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catbells

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Reply with quote  #1076 
Sotired I'm in bits reading your updates. As others have said you are an inspiration ; in my early days on this nightmare journey you were one of those dear Feasties offering good solid no nonsense advice and support. I so needed that (and still do).
I wondered how you coped and prayed that one day your dear d would get a break. To hear her progress and eventual diagnosis must be a huge relief. She is at last living a life.
You will sort your middle d out. ED wouldn't dare pick on your family again. However as always vigilance is the key.
Sending happy hugs to you all xx

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Mum to 16y/o D living in England. RAN since Sept 2015. Refed at home but after getting within 3kg of WR D relapsed July 2016. hospital twice for 2 and then 5 weeks. Now IP since Sept 2016
catbells

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Reply with quote  #1077 
Sotired I'm in bits reading your updates. As others have said you are an inspiration ; in my early days on this nightmare journey you were one of those dear Feasties offering good solid no nonsense advice and support. I so needed that (and still do).
I wondered how you coped and prayed that one day your dear d would get a break. To hear her progress and eventual diagnosis must be a huge relief. She is at last living a life.
You will sort your middle d out. ED wouldn't dare pick on your family again. However as always vigilance is the key.
Sending happy hugs to you all xx

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Mum to 16y/o D living in England. RAN since Sept 2015. Refed at home but after getting within 3kg of WR D relapsed July 2016. hospital twice for 2 and then 5 weeks. Now IP since Sept 2016
Sotired

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Reply with quote  #1078 
You guys rock-thank you so much for your support and happiness for us.im still adjusting,but we are on our way to enjoying life I hope.h and I are still struggling a bit with emotions-worry,stress,I worry about catastrophising because I'm so used to living high stress that I could easily end up over reacting to things that aren't that big of a deal (just normal dealing with ASD stuff).
And of course getting weight onto middle d.am hoping against hope that this weight gain will be as easy to achieve as smallboys was.
I hope and pray that life continues to be normal for us but all too aware how fragile that hope can be.
Wishing you all strength in the journey and thatbwe all get to experience boredom ...what a treat after years of stress...

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Sotired42
scared_and_exhausted

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Reply with quote  #1079 
Sotired your news is wonderful, and it's so good to hear of your daughters progress. Is she getting better physically?
And try not to worry too much about d2 (Not easy I know!)
You've got this.
Sotired

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Reply with quote  #1080 
No, she is not getting much better physically.she is the happiest she has ever been,is loving her course,getting close to full marks, BUT, today my h had to pick her up from her course and tonight she is back in hospital with a stomach bug.she still asked for her feed to be brought in,bless her.she is still very frail-when she came back here today I asked her to call her doctor to give a heads up that she was unwell so she did.they rang back an hour later with bad blood results so her dad went with her to hospital while I looked after smallboy.
I don't know how things will pan out long term-I suspect not well and we will outlive her.its not something I like to focus on but it's always in the back of my mind.my physio likened my life to juggling knives and always waiting for one to fall-and he's not wrong.i woke up feeling sick to my stomach and wasn't even surprised to recieve ds call this afternoon.
She also needs a bit more common sense-her course is off four days,on for three and she should spend the day before course restarting resting but instead she spent it hanging out over here with a friend.if she had done that on Sunday she could have got us to help by dropping her back.
Sigh.they all learn the hard way,I was no different,but it's hard when she suffers so much for any mistake made.
Hopefully she will come out tomorrow night.
Gastroparesis sucks.

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Sotired42
EDAction

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Reply with quote  #1081 
Thinking of you and your family sotired . . .

