Oct. 9th, 2017 06:21 pm
emma_in_dream: (steve)
Sometimes I think that we may have a few too many medical issues….

Last week we met with a new paed about Ruby and he went through the list he had summarised from her file. NF1, coeliac disease, late to walk, weak hands, and dust mite allergies.

I had no recollection of her being tested for dust mite allergies. Looking at my blank face he was all, so shall I assume no action has been taken to improve this severe allergy?

Me: I am so sorry – I don’t even remember her being tested. But she has so many tests…

Him: Oh, wait a minute, nope, this isn’t her file.

Me: Really, is there another little girl with the same symptoms as her?

Him: No, most of the file is hers, just not the dust mite allergy bit which was inserted by mistake. Now, did you have any issues to raise?

Me: This sounds ridiculous, but I am concerned about the dark rings under her eyes and her watering eyes. I was wondering about allergies and whether you could run some tests?


Sep. 11th, 2017 05:58 pm
emma_in_dream: (Brookes)
Buckwheat. Despite the name, it’s not a form of wheat. It’s a gluten free grain – the taste is summarised by my children as ‘yuck wheat’ and ‘suck wheat’.

When I gave the remainder of a bag to my Mum to feed to her rabbits, they would not eat it. They ate the other grains and pushed the buckwheat to one side.

Truly, this grain is a reminder that our ancestors gave up trying to grow some crops, they did so for a reason. There’s a reason why quinoa, buckwheat, etc are niche grains.


Jan. 30th, 2015 11:39 am
emma_in_dream: (bobby)
Now that I have calmed down, I will summarise. Ruby ate a little malt barley disguised in an ice cream.

She will have diarrhoea on Monday when school starts, followed by decreasing strength until the end of February.

I completely stuffed up and fed her poison. Poor kid, she will be sick and I am already in despair at the thought of another month of this.
emma_in_dream: (Default)
What a complete stuff up. I gave Ruby an ice cream thinking it was the gf vanilla version. No, the gluten containing chocolate version.

Literal tears all round as this could not be worse timed. She has just recovered from her last round. She will now be ill when school starts. Just fucking fucky fuck.
emma_in_dream: (kate bunce)
Fingers crossed that Ruby is now OK.

What I think happened – accidental gluten exposure on 13 December, followed by classic diarrhoea symptoms that lasted until 30 December.

Then gastro.

She had blood tests and her vitamin D, vitamin B and iron levels are OK. Also her gluten antigen levels are fine. This is good because I was unable to find another source of gluten in her diet when I thought she was being re-exposed. I was at the point of considering whether she had a dairy allergy as well, which would be a real pain.

For instance, at the moment, when we got to Karrinyup shops we can eat 1, undressed salad or 2, ice cream in a cup. Removing dairy would leave not much in the way of treats (gluten free sorbet in a cup).

I am pleased that her iron etc are OK, though it would have been easier if there had been something I could do there. She gets tired very easily and I cannot imagine how she is going to handle kindy. For instance, she did one and a half hours of practice kindy last year, followed by two hours of lying on a couch resting.


Jan. 14th, 2015 01:17 pm
emma_in_dream: (alexa)
My ongoing investigation into possible sources of gluten in the house is now deranged. I have gone through everything and I am reduced to phoning the help lines of toothpaste manufacturers. No definite word yet on the Nature’s Own probiotics (chemist cannot confirm, Coeliac Society says it is OK, manufacturer cannot be reached). Wouldn’t it be ironic if the gut healers were harming her gut?
emma_in_dream: (Highlander)
I need to record this so I can identify future bouts of gluten-related illness. But don't read it unless you are very interested in the movements of my daughter's bowels.

Read more... )

Ruby will not say how she is feeling or whether she is in pain. Like many children with chronic health conditions, she minimises because she does not want to go to hospital again (heartbreaking). However, she does look much better today so maybe a mouthful of gluten only means three weeks of pain?

Must say that I am sick of cleaning up filth, no matter how much it is not her fault she produces it.

Also, note to self, next year NO food to be eaten out at Christmas.
emma_in_dream: (sense)
My child is a massive overachiever. We saw the paediatric gastroenterology registrar yesterday and he commented that Ruby’s original antigen levels indicating coeliac disease were the highest he had ever seen.

BTW: This specialist does not need to see us again unless something degenerates. This - combined with the fact that last month was the first month free of medical appointments since September 2008 – could it be a trend?

3 things

Mar. 5th, 2014 07:07 pm
emma_in_dream: (Default)
1, I am very much looking forward to the Gluten Free Expo. We will be attending with bags for the goodies and lots of cash to buy stuff.

2, Baby_Elvis is working on a *Sherlock* vid with me!

3, Someone had the brilliant idea to make ‘Gigolas’ week celebrating the love Gimli and Legolas and the amount of fic written has virtually doubled in a week! Yay! Perhaps I could get something similar going for *Crusoe*?
emma_in_dream: (sense)
February has been a lovely month with (touch wood) no medical appointments.

Aside from one unscheduled trip to emergency to have a Barbie accessory removed from Ruby’s nose, we have not been to a doctor (touch wood).

It is amazing how easy life is like this. On the days when I am not at work we do not have to rush from appointment to appointment. Instead, we saunter about at a leisurely pace, enjoying dance classes for Ruby or doing a little light shopping. This is the life!

No wonder I have been a creative *hurricane* over the past month. Everything is so easy. Can this be life as other (most?) parents experience it?

Anyway, next month is already shaping up with the typical one medical thing per week profile, but I am hopeful that we may have restful months like this more often. Pearl now has virtually no appointments and surely, one day, Ruby will also have fewer.
emma_in_dream: (sense)
I aimed to have grace this year. I had none.

