Ladies Camera Club

12 Feb 2010

How do we fatten her up?

Ellie is on a food supplement called Calogen and has been for a few months now (except a 4 week break because of a prescription mix up). At first she responded to it well putting 2lbs on in a week; which, believe me, is a lot for her as she barely puts 6lbs on in a year.

But just as we held out for this miracle weight gain did her body become "used" to it and now her weight has stabilised although if I'm truthful, she lost that 2lbs and is back on an even keel. She is still dangerously underweight and as much as we pile on the calories, we still have to balance the nutrition out. Meaning I have to top her up with veggies and fruit even though they are practically negative calories.

For breakfast Ellie has a bacon sandwich and a cup of coffee. I admit the caffeine works, it wakes her up and she loves it.
Mid morning she has mini sausages or a mini pork pie.
At lunch she has chicken and pasta with fruit or veg
When she gets in from school she has one or two packs of crisps or a small sandwich with carrot or pepper sticks plus a glass of whole milk with Calogen.For her tea she usually has a meat and gravy dish with pasta and sweetcorn, carrots or brocolli.
She then has her Calogen before bed with a nestle chcolate straw in it with a 300m glass of whole milk.
She has the same calories every. Single. Day.
And she isn't gaining an ounce.
We can't possible shove any more food into her, we tried it. It made her baulk and gag. You or I as adults could live off what she eats. Truly. And add that she doesn't burn off the calories because she is physically unable to move like you or I, so where do those bloody calories go? My Doctor told me that she burns off more calories by sitting still - is that a blatant fob off? Im v. v. v. suspish of him.

And I do worry that the doctors think I am not feeding her because they look at you that way. You know, with a tilted head and piercing eyes. They ask about her feeding pattern and you tell them about every morsel she has eaten and they look at you as if you made it up on the spot. They even ask Ellie what she has eaten and they are scanning my face and her face and as she looks at me for re-assurance I can help but feel paranoid that they are eyeing me up and thinking "you are clearly starving her". But you only have to look at her nails, her skin and hair to know she is well nourished. Her nails are beautiful, her eyes have a lustrous glaze and her skin is so peachy. Granted, her physical frame is not pretty to look at because its so skeletal and faril and twisted and crooked and stooped. I'm not disgusted by it, mind, because we are used to it, really. She still has a heart and soul, just like you or I. I think people should stop and look beyond her physical presence because that beautiful heart of hers, which you can see beating through her ribs because she is so thin, would melt huge rocks and boulders.

Ive noticed recently her scoliosis is arching more and that she is twitching a lot. By that I mean body jerks. Now, she has always been classed a fidget by her school teachers but its not her fault. She jerks and twitches and can't sit perfectly still. We don't know why. She just twitches. A lot. Im used to it but at the moment its more prominent.

Ive also noticed her stooping more when she walks. But I only seem to notice when other people stare at her open jawed like they did tonight in Ikea. I swear down this woman stood there with her jaw wide open as Ellie walked by. I mean, if Ellie had of been naked in the store and lighting a cigarette I could have justified the gawp. But no, this woman was so brazen. I looked at the woman but not in a mean way and I kindly said "Its not infectious, you wont catch it".

Perhaps this is why we don't go out so much, maybe its the reason why but I hadn't realised it until just now. And not because we are ashamed but because its hard living in this perfect world when perfection doesn't meet the judges eye. And also, whats on my mind is that the Doctors told me last year that if she hasn't put on a satisfactory amount of weight on by June, she has to have a gastro tube fitted. And I'm totally against it. Because its been evident for 14 years that Ellie has had weight issues (failure to thrive) but because she has hit high hormone and growth levels, her weight suddenly has become an important issue for them. Had they not listened to me beg and plead the 13 years prior to that about her weight? I just feel she is being punished for their lack of duty of care.

Ooooh I'm in a right pickle about it. And I don't mean to be down about it neither. Its just affected me today and I wanted to blurt it out.

And I feel sooooooooo much better that I have :)

Have a gorgeous friday xx


Jan C. said...

Why do they always call it "failure to thrive"? If Ellie's made it for 14 years, that doesn't sound like a failure at all, but quite a decent success!