Thanks for keeping us updated.
mjkz

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Reply with quote  #1082 
Sotired, hope she is out and back to her class.  It will take awhile for her to learn how to pace herself. She just moved out and is probably living alone (or without you right there) for the first time.  I know I went nuts in college that first year or so without mom and dad looking over my shoulder.  She will get there.  I'm so happy for you all that she is living life. It may not have been the life you would have chosen but she is still out there actively doing what she can and is happy doing it.  In the end, what more can you ask for?
Sotired

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Reply with quote  #1083 
Just a super quick update about middle d who had gone from 63kgs to 55kgs-one month in and she s now at 58kgs.altnough the doc initially aggravated me with talk of d being in normal weight range just barely, she then redeemed herself by saying to d that she really needs to weigh 63kg.d has accepted this with good grace thank god.
Smallboys weight continues upward-now at 34.5kg.
I have still been waking up every day sick to my stomach,but am hoping this feeling eases as my children all continue to gain weight and live happy and productive lives.
Gastroparesis d was out of hospital the next morning mjkz and went back to her course that day (it was a library half day so no standing).she comes and goes from here-when she has some emotional wobbles she comes back for a night or two, then goes back.she loves her course,is of course getting neatly full marks and has had people argue to be her partner which really tickles her!
She is signing on to do her next course there too and is planning a quick trip overseas with a friend between one course ending and the next beginning.
For me, this is quick [smile]

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Sotired42
mjkz

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Reply with quote  #1084 
So glad to hear it Sotired.  Your doc did indeed redeem herself with the upped weight.  It takes awhile for the sick to the stomach every morning thing to let up. I know I woke up for months after each crisis feeling that way, waiting for the other shoe to drop, hoping things would go well but also planning on how to handle them if they did not.

Overseas-that would be so awesome!!
melstevUK

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Reply with quote  #1085 
Sotired,

I have huge huge admiration for all that you have achieved and had to deal with.  It is fantastic that older D is now living a relatively normal life and that, more importantly, she is enjoying it.  The gastroparesis must be draining but when I remember how ill she was when you first started posting - in all honesty I had fears that she would never pull through.  I am really delighted that she is doing so well and I know with your support and vigilance your younger ones will be ok.

I take my proverbial hat off to you!!  


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Believe you can and you're halfway there.
Theodore Roosevelt.
Sotired

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Reply with quote  #1086 
You and me both melstev-I too can't believe we are managing this well after years of heartbreak.yes,it was a close run thing with the doctor mj,but as I interrupted her once to say "this isn't normal weight for YOU though" to my d she quickly went through the weight requirement to what I wanted.a BMI of 19 is not enough for anyone in my family.
I go to the gym most days tf, I do a mixture of body balance,weight training and rpm (bike classes).i train when my kids are at school mostly though and do it mainly for relief from the massive stress I still feel,currently exacerbated by a extended family situation.when I learn to be less trusting of them it will be a good day for me.
That's really the crux of it-now all the feelings that I could load into one area are dispersed over a large range of problems-i think that's just how my life is.but I'm muddling through,taking anxiety meds now when it gets a bit much and today got a massage between appointments which was lovely.
I find it's actually now that I'm withdrawing from people and am struggling to hold on to friendships-I think some left during all this but I was too stressed to notice.im just trying to get things better-still having a weekly coffee date with a friend at a time,staying in touch by text-but not chasing after people -I'm too old and too tired to worry that much,but still sad though.

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Sotired42
scared_and_exhausted

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Reply with quote  #1087 
Sotired,
I'm not much of a poster on here, but I think of you and your D often. How's everything going? Is your D's weight going up? and how are the rest of the family and importantly YOU too!
Sotired

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Reply with quote  #1088 
Hi scared and exhausted,
D is doing very well mentally and is mostly able to keep her weight between 43.5-45kg.obviously we would all love it to be more,but the pain can really affect things.our GP will not help us advocate for a peg tube even though d really needs one-she has had the NG for over a year (with tube changes every three months) but the doc keeps saying one day she will miraculously get well from gastroparesis.
Keeping in mind that my girl has had more NG feeding during the course of anorexic treatment so her stomach had already shut down for the most part ,it is frustrating that the doctor is not looking at evidence,but rather living in dreamtime.
Without the tube feeding she could not be living the full life she currently is,living away from home,hanging out with friends and a trip to Aussie next week.then she will start the next level of her course.
We are all gradually recovering from everything that has happened.some nights I even sleep well!i read battymattys thread and I so get all those feelings.
I remember when my mum died sitting thinking'what now?what is my purpose?'.for four years she had dominated every waking thought and then she was gone.we had freedom but at a terrible cost.
For me,my ds illness and our recovery is a lot like that.so I work through it one day at a time and try to remember that it's ok to relax.its ok not to spend every moment of every day making myself worthy of 'getting to stay at home'.
Reminding myself that it's my life and my other children still need me there and I don't need to justify it-I'm chronic for having to justify stuff.
I still get flashbacks but I've made my peace with that.ive left my family for the final time as they aren't healthy for me and after a rough time with many physical symptoms,I've made my peace with not having my father or sisters in my life.
I have got stronger and calmer about my decisions.
We make progress every day and that is a wonderful thing.
Thank you for asking and I hope that your life is going well too.

