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

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Elena
I'm afraid this is just a moan. This time of the year is hard, all the Christmas stuff, but also here it is the end of the school year. So my d attempted exams for her core subjects only, her choice, we'd have happily had her exempted from them.  After missing half this year of school, there was stuff she just couldn't catch up on, and we weren't pushing, food is still more important for her.  So we don't expect her to pass everything. How did we get here? Our bright dedicated student, who suddenly can't pass year 10? 

The more stressed she is the more stomach pain she has, and thus finds it harder to eat. This week is her graduation night, and I really don't want to go, she used to receive awards but now won't pass, so a graduation night seems ironic. Mind you she does not have to pass year 10 to go on to college, how does that work!!! so she's enrolled for college (years 11 and 12) next year. I'd so like to think that it will be a fresh start for her and that she may possibly be healthy enough and in decent mental health to cope with it all, but really I just think we are in for more trauma. I've said I'm happy for her to take a year off schooling, or for her to go very part time with her study if she is too stressed or unwell, but just now she wants to do it all. 

And then tonight she had her leavers dinner. I really did try to get into it all, buying the dress together along with everything to go with it, and the trip to the hairdressers and getting the makeup done, but my heart was only half there. I'm trying hard to accept the gf, but I don't know how we got here either. If this is what it takes for her to be happy then I just have to get used to it. Sigh!  It would be so much easier if she was someone else's daughter.  It is so easy to know what other people should do for their children, and so hard to figure it out for your own.

She gets weighed again on Wednesday. She lost a kilo last time, and with all this stress and not being well I wouldn't be surprised if she lost again. She's been zig zaging about WR, but I feel she still needs a bit more, yet, it also seems to be time to pass back some control to her. It really is confusing. I need to get my h to check her laptop as my youngest d thinks she may be on the wrong sort of websites again. 

I've been doing well myself with my own medication for anxiety, but just now is hard again.  I'm almost finished the school year myself and it has been flat out getting everything done. Tomorrow is our end of year Christmas Party at a park, and here I am, not getting enough sleep again!!!  I'd better try to get some sleep now. 

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OneToughMomma
oh, Elena, I was you 3 years ago.  I sat at D's bedside and took up her grade 10 'graduation' dress (because off the rack wasn't going to fit, was it?).  And she didn't graduate, of course.  The school just wiped that academic year for her.  And she got out of hospital just in time to attend the dinner cruise. 

As far as dating, well, I'd be happy for her to have anyone of any persuasion as long as they treated her well and made her happy.

Things seem bad for you right now, but do know that it will get better.  Not perfect, but better.  Academically my d got it together and earned a good OP.  Health-wise she has had a little blip but is doing well as an almost-sort-of-YA.  She is working hard to gain lost ground and hoping to get it together to go to uni in February.  And I do think she'll make it. 

And I think your D will, too.  Just keep in mind how far you've come and what you've accomplished.  Things are better than before, right?  and next month will be even better. 

My advice to you would be not to give up control too early.  Sounds like she is not ready if she is losing weight.  If I had our journey to do over, I'd push her weight higher and supervise meals longer. 

Keep in mind that your goal is a really long-term one.  A healthy adult will have a long life, and that's what you're aiming for with D.  You can justify the time, energy, money and emotional toll if you remember to look far ahead at her future.  So if she misses a year (my D had a gap year, and will take another if need be), that's not significant in the big scheme of things.

You truly are doing great.  Just keep going.

xoOTM

PS Keep up with your health and enjoy the break!
D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
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Elena
Well, I was wrong!!! My d did pass Grade 10, in fact she passed almost everything. After missing much more than half her year at school, I'm not sure how she managed it.  When she was at school she worked very hard, but I know that there are big gaps in her knowledge, especially in Maths and Science, but she could just not cope with school, and then I had to keep her home to refeed her. Still quite amazed and very relieved. I thought she'd pass English and History as she is a natural in those subjects, but didn't dare dream she'd pass all her core subjects and almost all her other subjects too. 

