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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Cazerella Show full post »
tammy
Hi Cazarella,
Our stories are similar in that my son was diagnosed at a very young age last August, I am in Scotland and I work for NHS as a Pharmacist!
If you can go along to see Eva Musby please do. She was invaluable to me. I did some coaching with her and it was great. Her online videos are also great.
Good luck and please be reassured with patience, love, feeding and the help of this forum you will get your daughter back again.
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Mcmum
Hi Cazerella and everyone,
A lot of great advice here. How are things going? We are still trying to cope with son's bloating but haven't really found anything that helps. He just needs lots of reassurance. With regard to avoiding dairy, we put ground almonds in everything.
How are you coping generally? Sending warm thoughts x
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Cazerella
Hi Mcmum. The advice is amazing. It is just so hard. The vomiting yesterday took us backwards. We are seeing consultant at 2 tomorrow. I just need reassured that I am keeping her safe.
Ground almonds is a great idea can he taste them? Have been adding oil where I can.
How is your son now ?
Struggling a bit but strong with her. Husband seems to be struggling and cannot seem to take the right approach and ends up shouting which makes her worse. The nurse said it was vital we both took an equal approach so she didn't end up refusing for one parent. I have reiterated this to him. I haven't slept for days as she is now not sleeping and I can't sleep till she does so I know she is safe.
Be glad to get her seen tomorrow.
Thanks to everyone for your support, knowledge, links and resources. Very interested in the conference or maybe start with the book and consider coaching. Hope you are all okay x
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Mcmum
Good luck with the consultant. It will hopefully be reassuring and you can ask any questions that you need answering. I haven't had experience of vomiting and I understand it's really challenging.
Ground almonds and rape seed oil I added to everything and my s was oblivious. The rest of us have put weight on but none of us care any more!
My h veered from aggressive denial that there was a problem to being absolutely brilliant but he's tiring of it now and can be a bit shouty too but then so can I sometimes. It's really hard remaining calm when you're feeling anxious and upset and desperate yourself isn't it???
My s has just returned to school, is kind of weight restored but now growing upwards at a rapid pace and is largely much more like his old self. You too will experience this in time but those first few months are especially tough and I don't think anything we have ever experienced can prepare you for that. He has blips: yesterday he became hysterical about a cup of tea and took 90 minutes to eat a bowl of soup but there's more good than bad these days. Found it helped to give up asking why him? Why us? Where did I go wrong? I just try to roll with it now but not easy especially when you're not sleeping and it feels like you're in some kind of weird nightmare. Truly you are doing well. Keep doing what you're doing and you can all come through this x
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MamaDo
Hi Cazerella,
Glad you found this forum, but sorry you had to. There’s a lot of great advice here; 3 months ago I was where you are. My 12 yo D was purging every meal, her BMI was down and I was waitlisted for my area’s ED program. This forum saved us during the 2 month wait to get into the ED program.

Purging is so hard. For the first month, we were with her all the time. Privacy was gone - no bathroom trips by herself, no showers by herself, no shutting herself in her room. I held her close - literally - after every meal, trying to distract her from ruminating about food. Sometimes this didn’t work so my H or I blocked the door to the bathroom. There were a couple of 30 second windows that ED took advantage of, when we got distracted for just a minute, and we didn’t catch her in time to keep her from purging. We also had to sleep with her for awhile because she was getting up in the night and doing dangerous things recklessly - she’d burn herself with a curling iron or cut herself, all “by accident”.

We plate every meal, and a couple of times a week she resists and ED comes raging forward, but we hold strong and the food goes in and stays in, and she is at WR.
(FYI, for dairy replacements, we used sweetened soy milk. Tea “lattes” and “frappes” with sweetened syrup were mainstays, because our ED didn’t count drinks, thank goodness.)

This forum saved us, and empowered me with the support we needed to battle our daughter’s ED. Stay strong, have heart, and come back often.

Xoxo
MamaDo
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Cazerella
Hi all,
We are in hospital. She was dehydrated and consultant couldn't get bloods. So we are in sick kids hospital to stabilise her then there is a bed available in the specialist unit for under 12s in another city not far from where my elderly parents live.