I do know what you mean about feeling like people eye you suspiciously. I have always bruised at the bat of an eyelash, and so do some of my kids. Once when I took my oldest daughter to the doctor for a checkup (she was about 5), her legs were all bruised up, and the doctor (who had known me through 2 older children) looked at me funny. Thank God it was summer and I could point to my own bruised up legs and say, "she takes after her mom." We laughed it off, but for a moment there, I thought she was going to set social services on me!

Anonymous said...

Oh Kirsty! Can only begin to imagine how you are feeling... My youngest has Aspergers and doesn't realise that he shouldn't say some things out loud (hehehe - it IS funny sometimes) but I don't think that comes anywhere close to how you and Ellie must be feeling. Sending ((((hugs)))). Don't let the bu**ers get to you. :-D HeyJude!xx

Kerry said...

Hugs honey xx and to Ellie too xx

People can be very cruel at times. I've got to the point now where I just ignore the stares when my 2 do weird stuff in public.

Every week for years we have seen the same couple with their daughter in the supermarket and she always has face paint on. Now she is a teenager she looks different to the other kids as obviously orange permatan and heavy black eyeliner is the favoured choice amongst most teenage girls not a face painted like a clown. Every week somebody stares at her and she politely turns around and says I have autism, you can't catch it so stop staring. Makes me want to give her a big cuddle everytime she does it because I know how she must feel.

Caron Kerr said...

Hi Kirsty. Don't worry about the gastric tube - if Ellie is eating then putting the food straight into her stomach will make NO difference at all. It about how she absorbs the food and uses the calories. I'm not suggesting she has cystic fibrosis ( obviously she hasn't) but they have the same problem - they eat loads of high calorie foods and mums try really hard to get enough calories in them, but they just don't put on weight. Maybe some of the CS supper groups could help with the diet thing.
Also - I know we all think thee I'd an ideal weight, but instead of concentrating on her weight, ask the doctors what it I'd about being underweight that is a problem - and maybe tackle that - apart from being thin - is it a cruelly causing a health problem being underweight - as you say - if she is otherwise nutritionally healthy ( blod tests show nutrition is fine) and she had enough energy - then does the actual weight matter. It might sort itself out once she is through the teenage years.

Hope that helps - it just seems strange for the diva tone fixated about her weight unless it is having other consequences.
And on another note - don't you dare let those docs make you feel guilty - you are a fantastic mum and you have done do much more for Ellie than they ever will.

ps see you at scrap a mia
Caron xxxxx

Caron said...

Oops sorry about the spelling in my post - predictive text gone mad - cruelly should be really ! Hope you can work out the rest :-)

Pat said...

Some people are so rude!!!! Ellie's such a beautiful child. Don't know what to suggest about gaining weight. Not the same thing I know, but my elderly Mum is on Fortisips, and she has gained some. But from your posts it's obvious you have tried everything. No Mum could do more than you do so please don't beat yourself up about it. Sounds like Ellie is the way Ellie should be, totally unique xx

Paul B said...

You blurt away Kirst :) Sounds like you're doing everything you can and more. Ellie has a loving home with wonderful, caring parents. Sorry to hear that her symptoms are aggravated more at the moment. Give her a hug from me - tell her I say Hi :)Now take a deep breathe, release slowly and repeat. It's a new day. xx

Katty Bell said...

((Big Hugs))
It's perfectly OK to vent & have a rant, you NEED to do it. I think docs are only trained to treat the problems that they can 'see' and sadly, here in the UK diagnosing an illness is'nt high on the agenda if nothing concrete is shown through bloods/tests etc. Thinking of you all... I personally would have a big prob with the gastric tube, too :O
Keep your chin up and voice your concerns, any good doc should take them on board and try to come to a solution that is best for Ellie.
Try not to let ignorant people get you down, they know nothing about you & Ellie, so feel proud... she is one gorgeous young girlie :)

Rachel said...

you said yourself she constantly moves and twitches and can't sit still so she will burn more calories. Sorry to say Caffeine just ups the anti as its a stimulant so helps her burn more so if you can have smaller cups??? Have you looked at the GI index for slow burn foods as well as the fast burn stuff like pasta. Just trying to think of ideas for you :-) Growing takes energy and she is at a key stage so keep it up.
Thinking of you

Kate said...
This comment has been removed by the author.
Helsbells said...