I was even brave enough to post a sweet photo of her Leaver's Dinner, of her and her gf on facebook. She looked gorgeous and very happy.  Maybe my girl is getting her life together again???? I hope so, i really do.
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sk8r31
Glad to hear that the exams turned out much better than anticipated!  Sometimes it truly is amazing what our kids pull off, while so ill.  

While marks and exams aren't the priority...it is still a relief that your d is not having to face being behind in schooling.

And how lovely to know that she had a good time at her special school dinner with her gf, and that you were able to publicly acknowledge that....I expect more than anything she is happy to have your love and support.

It's wonderful to see the forward steps, and to know there is light at the end of the tunnel!

Congrats to your girl, and to you too for hero parenting!
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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louise4nz
So glad she passed [smile] As for the gf, I know how you feel we had a transgender bf last year and rolled with it, anything to see our girl smile. She broke it off after several months saying she needed to concentrate on herself and getting better. Sadly she has relapsed after 7 months of normality so we fight again.

Parenting through illness is so difficult.
Louise

D 20years had AN since April 2014, FBT discharged June 2015, Relapsed Oct 2015, multiple hospitalisations, self discharged from care Oct 2016, she has recovered 😃
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Torie
Oh yay so glad to hear the good news! Surely that will dial down the stress level a bit?

Keep going ...

xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Sotired
So good to about your d having a nice time with her girlfriend at her leavers dinner,good on you for working your way through everything to the point you can post a piccy of them together!and it's great that she passed her exams,though honestly I'm not surprised,it's their very smartness that seems to make this such a tricky illness to come back from.
Hope you are doing better and that your little girls hands are better from all that hand washing she was doing.
Am trying to motivate myself for Xmas,dismal failure at it today,but that's cause it involves sorting out the house and I'm just too tired to do it.hugs to you,
Sotired42
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Elena
Thanks guys! It is sooooo nice to be feeling better about her.  Her weight is OK, she passed Grade 10 and her girlfriend is a really nice person.  One of her teachers said that our d was a really special girl, and suddenly it hit me that we, her parents, have not been seeing her as our special d, but as "the problem". So much so, that we almost forgot who she was. And now I'm desperately hoping that she'll be back, not the same as before, but eventually healthy, happy and determined to live a full life. Isn't that what we all want?  I hope I'm not getting too far ahead of myself.
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Doitagain
Hi Elena, I don't think you are getting too far ahead of yourself at all. You deserve to celebrate the victories whether they are big or small - we need them! Your D sounds special to me.

You know your last post made me think of a story that I'm pretty sure I read here. If I can find a link I will post it, if not, perhaps somebody else could. I think the post was called "welcome to Holland". Bizarre title I know. Essentially it's an analogy about someone who spent their whole life dreaming about going to Italy. the pasta, the clothes, the art, the architecture, the weather, the lot! Eventually the opportunity came. They boarded the plane looking forward to all the things they'd dreamt about so long. As they landed the pilot said "Welcome to Holland". Holland????... The person thought, I don't want to be in Holland , I want to be in Italy - this is what I'd planned for my whole life - I know what Italy will be like - I know I'll love Italy"!!!! I don't know Holland and I don't want to be here". They disembark and start to look round Holland , there are canals, and bicycles , and chips with mayonnaise, and people speaking Dutch . and Rembrandts and .. And the tulips .. and Holland has windmills"...

They realise that they are somewhere very very different , ... And after a while they realise that if they don't take the time now to look around where they are at now, they might miss some of these good things.

I haven't told this story properly I'm sure and it may not make much sense without seeing the proper version. But... I think I am in Holland when I'd planned for Italy. My life is very different - my journey to Italy would have been much easier and more familiar to me but instead I've landed here. Maybe I am only starting to like the tulips now... Maybe I still hanker after Italy a LOT , but would I have liked it as much as I thought I would? Who knows because our life too has taken VERY different course, as yours did Elena, but I believe that we will both love where we end up and be better for it. (Our journey there is a bumpy ride though. They left that bit out of the story!!!