In a way I am relieved, but also so scared especially after a Dr ( who I am sure thought she was being helpful) tried to get through to her the severity of the situation. I felt it a bit unfair since she made it clear she would not be the Dr looking after her and was due to go home. She went on to tell her how several children her weight has gone on to die. Given that she is ten, I was a bit dumbstruck. Although my ultimate fear is her death I believe she can survive, I have to. X
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krae
I can't believe what the Dr said to your D, it is disgraceful and very unprofessional, especially given her age. Be thankful that that Dr was not the one going to be the one looking after D! The sooner she is stabilised and transfered to the specialist unit the better. I'm sure they will be more tactful and age appropriate in dealing with ED.

Never stop believing in her survival, she is so young and has much life to enjoy once ED has been banished from ever talking to her again.

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tammy
Hi Cazarella. I am sorry to hear that but she is in the right place. At least at the specialist hospital she will have people caring for her who understand the illness. Trying to make child see severity of condition, talking about consequences of not eating and reasoning does not work. Their brains are malnourished and no amount of reasoning will help.
It is very difficult for a lot of the family to deal with not eating and the anger and violence associated. My Husband found it hard to see me so upset and to deal with the terrible outbursts and behaviour. He was working and didn’t have time to read Eva Musbys book but I directed him to the most important chapters. The video where it likens the fear your child is experiencing to having to face a bungee jump really helped us understand what my son was going through. You can get it on Eva Musbys website.
Feel free to personal message me if you like with any questions as we both have very young children and are in Scotland. I am no expert but will help if I can. X
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scaredmom

Cazerella wrote:
Hi all,
We are in hospital. She was dehydrated and consultant couldn't get bloods. So we are in sick kids hospital to stabilise her then there is a bed available in the specialist unit for under 12s in another city not far from where my elderly parents live.

In a way I am relieved, but also so scared especially after a Dr ( who I am sure thought she was being helpful) tried to get through to her the severity of the situation. I felt it a bit unfair since she made it clear she would not be the Dr looking after her and was due to go home. She went on to tell her how several children her weight has gone on to die. Given that she is ten, I was a bit dumbstruck. Although my ultimate fear is her death I believe she can survive, I have to. X


I am so sorry that the doctor was so blunt and insensitive. I do think she meant well to "shock" your D but she is so young it was uncalled for.

I believe too she WILL survive this and so will you.
XXX

Food+ more food+ time+ love+ good professional help+ ATDT + no exercise = healing ---> recovery (---> life without ED)

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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Torie
Hi Cazerella, I'm really sorry your d has to be in hospital.  Given that she was dehydrated, though, I'm glad that they admitted her.  Do they let you stay with her a lot of the time?  If you have time and inclination, please tell us what they are doing to get the nutrition in.

I agree that it was clueless and appalling for the doc to say that to your young d.  Maybe the silver lining is that they are taking this very seriously?

Thinking of you. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Mcmum
Hi Cazerella, I was wondering how the appointment would go and am sorry that your d is in hospital but hopeful that she will get the treatment she needs and that rehydration and refeeding will begin in earnest.
Wishing you and your family strength and courage. Love, food and willpower to stick this out will win through xxx
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deenl
Hi Cazerella,

My son was also pretty young and it feels so unfair that they have to experience a life threatening illness with a difficult recovery path.

But, believe me, we are the 'lucky' ones. Rates of recovery are much better in this age group and they are under our beady eye for almost a decade! Almost a decade to make sure that recovery sticks. When you are passed the absolute hell you are in now you will realise how priceless that time is.

In the meantime, the learning curve is huge. The Kartini Clinic blog has lots of useful information about the young ones. Sorry phone playing up and can't post link.

Wishing you strength and courage

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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tammy
Hi Cazarella, What Deenl is saying is right. My son who was only eight when he was going through this last year doesn’t even seem to remember what he went through last year. There are no behaviours left and he is in a good place. He doesn’t even know he had an ED. He thinks he had a virus!
Tammy
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tammy
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
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Nicstar4
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
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Cazerella
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.
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Ronson
Hi - we had the camhs nurses visit us at home and they were all very good x
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scaredmom
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
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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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
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Cazerella
tammy wrote:
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?
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Mcmum
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
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Torie
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

"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Nicstar4
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
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tammy
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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