on half a kilo (38.5 now..so at least stopped losing!!)

Meeting with team has set out new targets (don't think there were any before), new dietitian and consultant, and promise to review and act. Full of hope for some progress rather than this stewing indefinitely in low weight misery. Real eye opener to how different NHS units can be. We've been lucky till now. Ng and 2nd sectioning held off for moment.

Unit really struggles with drawing line between coercion (illegal without MHA) and gentle persuasion (they don't do) hence permissive AN culture! Thank you Hebrides re transfer from NHS to a Priory. D really freaking out on weigh days. Blame unit as got her used to their regime (or lack of). Sigh.
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