amber rahim

Chronic illness: the parts we don't talk about


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8 ways to get your kids to eat: No. 8 in action

Ok, so after my impression of Homer Simpson’s “angry dad” last week I was able to chill out and get back to the positive psychology approach to getting kids to eat.

This week I practiced No. 8 Agreeing together what the rules are going to be.  The heart of this is control.  We gave her space and on Monday she asked if we could barbecue. It’s winter in Amsterdam and it was about 10C so of course we said yes.  Hubs bought some meat (ok, this is not in line with “rule 1” but we didn’t have meat for a BBQ in the house.  It’s winter!).  The kids went outside with Hubs to make a fire and cook. We ate inside.

This is what she ate:

Butterfly lamb chop

butterfly-chops-redcurrant-glaze

Chicken drumstick (she got through half a drumstick)

drumsticks

Green beans

green_beans

Sauces: piri piri, mayo and ketchup. Lots of it. (no photos, I’m not advertising here).

So how is it that last week eating was a problem and on Monday F had a feast?

Was she just being fussy? No.

Bartters is a rare illness and there is limited understanding of what it is actually like to live with it. Over the years I have talked to adults with it or with Gitlemans and I have come to understand a few things.

Your electrolytes go out of whack at any given moment: your potassium levels can drop when you get stressed, when you are active, when you play a lot, when you get hot … basically, when you do anything, your levels can drop. When this happens, you are dehydrated. You feel nauseous and don’t want to eat.

Everything you do uses potassium. It makes your muscles work. When you don’t have enough, your muscles don’t work as well.  So sometimes even swallowing is difficult for F. There was a long time (more than 12 months) where she could chew the food but couldn’t swallow it. So you might want to eat but you can’t.

All those meds you take make you feel like crap, so you don’t want to eat.

Everyday there can be a number of reasons why you don’t want to eat or can’t.  That’s why after all these years we still rely on medical nutrition (feeding tube people have you tried Peptisorb by Nutricia?  It’s great.  Here I will advertise.  This dramatically improved quality of life for F and for us).

So Monday was a beautiful day. Her enjoyment of the juicy lamb was clear (it’s been months since she ate red meat) and she chatted all the way through about how delicious everything was.

You can’t imagine my joy at hearing her groan “ohh I’m full”.

I’m just going to savour this memory and stop right here.


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8 ways to get your kid to eat & 1 thing not to do

My daughter has an eating problem: she doesn’t.

The cause is related to her illness and it is reinforced by physical and psychological side effects of this chronic illness.

Not just a fussy eater but literally for years F hasn’t been able to consume more than about 20 kcal a day through eating or drinking, with sometimes months going by without food passing her lips.

This is changing, firstly with Haptotherapy and and now we have a program to encourage her eating which is based on creating opportunities and rewarding her with recognition when she eats.  We do nothing when she doesn’t eat, except to say “ok, maybe next time”.

However, this last week I’ve been getting pissed off. Really pissed off. I make things I know she likes and she says “no”. I ask what she wants and she replies “I don’t know”.  Sounds like a lot of kids, I know, but I lost it.

I got annoyed and told her I had had enough. We had words. We sat apart, brooding.

She saw my tears and she hugged me. Yes it should have been me that moved first but sometimes our children are just better people than we are.

There’s a fine line between giving space to let them feel free and encouraged to eat and being totally I ineffective letting them just mess about.  Sometimes I get lost and don’t know where I am in relation to that line. That’s what this last week was about. 

When I’m on the right side of the line, it’s great. Positive psychology to encourage her to eat really does work; her range has expanded greatly and quicker than we ever expected (hey, in our world, getting her to put a whole teaspoon of food in her mouth in one go after 6 years is speedy gonzales fast).  And it’s without arguments over food (well apart from the one I mentioned earlier but that was my fault).  There is no power struggle.  Repeat, no power struggle.

This is what it looks like:

1.  We are open to her needs without being slaves to them.  For example, we try to have stuff she actually eats in the house.  If we have run out we put it on the list for the next time we go shopping.  Running out is not the end of the world for either of us.

2.  Get her involved in cooking.  She loves to chop stuff and sometimes she just uses her hands (mushrooms are super easy at any age).  I try to keep something for her to cut and if I can’t do that, then she can put what I have cut up in a bowl before we transfer it to the pan.  It is not really necessary but it gives her something to do (and I look like one of those TV chefs from the 80’s who has stuff ready in little dishes.  The irony or my scornful question “who cooks like that?”)