Feeling somewhat philosophical tonight - apologies and well done to youx
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Doitagain
Me again - I found the post and it was by Perdito back in 2012. It was written by Emily Pearl Kingsley about having a disabled child. I've just realised that it is quite controversial and indeed well known, as some relate to it and others don't like it at all , so maybe dont google it but for some reason it struck a chord with me. Maybe I prefer my own version of it!!! Well done to your D - Grade 10 must be just the most lovely surprise when you were not expecting it' xxxx
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Elena
Thanks Doitagain, I'm pretty happy with your version of the Holland story, I have heard something like it before as an analogy of having an autistic child, but hadn't thought to apply it to my d.  I think that the main thing is to be aware how our own attitudes can effect how we see things. It took me seeing  my d through her teachers eyes to see that despite our struggles that she is still a great kid and that she's got a lot to give the world.  I'm not sure that kids ever end up exactly as we would like them to, but there is quite a possibility that they will end up better than we could ever have imagined, and all the work of wresting them from an ED will be well and truly worth it.  For so long the ED seems to take over and dominate so much of their lives and personalities, and although we try so hard to separate the ED from the child/YA, it is still really easy to forget all that is good about your child.

Never apologize for being philosophical, it is how we make sense of life. Anyway, I hope you are becoming acclimatized to Holland yourself. I think landing anywhere after a bumpy ride is better than circling around looking for a landing place.
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Morgana
Just catching up now, so happy to read your update Elena. 
I haven't read the original Holland story because I quite like Doitagain's version as well [smile]
15yr old d. June 2014 stomach pain. Medical investigations until Feb 2015, referred to CAMHs dx food anxiety. Kept restricting and losing weight until July 2015, medically unstable. Began intensive re-feeding at home. Re-evaluated by psychiatrist, dx Autism Spectrum Disorder and Atypical AN.
Found out it's actually Typical AN.
IP from Oct 15, ng tube Nov. Re-started eating food July 2016. Discharged from IP August 2016 97% weight for height.
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Elena
Sigh! Christmas, although an improvement on last year, was still very hard for my d. She ate reasonably well for Christmas dinner, but straight after it was obvious that the ED was giving her grief. She has struggled again today. 

I had been hoping that now her exams are over and she has done OK at school, that her anxiety would reduce somewhat, and with it her stomach pains, but it was not to be. I'm so tired of her being in pain all the time. Still wonder if there could be some other cause for it and not just ED. The doctor has referred us to a specialist, as the hospital didn't check her out as well as our GP hoped they would. I just want her well, it feels as if we've been trying to make her better for so long, and although on the whole , she is doing better than she was, she is still far from right. Seeing her still in pain, just does stuff to me, and i feel useless. At what stage, I wonder. do they really start to be better?
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IrishUp
Elena - I am sorry that your D continues to struggle with stomach discomfort. I think checking it out more thoroughly to rule out anything else is a wise course - just b/c you have A, does not mean you are now immune to B, unfortunately. At the least, may it set the worries of the unknown to rest, and offer a more clear course forward whether "merely" ED related or not.

In either event, modern pain management techniques rely on a combination of medications, physical, and cognitive-behavioral approaches. The short story is that we are come to realize that "pain" and "pain tolerance" are not simply issues of blocking signals from nerve endings - individual people vary so much in the perception of pain and their ability to be functional around it, BECAUSE much of how we *perceive* our pain and what we do about it, depends on our cognitive-behavioral learning around pain.

I tried to read back some posts to see if you discussed more specifically what you are trying, but didn't find anything - I apologize in advance if I am making suggestions that you've already  tried. But it might be worth it to see if you can add in more pain management techniques to deal with her stomach issues - distractions and breathing exercises are two of the most useful, in our experience. We also got good results with the warm & heavy blanket wrapping (as kind of a full-body "swaddle" if you will) as a soothing & comfort measure. "Gilmore Girls" and card games and music were our main distractions.

It sounds as if she is experiencing anticipatory anxiety around her expectation that eating is going to be uncomfortable. This is really common and really understandable, and has the unfortunate effect of creating a  self-fulfilling prophesy; when we are anxious, our bodies go into "fight or flight" mode - our adrenaline levels go up, and blood circulation to our gut shunts off. This in turn acts to make having food in our stomachs REALLY uncomfortable - many people find that they feel like they need to throw up, or have bad cramps. These reactions are the direct result of the physical changes stress/anxiety causes.  So any measures you can take to alleviate pre-meal anxiety by distraction & soothing should also be helpful.