Hi Kirsty,
Sounds like an awful predicament, and you are doing an amazing job.
This world only allows perfection, anything out of a very narrow margin is looked at as being wrong, too fat, too thin, too tall, too short, too white, too black, One day everyone in the media will look the same!
You keep taking her out, people need to see differance, the more they see people who are differant, the more they will accept it. One person can't change the world, but maybe you changed the mind of that one woman who you told "you won't catch it".
Keep your chin up.

Kate said...

Sorry, my comments sounded just too trivial for the situation. Thinking of you. ** Kate **

Michelle said...

Don't normally comment, but have to jump in as I have a NG tube fed little girl who is nearly 2. She has failed to thrive from birth and has severe food issues. Your Ellie has no problem eating, so the tube will be to fill her up at night - but I would resist it tooth and nail as it will effect her eating during the day.... Knock on effect not what you want...

Our little one is like a whippet, skinny minnie, and only fits clothes for 12 month kids. People stare, and ask why she has a tube fitted, and we tell them but it draws attention. Hugs and kindred thougths! Michelle

hello gorgeous said...

hey gorgeous, well firstly here's a great BIG bear hug...sometimes it's what you need to help melt some of those worries away, plus it feels SO nice to get a hug...I'm ALL for hugs!

Secondly, you're right to be suspish of that Dr (if he even is a real Dr?) I sit around all day and I don't burn ANY calories!!!!

It must be hard hon knowing you are doing everything you possibly can for ellie and still you have frustrations and questions and worries and then the added nosey-ness of people who don't know what you are going through and what ellie has to cope with....sometimes people are curious and have questions - which they don't voice - but leads to that "gawpy look" expression (not a lot are like that mind you!). You mustn't let it get to you, rise above their ignorance, we are all unique in our own ways it's just difficult for some to get to grips with it.

We put on weight and it seems like no effort at all but when you NEED it to happen why is it so difficult? Grrr! Think you might have to introduce your fetish of cake to ellie and take it to the next level ;oO

If your heart says no to a gastric tube...then don't do it! She IS eating and if all it does is feed her overnight (according to the lady above) why do it, I mean WHO eats through the night???

So I'm gonna give you ANOTHER great big bear hug (only this one will last a little longer - you know the one's where you think that's long enough and then it goes on a bit and you suddenly realise it's what you need and you just melt into it)and let you know YOU ARE DOING EVERYTHING POSSIBLE for ellie and will do whatever it takes to make her happy and healthy and enjoy life to the max!

love and hugs

hello gorgeous xxx

Bettyann said...

Big (((((Hugs)))) coming to you through the wires...I can't believe the amount of punishment you take from the Dr' do what you think is best for your childs...too bad they don't have a health advocate for you and your family..I'll come over and set them right !!!! ..take care and vent all you like it's your blog..

Anonymous said...

Hi Kirsty,
Never replied to a blog post ever but felt so moved by yours! Chin up sweetie.
There are some rude people in the world (like that woman in Ikea) but thankfully they are in the minority. You carry on taking pride in your beautiful daughter and don't let other b***ers get you down!
And as for that doctor - I hope you stand your ground over the gastric tube issue and seek several other opinions on the subject. Ellie is obviously thriving, although physically it doesn't seem to show, so stand by what you believe with those so-called 'professionals'.
Finally a huge hug to both you and Ellie.
Take care,
Norma xxxx

Shirley Davis said...

The number of responses shows how well-thought of you are, Kirsty, which in itself is a boost to your morale, I hope.

It is hard to live with permanent health-challenges. I have MS and for a large number of people that means Moaners' Syndrome. However, I remain steadfast in my belief that NO ONE knows what it is like to walk in MY shoes (or sit in MY wheelchair).

Ellie did not ask to have such health-challenges and you did not make her like it. You have been her ears and eyes, her spokesperson for her whole life. Now the baton is being passed to her and she will speak for herself. Ask her to keep her own food diary for a while, and you continue to keep yours, of course. It will be interesting to see what she writes and will, no doubt, show she is eating well.

If the tube becomes a burning issue, before Ellie gives her permission, I hope she will be allowed to speak to others who have one. And I hope her NO if it is uttered will be heard and held as Ellie's decision not yours.

I suppose what I am saying is: when does Ellie's future become her domain and leave yours? Caring for someone who is making her own decisions will be different - it may even be harder in one way, but easier in many others. It's a gear shift, a new template for living that comes with EVERY teenager, doesn't it?