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Sotired42
scared_and_exhausted

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Reply with quote  #1089 
Sotired,
I'm glad to hear you're okay.I'm so sorry your GP will not help - are there any other ways to get one? Any consultants at all in NZ who could advocate for you? I'm sure you've been through it all already, but you never know...
But I'm glad she's doing well! It must be such a welcomed relief after such a struggle, and I'm beyond pleased you're taking care of yourself [smile] and it's super that you've made those good decisions. Is your D still living with you? 

Progress, any progress, is good, and you of all people deserve it after what you've come through.

All's okay here, thanks. Just the usual, D stuck at 75% wfh and refusing to gain more, around 43kg and 5Ft6, not helped by AS level stress. CYPEDS are starting the transfer to adults before she turns 18 and then everything will be out of our hands. Sometimes life is just a case of managing the anorexia and giving as much happiness and support we can, I guess. 

Make sure you're taking lots of time for yourself [wave]
Sotired

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Reply with quote  #1090 
A quick note-more like a diary entry I guess.just wanted to note the difference between refeeding a non ed child and also a teenager,vs an ed teen.whilst initially getting some push back from my middle girl who had dropped 8kg, we are now almost back to where she was-5kg on,3 to go.its taken longer than I thought,but she is doing much better.small boy who had dropped 6kg has regained that plus 4kg more as we are making sure to feed for growth too.
Happy moment tonight (does anyone else find our happy moments weird?)was watching middle d get herself mini sausage rolls and chips for dinner.
But allowing for some teen tantrums-how easy it has been.they just eat what's put in front of them.they don't hide it,exercise it off or purge it.my teen doesn't love that I check she's made lunch but she submits to it fine.
Smallboy is just easy about it all providing I take his ASD food needs into account.
Sadder news for my former ed/now gastroparesis girl.she is really struggling with keeping food down which makes her potassium go low which makes her muscles ache.she is so very tired.neither the doctor or the hospital will move her from an NG tube to a gj tube and now I don't know what to do.
My h and I have our own health problems now-he has a cholesterol reading of 'oh my god,how are you not dead??' and I have had to put us both on a strict low fat diet.i myself am hoping to have surgery on my foot this year but I need to lose some of the almost 20kg I have gained.
The difficulties in providing two diametrically opposing sets of needs is full on but must be done.the girls know why we are having to do this,smallboy is blissfully unaware.
Some days I am very sad for everything going on.some days it is hard to read others success stories even though I am so happy that other people get happiness at the end of the journey.
My d graduated from her course and though it was a lovely graduation I have to be real and realise that unless something changes she will not be able to work or even perhaps live independently.my h and I talk endlessly about what we could try next but end up with nothing.the hospital simply won't do more.the private gastro we saw did nothing.
We march on but we all acknowledge that there is unlikely to be a happy ending.i have fought the good fight but I cannot see any way forward.
We enjoy everything we can and until something occurs to me to change this that is all I can do.

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Sotired42
Torie

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Reply with quote  #1091 
Thanks for the update, SoTired.  I've been wondering how you were getting on.

No rest for the weary, in the Sotired household, I see.  Ugh.  This always calls for hero's work, but even so you have been dealt a whopping share.
 
I admire you tremendously for soldiering on relentlessly, no matter what.  You are such a great role model for your little flock. I wish I were close enough to lend a hand - you surely deserve one.

