amber rahim

Chronic illness: the parts we don't talk about


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“I want to be normal”

For so long, F has consumed very little food by eating. Apart from the nausea, the extremely sensitive gag reflex and the throat spasm affecting her ability swallow, there has been another factor: her teeny tiny bites.

No matter how small a piece of food you give her, she will always find a way to pick a bit off and eat that. Crumbs. Her bites have been crumb size.

With increasing regularity she has been taking bigger bites, always showing us “look at the size of this!” and then putting it in her mouth.

In the last couple of months she has actually been putting enough food in her mouth in one go to fill her mouth; enough to puff out her cheeks even. It takes effort. Sometimes you can see that she is gagging and with the incredible control that she has, she stops herself from vomiting. She is proud of herself for setting a challenge and then making it. We cheer her on.

I never thought much about it (I only drive myself crazy trying to figure out how I can make her eat).

It’s part of her journey of learning to eat. It’s the hard way because it is conscious. She actually thinks about how to move food around her mouth, how to move it to the back so she can swallow. Next time you take a bite, pay attention. Do you even know how you use your mouth to eat? Well, unless you are a speech therapist, you probably don’t know. None of us do. We learn to eat before the age of two and we are not aware of what’s going on. Food goes in, we chew, we swallow. End of story.

For late eaters like F, who started eating much later than that, it’s a conscious process. They are aware about what’s going on when food goes in the mouth. Quite frankly, it’s quite a gross process.

So as parents, we encourage eating (I wrote about how we do that here and here) and allow her to set her own pace. If she wants to take teeny tiny bites, then ok. It will just take longer.

Then something happened and my heart paused, then beat again. Tears burned at the back of my eyes.

Just recently she told J why she does this. And this is what she said:

“I want to be able to eat like you guys do, you know, normally”.

 

We forget how much children are aware of. They don’t talk about how they feel different but they do feel it. They don’t say that they feel excluded, left out from something that everyone else can do (like eating). But they do feel it.

We should not take silence as “everything is ok”. If we listen carefully we can find out so much of what is going on in their lives.


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How can pink donuts be my downfall?

I have written a lot about how I have dealt with never ending sickness extreme eating problems (i.e. nil by mouth for 5 years).

I think I have written about it with patience, become a little bit wiser through the process.

Well, today I do not feel even remotely wise or patient. Today sucks.

You see, little sisters copy big sisters. In everything. All those quirky eating/non eating habits that I was able to deal with in F, who has the illness and the multitude of reasons why she does that weird stuff, well, they just suck when S does them.

Take donuts. Until recently, F didn’t eat any kind of bread or bread stuff. Yet she was interested in the little sprinkles on pink sprinked donuts.  So what did she do? Pick off the sprinkles.

S loves bread. I mean really loves it (except crusts but hey, she’s a kid). How does she eat donuts? She picks of the sprinkles (and icing because she’s a sugar junky).

Now I don’t want to force either of my kids to eat junky donuts, I really don’t. But I want to shout “just eat the effing donut!”  Sometimes I feel trapped in this circle of weirdness with food and only one of them has the illness!

Can’t catch a break. You’d think it would be easier with the “healthy one”.

Sigh.image

Ok, whingeing session over.

 


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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.