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tammy

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Reply with quote  #51 
Forgot to say wishing you and your family lots of luck with re feeding and hopefully you will have a quick recovery. Onwards and upwards from here.
Tammy
Nicstar4

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Reply with quote  #52 
Hi Cazrella, hello and welcome. Sorry you have to be here.
Not helpful Dr scaring you all in hospital!
Hope that you get good support and care there.
You are lucky you found this place. It is a wealth of information and support
Cazerella

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Reply with quote  #53 
Hi all, thanks so much for all you good wishes and support.
Just to update you all, it has been a frantic few days. We were kept in the medical ward overnight getting IV fluids and an eye kept on pulse etc. I slept on fold down bed beside her and managed to get a reasonable sleep for the 1st time in days. The next morning we were moved out to the general ward with all the babies etc. I reported the incident regarding the Dr to the nurse in charge, although declined to make it formal as I do feel she thought she was helping. It was passed on to the consultant who will deal with it.

That morning her health took a turn for the worst with heart rate dropping below 50 and consultant was very concerned with rythm she was not on cardiac monitoring. It was all very frantic and critical care came and she was transferred to the high dependency unit where she still is.

Reassuringly they wanted to rule out any medical problems as it has been a very short deterioration over the last 6 weeks. So she had an abdominal ultrasound and barium swallow yesterday and was due to have an MRI of her brain today. The scan showed an abnormality called SMA (superior mesenteric artery syndrome). This is an obstruction in the small intestine. Because she has lost essential fat stores internally also she has lost a fat pad that normally stops the mesenteric artery and aorta from compression the 3rd part of the duodenum. So this would have contributed to the increased vomiting although it may have started with purging we don't know.
So they could not pass NG tube and instead she has just returned from theatre with a general anaesthetic to place a NJ ( nasal jejunal) tube. Feeding to start shortly. Although I think this is what she fears the most and even amongst all this she has a fear of weight gain.
They will monitor her closely over the next 24hrs in HDU in case of refeeding syndrome. Then if okay she can move to normal ward with a view to transfer asap to the specialist unit.
There is some talk of CAMHS bank nurses working with her over the weekend in case of her becoming upset with feeding. I'm not sure how I feel about that and I am probably nervous given the incident with the Dr. I feel I should be with her should she become distressed, given her age, ADHD, and the fact I know her best. I know at some point I will need to trust other people to look after her but random bank nurses worries me slightly.
toothfairy

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Reply with quote  #54 
I am thinking of you, this is so hard.
Huge hugs,
I hate this awful illness..
Hopefully with the nutrition going in she will be stable asap.
I hope you get some rest over the weekend.
X TF

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Ronson

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Reply with quote  #55 
Hi - we had the camhs nurses visit us at home and they were all very good x
mimi321

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Reply with quote  #56 
Hopefully the nurses will be good, they may surprise you. I found the nurses we encountered good when we went in, actually had a better manner about them than the doctors and my D trusted them more. Hopefully that will be the case for you as it is nice to get that support. They were also a shoulder to cry on when you get a good one who comes and checks on you. Often they are Moms, too, and just kind of get it and will do what needs to be done. I'm sure your D will be glad to have you near as well, of course.

I hope everything goes well over the next few days with the feeding. It is good you are where you are now, and they can monitor everything and help get your D on the road to recovery. She will be fearful at times, that is natural in this situation, just try to appear as strong, confident and calm as you can in supporting her. This will go a long way. Take care. 

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scaredmom

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Reply with quote  #57 
Hi there, 
So glad she is getting the medical attention and support! I know it is hard. 
I know you are worried about the bank nurses, are you allowed to be there as well? 
Thinking of you, hoping all goes easier now.
XXX
tammy

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Reply with quote  #58 
Hi,
What an awful time you have had. We had a CAMHs nurse see us in the Children’s hospital in Glasgow and she was amazing. We were there whils she worked with our son.
Take care and sending lots of good wishes for your whole family.
Xx
Cazerella

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Reply with quote  #59 
Quote:
Originally Posted by tammy
Hi,
What an awful time you have had. We had a CAMHs nurse see us in the Children’s hospital in Glasgow and she was amazing. We were there whils she worked with our son.
Take care and sending lots of good wishes for your whole family.
Xx


Hi Tammy,

It is Glasgow we are going to when she is stable. How long did your son stay? What is it like? Was it the special eating disorders unit?
Mcmum

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Reply with quote  #60 
Good grief, it's a tough time that you're all having but we are all there with you in spirit. My only experience with camhs nurses has been really positive. They've all been lovely so hoping your bank nurses are too. Some reassurance in there regarding the vomiting in a way. Wishing you all the best. As the food goes in and weight goes on it will eventually get better x
Torie

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Reply with quote  #61 
Hi Cazerella - It sounds like your d is getting the care she needs, which is of course the first step.  So they agree she needs to regain the weight she has lost?  Have they told you what increase they are aiming for?  I'm so sorry you d needs to be in hospital right now, but I hope it gives you a chance to catch up on sleep and build up your reserves as your d needs you to be as strong as possible.  Do they know how long she will have the NJ tube?

I'm so sorry to be full of questions.  I think often the young patients get kind nurses who treat them well, and I certainly hope that will be true for your precious d. 

If at all possible, I hope you will encourage your d to keep eating some by mouth even with the NJ tube, and if that is not possible, it seems to help to maintain whatever exposure to regular food as you are able.  She can surely have food presented to see and smell and I think be encouraged to taste even if she is not actually eating by mouth. 

To be honest, I am a little skeptical about this recent diagnosis because it sounds very rare and somewhat controversial that the condition is even a real thing.  So I am optimistic that it will resolve with weight gain and reinstatement of the expected fat stores.  And I am pleased that in either case (AN or this other diagnosis) that the first step is weight gain.  So I suggest that you focus on the weight gain and providing whatever comfort to your d as you may be able.  And, as I said, in making sure you are catching up on your sleep and generally attending to your own wellbeing so that you will be in a good frame to assist your d.  Your d is lucky to have a mum with medical training as that will (hopefully) give you some credibility in their eyes and also I'm sure some good practical experience in providing care for your d.

I think this will work out.  I will keep you and your d in my thoughts. xx

-Torie


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Nicstar4

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Reply with quote  #62 
I hope that you can get some rest soon. Glad that she is being monitored well, and all possibilities are being looked at too. Team focus on the weight gain is a positive sign.
Look after yourself x
tammy

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Reply with quote  #63 
Hi Cazarella. My son was thankfully only in for one day then discharged for CAMHs the next day. Working for the NHS I did lots of research and spoke to the NHS GG&C eating disorder team and they were brilliant. I work for NHS GG&C but we come under NHS Lanarkshire. I wished we were in Glasgow as their services are so much better.
Wishing you all the best. X
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