Hang in there.  xx

-Torie

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

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Reply with quote  #1092 
Sotired,
You have done everything you possibly can and more....
I hope you get some down time for you, I wish you peace in your heart.
xxxxxxxxxx

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
eternalhope

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Reply with quote  #1093 
Sotired- hang in there. Thinking about you. You are a hero.
Kali

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Reply with quote  #1094 
Hi Sotired,

Hang in there, and thanks for the update. It is wonderful that your daughter has been able to finish her course and you and your h. should be proud. Will she be coming home now?

Quote:
she is really struggling with keeping food down which makes her potassium go low which makes her muscles ache.she is so very tired.neither the doctor or the hospital will move her from an NG tube to a gj tube and now I don't know what to do. 


I'm wondering if the dr. your d. saw had any advice about any foods which could be easiest for her to eat?
Is she on any medications to help with the stomach motility?

Or have you and d. had a consult with a nutritionist who knows about gastroparesis and could suggest something? It sounds as though you feel like you are stuck and want to do something differently now. And I'm sure you will figure it out, you have done an amazing job getting your d. to where she is now.

Have you tried giving her the most easily digestible foods, things like mashed bananas in yoghurt, or pureed oatmeal with a little bit of honey or brown sugar, or a vegetable soup with pureed potatoes and carrots in a veggie broth or soft mango sorbet? If she can keep the tube feed down then perhaps she can also keep pureed foods which are almost liquids down as well? And if she chews anything she eats really really well before swallowing it her stomach will also have less to do. Has she tried eating small portions...multiple times a day? If she then remains upright after eating, perhaps that might help as well? Perhaps you and she have tried all of these things already but I just thought I would ask. Is she on any liquid vitamins? 

Here is a book which came out recently which looks interesting:

https://www.amazon.com/Gastroparesis-Healing-Diet-Promoting-Reducing/dp/1612436455

Sotired I know you will find a way to help your daughter.

Warmly,

Kali



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Food=Love
Trytrytry

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Reply with quote  #1095 
I was wondering how d was travelling.
Have you been pushing for a NJ tube or a jejunostomy? I remember that you said that she has to have her Ng tube changed intermittently. I have heard recently that many people have NJ tubes can be passed the same as an NG but the tube is different, longer, has a weighted tip, or protrusions - there are a number of varieties, and a few different methods of insertion that are similar to Ng placement. Sometimes they are done under X-ray guidance etc but it doesn't need a procedure like a scope to insert. But I guess it depends on the hospitals protocol regarding how they are inserted in your facility, but they can be inserted without a scope, and similar to a Ng tube
Would you/d be able to convince the dr to ask for insertion of an NJ instead of a Ng? I would be very hesitant of having a g tube inserted unless the Ng/NJ tube shows that it is successful - ie suitable weight gain. Trying an NJ is probably the best next step I would try for. And if that was successful then a dr may consider a j tube,

If I remember correctly you have said that d needs a g tube - don't know if that is your opinion or a medical drs, However I can see why the drs may be reluctant. G tubes need to be cared for etc and if there is a history of self harm, they may consider it high risk. Also, if having a Ng had been very successful, meaning your d having great improvement in her issues and has a good weight gain. Given how invasive a g tube is, i wouldn't want a hole put through me unless the Ng has been greatly successful and it doesn't sound like it is.
My d has worked in professional jobs with Ng tubes and ports with IV infusions running whilst at work, no one cares about her tube, and this has been her experience with the public, she was initially apprehensive and avoided going outside, she found that people looked, and toddlers would say something cute and get in trouble with their parents but she was treated as normal, or even given better treatment like people standing to give her a seat on the bus.

Another question - what pain does your d have? You can always see a different GI dr privately and see what they are willing to do. I would be asking for an NJ trial. When I have needed something out of the normal, I find that younger drs can be more likely to try things, especially something benign such as an NJ tube. But not always. You can keep seeing private gastro drs and hope you eventually find a helpful one. I also think that maybe going to a different hospital to see a private gastro and don't give them lots of info so they can take a history and make decisions without any preconceived ideas or judgements, don't hide the history of ED but you want help for current gastro symptoms and, and if I remember you haven't had much gastro tests?