As for doctors and consultants, yes, they do have a way of looking at mothers BUT they will HAVE to respect the wishes of Ellie, the individual.

Lots of love for the weekend.

Sam said...

Hi Kristy, Big Hug for Ellie. I wish people would just F---- off when I hear stories like the lady at Ikea. Makes my blood boil. My best wishes and prayers are with you and Ellie! Keri (a.k.a. Sam)

Elisa said...

Good luck with the Calogen, my son took it for about a year or so. I am not sure if it helped him gain weight, but at least I knew he was getting enough calories. in his case, he simply didn't eat enough, so at least we knew why he wasn't putting on any weight.

She's definely eating enough and well. It is a puzzle, isn't it?

Wish Ellie best of luck, she's a great girl!

Marie said...

{{{HUGS}}} Kirsty. You have to wonder if there something about how her body is processing her calories - clearly the little bligthers are sticking where they're supposed to (which of course is the complete opposite of what happens when you want them not to stick!!).

I really hope you can avoid the gastrotube hun. She and you have enough to contend with.

Grrr to the stupid Ikea woman. Some people are just so bloody rude (and stupid!) drives me bonkers.

{{{HUGSSS}}} again to both you and Miss Belle. She really is such and adorable and polite young lady. It saddens my heart she has so much to deal with.


Savannah Brentnall said...

Is there any way to incorporate nuts and oils into her diet? Flax seed oil, rice bran oil--all healthy and full of calories. Also, a handful of almonds, cashews, walnuts, etc would add a lot of calories without being unhealthy. Just a thought.

Anonymous said...

Chin up,Northern Chick-Im sure most of your blog-stalkers would kill(as I would) for the chance to see your CurlyGirl in the flesh,check out those ruby reds and marvel at the georgeousness that are her perfect hands and nails and soo beautiful hair...
I remember reading an article years ago about a girl who had CF and she ate xmas pudding every day of her life,EXCEPT xmas day,just to get enough calories in her poor body to cope with the pummelling her mum had to give her 4 times a day to clear her lungs..."so,youre not beating your child yet-thats a plus....." *she said in a faux American teenager accent*
Love to the CurlyGirl
Lulubelle xxxxxxxxxxxxxxx

*reyanna klein* said...

Oh, goodness, Kirsty! I'm so sorry!!! That horrid woman! Ugh! I would have been like, "Keep on walkin', Junior! This kid has more strength and class than you have in your tiny finger!" Pfff.


Anywho... done with my rant. Bless Ellie's little heart. Have you tried Muscle Milk? When i can't get enough calories (which, you know... is often), I drink some of those. I wonder if you even have it in the UK.

And Sylvester Stallone said the best diet to gain weight is pancakes and milkshakes! ;-) LOL.

Well, I think she's just beautiful and wonderful, and I've never even met her. I do hope she's getting some relief soon. I'll keep you all in my prayers.

Hugs! xoxo

Jo E said...

Big Hugs Kirsty. You rant away my love! There's a whole community out here that are on your side. Xxxx

Rosie (Freycob) said...

Ellie truly is a gorgeously warm hearted girl! She was such a treasure to Freya and I when we visited in December (you were an old bag mind! HAHA!)

I wish you could have given Ikea hag the come back "yes please do stare at my gorgeous daughter, she's beautiful isn't she? She may be very slim, but she's the kindest, most unassuming person you'll ever meet and you will always be a twisted old bag, now get back on your broomstick and F*** off!"

Tell Ellie her the reindeer still lives on in the world of Freycob, a bit deflated again, but nevertheless he's just a bit wrinkly like you and I!!! ;-) xxx

Sue said...

No wonderful advise sorry just wanted to add my empathy and give you ((((((((((((((hugs))))))))))))))
My three have all sorts of learning/medical probs nothing worse than seeing them struggle in anyway.
The best you can do is give love and you do in bucket fulls xxxxxxxxxxxxxxxxx

Anonymous said...

Hey Kirsty . . . I think all the above have said what I feel about the Ikea woman. You handled it so very well . . . far far better than slapping her which is what I think she deserved!

Re the scoliosis. Have you though about doing any research on Callan Pinckney, (I mention her before as she has this and went on to develop Callanetics).