3.  Let her play with food.  There is a reason babies and toddlers shove their hands in their food and smooth it around.  They are trying to figure out what it is and what it feels like before they bring it into contact with a very sensitive part of their bodies – their mouths.  F totally skipped that activity as a baby (it made her projectile vomit to see a banana let alone touch it) and it only kicked in when she was about 3 or 4 years old.  So we let her use her hands, to just touch and explore and to eat.  If this is something she needs to do before she can take the next step of taking a nibble, then it’s fine by me. (Restaurant behaviour is a bit different and she is ok with that, she knows why).

4.  Patience. Patience. Patience. And a kind voice.

5.  Give time for the choice to be made.  I start early, especially with dinner as that seems to take the longest. It goes like this:
Me: What do you want for dinner later?  we have X, Y, Z (hmm that’s a thought, maybe I should try alphabetti spaghetti.  Do they still make that?)
F: I don’t know
Me: ok, think about it or have a look in kitchen. I’m going to start cooking later
As time passes and dinner is getting made, we go through this process a couple more times, with the “deadline” for choice making getting closer.

6.  Seems like she can’t make a choice?  I just make something, put it on her plate.  She will either eat it or not.  Quite often she will – isn’t it great when others make the choice for you?  I mean, half of my conversations with my husband start with “what shall we have for dinner/lunch?” (hmm another date night is needed methinks).

7.  Involve her in the shopping: making the list, picking the stuff up in the shop, pressing ok on the pin machine (she loves this) and putting the shopping away when we get home.  Ok, that last one doesn’t happen very much but it’s on my wish list.

8.  Agreeing together with her what the rules are going to be.  Super duper important one here.  My agenda is to get her to eat. Her agenda is to eat, it’s just seasoned with a bit of control, wanting to choose and the occasional urge to just say no.

These all work.

But sometimes I just want to be listened to.  Not to discuss but to just say “here, eat this” and be obeyed.

I choose that word deliberately, obeyed.  It has nothing to do with eating really and is more about being tired.

Bringing up kids, who can think; make a plan; negotiate; consider the consequences of their actions; be creative, is hard work.  It demands the same things of us and sometimes, that leaves me tired and cranky.

So this last week the seed of doubt found it’s way into my mind.  It said “she’s just messing with me.  Am I stuck in the Princess and the Pea story here?”.  So I took the short cut, raised my voice and told her to “just eat!” It would be so much easier to have a robot that would just do what I say!  Sigh.  Needless to say, it didn’t work.

But a robot would not have given me a hug after seeing my tears. That affection came from the independent human being who can think for herself, who can make her own choices and who was moved to hug me, knowing that it would bring me comfort.

So what is the essence?

Our children are better people than we are

Positive psychology works

This week, F has been mostly eating sweetcorn.


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If the illness doesn’t get you, an arrogant doctor will (try)

I just want to preface this post with a statement: the majority of the doctors and health professionals I have met are good.  My daughter’s team are fantastic and are one of the main reasons I will never move away from Amsterdam (and maybe they don’t know this but they are not allowed to move house or change jobs either!)

This post is about that rare health care professional who leaves an impact, who just blows you away.  But not in a good way.  So here’s my story.

The first time that I ever felt defeated it was not because of the demands of the illness, it was because I was face to face with the most idiotic doctor that I have ever met.

At 14 months my daughter had her second operation; to place a PEG feeding tube.  A hole is cut through the  stomach to the outside and tube is inserted and held in place (by the plastic triangle you see in the picture).

PEG

The operation went well and a week later they removed the plaster that was placed underneath the white triangle (I only know what it is called in dutch, plaatje).  It all looked good, no infection so we went home.

At home I noticed that her clothes kept on getting wet.  At first I thought she had spilled something on herself but two clothes-changes later I realised that she was leaking.  It was like a magic trick: her clothes were dry, she drank from her bottle and abracadabra, her T-shirt was wet.  I did all the checks: triangle in place, not too loose; clamp was closed; no holes.  The PEG was ok but she was leaking directly from her stomach!  It is bad enough that her kidneys are leaky but now everything she drank just came straight out again in seconds!

Leaky bucket

How could we stop her dying from dehydration if nothing stayed in?  I know that this cartoon and these words don’t really go together but this illustrates what was happening (and I use humour to deal with almost everything).

I took her to hospital and she was admitted.  It was the weekend so we had to wait hours for the gastro specialist to come.  (A piece of advice – if you are going to get sick and go to the hospital, don’t do it at the weekend.  It’s like a ghost town).