How does she vomit do much without bringing her tube up, that was always a problem for us- another reason for an NJ, decreased risk of tube movement when vomiting

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I want a realistic dr and team, not someone who says what I want to hear and not a 'touchy feely nice' dr that doesn't have success.
scared_and_exhausted

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Reply with quote  #1096 
Oh Sotired I'm so very sorry to hear about ED D, but very glad about the other kids!
I'm sure you've done all the research you can, but have you considered Gastric Electric Stimulation? The Drs may be more open to a less 'aftercare demanding' treatment...
http://www.aboutgastroparesis.org/procedures-surgery.html
Just a thought!
deenl

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Reply with quote  #1097 
Sotired,

Thanks for the update. So sorry that it is not 100% positive - if anyone deserves a happy ever after then it's you guys. But it is certainly a '1000 x better than if you had not pushed so hard' ever after.

And there is hope for the future. My brother had to use crutches for 10 years after an accident and doctors expected that it would be for life. But the human body does have wonderful healing powers (eventually [rolleyes]) and he gradually got better and now walks and runs just fine.

Fingers crossed that the right medical care crosses your path or that a tincture of time brings further healing. 

Many thanks for the many, many replies you posted supporting me. 

Warm wishes,

D

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Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid. Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. 

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. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )

Mamaroo

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Reply with quote  #1098 
Hi Sotired, I don't have any advice, just sending you hugs from across the Tasman Sea 🤗🤗🤗
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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for a year and WR at age 11. Challenging fear foods now.
Sotired

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Reply with quote  #1099 
Hi everyone,
I wanted to take a few days and re read the replies that you all so thoughtfully send to me so I can at least try to get my reply straight.
My d is on 9 different medications that allhelp withthe different aspects of her poor stomach motility.she is on pain relief as one of those 9 meds and it works pretty well.
She has from birth been a very hard child to feed with any foods she does not like-so I cannot influence her diet much.having said that,she mostly eats mashed potato with a sprinkle of cheese on top,or small roasted potatos,or oven fries...lots of potatoes because it's her most successful food.she eats small portions,several times a day.she has packet tomato soup,sometimes bread.lollies.
That's really interesting about the different tubes but I must confess I have stopped fighting for now for her to have a different one of any description.we are just counting our blessings that the hospital hasn't tried to take the Ng one away.
I read up on the electro stimulation but I think that it hasn't been proven effective yet and I'm not sure it's available in nz.
If I had energy I would probably push for nj but in the end someone in the medical profession has to support that decision and I haven't found that support,though I ask every doctor that she sees if I see them too.
She vomits her tube up but just puts it back down herself unless she is at the hospital and then they replace it.
We don't have the option of a different hospital as if we went to a different one they would refuse to treat her because she has a local one to go to.its how the system is set up here.
We had a lovely outing today and now she has a friend staying who has her own gut issues so understands how things are for d.its lovely to hear them giggling away .
Everyone is so needy at my house that it's exhausting.so I just keep trying to sort things out a little bit at a time,whilst still grieving some things that I cannot fix,that I cannot change, for all of them.
Accepting that my will alone is not enough is hard for me.being tough minded is harder than all of us here are given credit for.
It all breaks
From night
To dawn.
From bone
To dust.
It all breaks in the end
Everything breaks down
From strength
Into weakness
And love
Into pain.

But hold on in the darkness
Mend every crack
Remember,
It breaks to rebuild
To be stronger than that
Soldered together by pain
Risen from dust.
Reborn to strength.
Only by Love.

Everything breaks
From night into dawn
No matter the darkness
Light is always reborn.

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Sotired42
melstevUK

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Reply with quote  #1100 
Sotired,

I am just so sorry for the never-ending demands placed on you.  You have been super-heroic in the way you have got your ed d to this stage - I just wish that someone could tell you that she will definitely improve in time.  I cannot even imagine the courage required to be sick and then put your own ng tube back in - amazing that she can do this.  I am also sad for yours and h's own health problems.
Why some people get more than there fair share of hurdles and difficulties to face in life is something I don't personally believe any one person or religion can explain.  You have had one hell of a journey and one hell of a fight.

All I can wish for you is that the load at some stage gets easier and that the moments of happiness increase.

Big hugs - you know how admired you are by this community.  I just wish we could do more than sympathise.  


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Believe you can and you're halfway there.
Theodore Roosevelt.
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