It IS frustratingly slow going, and often it happens so gradually we don't really notice it on a day-to-day basis. I find it helpful to make conscious efforts to think about what is different now and where progress has been made - keeps me from feeling like I'm just stuck in a swamp!

ETA: Some useful links for potential ideas

http://www.nhs.uk/Livewell/Pain/Pages/10painself-helptips.aspx

http://www.webmd.com/pain-management/features/cognitive-behavioral


IrishUp
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Elena
Thanks IrishUp, I looked at the links you shared and I think there is some help there. I suppose I find it difficult to accept that my d has a problem with chronic pain, but after 2 years of almost continuous pain, I guess that counts as chronic. We are doing, or have tried, many of the above suggestions for helping her with her anxiety and pain, mind you just now in the middle of summer in Australia is not a good time to try swaddling with warm blankets!!! She's been WR for some months now and I suppose I hoped for more immediate improvement in her level of pain. Our journey really began when I held my d in my arms and she was in tears because of the pain, and she said "Mum make it better" I foolishly promised her that I would make it all better. So since then I've been trying to make it better, much to her dismay and disgust and anger. Of course that all gets used against me now, "You said if we did all this (eating) that it would get better, but I'm not better, you've made it worse." you know the usual ED stuff.  So I feel guilty that I haven't been able to take the pain away, and it is pretty constant. She also gets frequent migraines and very bad period pain, but at least she has her periods, so I shouldn't complain too much.

I may give her second psychologist (yes she has two, don't ask) the heads up on some CBT for chronic pain management, and that could be our best way forward at this stage. So thanks for the advice.
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Morgana
I am so sorry the position you are in now Elena. I hope you don't mind me sharing my experience with our d and pain, it may or may not be relevant so please take what you can from it. 

My d complained of pain for over a year. We went to doctors, consultants, she had lots of blood tests, ultrasounds and even a scope under ga to find the cause of the pain so it could be fixed. Every time she ate she had pain. She cut out foods and drinks she thought caused the pain, until she was left eating boiled carrots, baked apple, lettuce and rice cakes. 

She was seeing a psychologist who was doing a lot of work to try to help her manage the pain. Nothing worked. Hot tea, hot water bottle and not eating helped.

She was dx with a-typical anorexia ie no body image issues,  and we started re-feeding. The pain increased as her shrunken stomach was made to expand. An obvious reason for the pain. But shouldn't that only last a few months?

And then one day I looked on her phone. Browser history was cleared but I dug deep and found her search history. It was all about the calories, weight loss, body image, every day, going back over a year. And you know what, not one mention of pain. My search history was full of references to stomach pain, but not for the girl who had complained of pain multiple times a day every day for over a year. She wasn't looking for ways to cure her pain, she was looking for ways to lose weight by eating sweet potato, exercise quietly in her room and obsessively looking up the calories in blueberries. That's just a few examples.

I'm not saying she didn't experience pain, but I do think it was a special type of pain caused by the ED punishing her for eating, making it so she couldn't eat, getting her so anxious about the calories that it caused physical pain. And it provided an understandable reason/excuse to restrict.

I don't know if this could be the same for your d, but every time I read about other children experiencing pain months and months into re-feeding I think of my d.

Once I discovered the truth about her ED the complaints reduced, and was swapped for simply "I don't want to eat that, it's too much".

And my guilt at not being able to fix her pain was swapped for all the emotions that come with not being able to fix her ED. 

I hope this helps in some way x
15yr old d. June 2014 stomach pain. Medical investigations until Feb 2015, referred to CAMHs dx food anxiety. Kept restricting and losing weight until July 2015, medically unstable. Began intensive re-feeding at home. Re-evaluated by psychiatrist, dx Autism Spectrum Disorder and Atypical AN.
Found out it's actually Typical AN.
IP from Oct 15, ng tube Nov. Re-started eating food July 2016. Discharged from IP August 2016 97% weight for height.
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