Finally the gastro doctor came to see what this obviously crazy mother (me) was getting her knickers in a twist about.

I explained.  She looked at me like I was a moron and told me “they always leak a little bit in the beginning.  It’s normal.  The hole needs to close a bit and that takes a week or so”.

She wouldn’t listen to me; that is was a flood, not a drip.

She didn’t listen to my explanation about Bartters; that my daughters condition means life threatening dehydration and she can’t afford to “leak” for a week or so.

She patronised me some more and I cried.

She walked away.

I had no words.  I had been dismissed as if I was a panicky, neurotic mother who jumped at her own shadow.

We had survived 14 months of various calamities such as septicemia, frighteningly high fevers, gastritis, weeks in intensive care, non stop vomiting and I had stayed positive and pragmatic.  Now I felt helpless.  I knew that we were going to lose her.  Not because of the illness but because of arrogance and stupidity.

I was not going to let this happen!

I called the nurse and asked her to watch.  My daughter was sitting up and I gave her a drink.  The nurses eyes widened and her eyebrows shot up as my daughters clothes became drenched.  She looked at me with apology in her eyes and dashed off.

Investigations were done.  It turns out that they had cut the hole too big.  We came up with a plan: gauzes, regulate the rate of fluid with the feeding pump, only little sips for my thirsty baby.

It got resolved.  It often does.  But we need to be more than parents, more than carers.  We need to be crusaders, ready to withstand the lashes of disdain and condescension meted out by that special group of arrogant doctors who believe that just because we are parents, we know nothing.  It only takes one doctor like that to crush your spirit.

Most of the doctors at our hospital are great (please don’t ever develop your career and move on, stay here for us!) and my daughter was alright in the end.

But I will never forget the day when that doctor almost killed my baby because she was too arrogant to listen and too stupid to see.

So to all you good doctors and nurses out there I want to say thank you for listening.  We parents sometimes get in the way, ask a lot of questions, insist that you really do just check that again.  It’s our job.  Thank you for knowing that part of your job is to let us be heard.  We are a major part of the care team.


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Finding my daughter: the child behind the illness

In taking care of a child with a chronic illness something, seemingly insubstantial, is lost.

The worry

Will she be ok? Will she live a normal life?  Will she be happy?  Will she live?

The worry is clear, solid, like a monolith pressing on your heart.  It is substantial.

The work

Preparing and administering medicine, waking up multiple times at night not because they wake up, but because you need to give medicine, clean up vomit.  The extra washing from a baby that projectile vomits 12 times a day.

The work is heavy, the weight of it builds up and presses you down.  It is solid.

The learning

So how do you insert a nasal gastric tube into the stomach and not the lungs?  How do you get a pill into a baby using a syringe because you need to give it via a feeding tube?
Turning into a nurse and thinking “I never thought I would need to know how to do this” and secretly loving the fact that you know how to handle a syringe.

This you know.
These are real.
They take up time, freedom and energy.  This is a very real loss and you know it.

What caught me by surprise and was the greatest tragedy of my life, was looking at my 2 year old daughter and seeing a person for the first time.  There had been glimpses, moments, along the way where we connected as mother and daughter but it wasn’t until her condition was stable that I could relax and I actually saw her, a person.
Her life was less precarious, the stress was less, the work less intense, she was having good days, feeling good, laughing.  I had time to breathe and breathe deeply; to look and see this is my daughter, my baby.
Looking at her face light up with joy, the mischievous look in her eye, the brilliance of her spirit I wonder: how often have I not noticed?  How often was I too busy with the syringe, trying to keep vomit out of her hair or had turned away once the task was done?  How often have I looked at her and seen only the illness, not her?

This loss often goes unnoticed, and therefore seems insubstantial.  This is the greatest loss.  Losing the one you love when they are right there, with you, wanting to be seen.

I do see my daughter.  I can separate the attention I give her illness and the attention I give her.  She feels it too, although she never mentions it.  I can see it in her eyes.

However, I know that if I don’t do something that gives me energy, if I don’t recharge, have fun, laugh, cry, have time to myself; then I lose her.  I stop seeing.
The illness is always there and is demanding.  It screams for attention and gets it.  Uses up my energy until I am weary.
She doesn’t scream.

So I have learnt to look after myself.  I find a way to have fun, cry, let off steam.  Let someone else care for her, even if they won’t do it as well as I would.  I need it.  I take it.

Then I can see. 

So who is she?
Funny, smart, quick, shy, too hard on herself, cunning, determined, scared.  She is beauty, in all aspects.
She is a person.