Re the food. Sod those charts! My kids were always outside the "norm", (under the 10th percentile . . . someone HAS to be), and yet ate really really well.

You are a super mum :-) And Ellie is a wonderful girl :-)

Have you thought about getting an opinion from a dietician? Personally I can't see how Ellie can eat any more BUT he/she may have some tips that will help. Just a thought.

Love being in touch on facebook. Let's meet up soon. Take care.

Sue Nic

Anonymous said...

Hi Kirsty, my eldest has had no end of problems with her weight and we tried all the suplements etc, the only thing that really helped was to make the food she was taking in very calorie dense. so put lots of butter on her bacon sarnie, so she dosent have to eat more. adding raw egg to potatoe as you mash it works well too. a good dietiation should be able to give you lots of tips to increase calories in the food she eats without adding extra food. Take care and you know your daughter better than anyone else ever could so do what you feel is right love Anna

Jules said...

I don't know you personally Kirsty but I have been hopping on your blog for sometime now. This is my first comment... people are ignorant and professionals are not infallible. Teenage years are renowned to be the "puppy fat" burning years and well if you haven't got any to burn... Well I'm not going to waffle on like I know what you're going through because I don't but it is obvious you are besotted with your gorgeous girl! You're a champion for your daughter...WAY TO GO!

Julia O'Gara said...
Kirsty, just reading about your daughter, had u thought she might have tourettes, many peoply think its only about swearing or shouting absentities at odd times but it can be about movement ticks only. A friend's daugther was diagnosed in the last 18 months and she's now 16, and she's never sat still, but can't stand anyone to swear. I may be way off base but it's a thought. Plus my son can eat and eat but doesn't put on weight, at nearly 16 he wear 12-13 trousers, if he grows any taller we'll have problems because older trousers slide down his hips. You are doing the best you can. As long as your daughter is as happy as she can be then you are doing the right thing.
Tadke care
Julia O'Gara

Paula - Buenos Aires said...

Elle´s menu sounds yummy. :)
{big hugs for you}

nailgirl said...

kirsty, just wanted to say that you can rant all you want! it is your right as a mother! although i've never met you, i can just tell from having followed your blog that you are one of the sweetest, most capable, caring, loving mothers that ellie could have! rude people ought to be ashamed of themselves, what with staring at ellie! i just dont understand some people at all. it makes me mad just to read about it. anyway i always think of you and still pop in to see what you and your lovely family are up to. really miss you over at studio calico! miss your beautiful layouts as well. anyway, you take care of yourself and that amazing daughter of yours and as always, you both are in my prayers! hope ellie does well with everything! love to all....

Anonymous said...

Hello! there are loads of extra supplements and as your daughter is in this situ then her dietitian would be prescribing those for her. She would have all of the things she is having plus several of the drinks which are 300+ calories per bottle! As for not going out because of a perfect world...where on earth do you go that is so perfect? You and your daughter are more special and more valued in society than the so say perfect ponsey ones will ever be!!!!!!! We can all see people who are very ill, disabled, unable to stand unaided, unable to speak, move apart from a flick of a switch to opertae a chair or a machine to make them speak with anothers voice, unable to ever have any food or fluids orally and have then all through a vein like you would in hospital but they live in the community like your daughter and you and your husband. There are people who are dying in every town and city and they can and do go out. They might be on huge levels of opiate based medication but they do not wear a label saying poor me I am ill. There are people with stoma bags, catheters, tubes to assist their breathing, suction machines on the back of their wheelchairs etc etc etc. There are people with conditions where they twitch and shake and fit and they all go out too. Yes the ignorant will need to grow up but there are millions with far far more obvious disablities who are attached to machines for hours a day and they go out too!! So what if somebody and your daughter need to adapt to that and live with what you have and not yearn for the so say perfect world as we all have something to handle. Nobody is perfect ....nobody not even those with the kids who are so say the best, most polite, most intelligent child in their school year with parents who drip on about them and say how proud they are of the fact they are in the best school and the top of every set.....even they have problems and you could teach them a millions things every day for the rest of your life and they would still have problems as you and your daughter are as if not more special than the perfect ones will ever be!!!

karennarelle said...

grrrr, doctors.i have 2 young children that are considered underweight. I feel for you and i hope it gets sorted.