Once again, the year began with a fairly serious illness, followed by a new disease, followed by major life style changes.

We continue to go from one medical appointment to the next. I know my way around the paediatric hospital. In December I lran out of energy for medical appointments. I really resented the last two and had to drag myself into Ruby's pre-Christmas EEG.

I did not join Yuletide this year because I was in such a state of sodden exhaustion in October and November that I simply could not face one more thing.

I am very glad it is now the holidays, because I really need them.

My resolution for next year is for grace again. And for some ability to plan ahead with the children rather than just running with the easiest course because we are so busy with medical nonsense that we have no time for anything else.

Of course, all this is contingent on no one in the family developing another bloody disease. Good health for all of us, that is what I would like in 2014 because I am really sick of spending my life doing nothing but medical stuff.

Deep breath. Grace.


Dec. 2nd, 2013 08:34 pm
emma_in_dream: (X Files)
Ruby broke my heart the other day, when she asked when the doctor would make her better from coeliac disease. I had not realised she had not grasped it was for life. She now has a picture book explaining a bit more about it. I may also have to revisit the story I tell her about the pink cat with the sore tummy who Noddy drives to the doctor.

Also, I noticed that Pearl is confused at the difference between NF1 and coeliac disease as she conflated muscle weakness and eating wheat. I won’t try to clarify it until I find out if the children also have (as the State geneticist suspects) x chromosome linked hypopotassemia. Seeing the geneticist was really interesting, and a bit like therapy in that I got to talk at length about my kids’ many health issues and how it was a bit of a rollercoaster when you never know what will be diagnosed next.

At the same time, I do feel a bit like we are MUTANTS. But without neat abilities like being able to juggle fire or read minds. Perhaps these things will kick in at puberty for the girls.

2 things

Sep. 25th, 2013 08:37 pm
emma_in_dream: (X Files)
1, When we have our regularly scheduled afternoon teas, other people almost always bring gluten-free food for Ruby. This is an incredibly kind gesture, making life so much easier for her and for me. I appreciate how much effort goes into gluten-free cooking and it thrills me when I see her special food made by others.

2, Huckle and D let me sleep at their house on the weekend. This was nearly enough to get rid of the migraine I had had for days. I need uninterrupted sleep to get over my (rare) migraines, something which is not possible with the kids.
emma_in_dream: (Casablanca)
I am often frustrated by cooking gluten-free cakes and I realise that this is because the process is in conflict with my own definition of good cooking.

I have always thought that a good cook is not someone who can make something delicious from a vat of cream, some quality cheese and a slab of venison. Anyone could do well with those ingredients. A good cook is someone who can look in the fridge and make a meal for six from three fish fingers, half an onion and some left over mashed potatoes.

A good baker is someone who can assemble a cake from its stripped down components – some sort of fat (or oil, or fruit), some sort of binding agent (most likely egg), some kind of flour, something sweet (sugar, chocolate, fruit, honey), something liquid (fruit, milk, yoghurt). Those elements can be assembled as you like. Sometimes this leads to flops, but I’ve had some great successes. I remember, but could not replicate, a particularly delicious butter cake in which I used up some mango and substituted some strawberry yoghurt for milk.

But gluten-free cooking is all measure, measure, follow the recipe, no substitutions, niggle, niggle, niggle. It is so necessarily petty and rule-bound. Because once you remove the gluten, the whole cake becomes problematic so you then have to make sure you include your half teaspoon of xanthum gum per neatly measured cup of flour

I find this aspect of the gluten-free life really frustrating. You might as well just make packet cakes if you can’t actually use any creativity while you are baking. (Though even the packet mixes are hit and miss – some of them are simply inedible and others are OK).

Life Update

Jul. 9th, 2013 07:47 pm
emma_in_dream: (Default)
I am feeling increasingly anxious about the children which, I realise, is because I have not had any bad news about them for months. It’s been ages since Ruby was diagnosed with Coeliac’s disease and I have this terrible feeling the other shoe is about to drop.

This state of mind could rightly be called paranoid or over-parenting, but all my experience teaches me that every few months there is some kind of health crisis with children. It irrationally annoys me when people say that parents should just be chilled out because children basically just develop on their own. My own experience is that my children have been sick from literally the moment of Pearl’s birth, when she was whisked away to be worked on so she breathed. This was followed by nine days in the hospital while various health professionals trying to get her to feed and fed her through a nasal tube and my dawning realisation that there was something wrong long-term. (Turned out to be hypotonia).

After that I spent months going to various doctors and having them imply that I was an over-protective first time mother until, suddenly, when she was 14 months old, they turned around and agreed that yes, there was something wrong. They leapt straight to worst case scenarios which it turned out not to be. And indeed we’ve never had a satisfactory diagnosis for her real, ongoing hypotonia.

I find it very annoying when people say things like ‘well, they all learn to walk in their own time, don’t they?’ This may be *generally* true but, in my experience, no, they learn to walk after months of physiotherapy, while wearing foot supports and that hard-won ability can be undermined very easily, as when Ruby lost the ability to walk while prostrated by Coeliac’s disease. So Pearl got on her feet at 22 months and Ruby at 22 months, then became unsteady at 24 months, lost the ability, relearned at 28 months. This is not a trouble-free and inevitable trajectory.

Constant watchfulness combined with immediate intervention seems to be the only way to proceed, so right now I am trying to anticipate the next likely blow and also be calm. A state of cat-like wariness, like Marg Simpson’s, is what I must aim for.
emma_in_dream: (Default)
If the odds of coeliac disease are one in 150 and the odds of NF1 are one in 3,000, are the odds of getting both one in 450,000? Is that how it works?
emma_in_dream: (Default)
I finally understand a passage from Mary Grant Bruce's *Back to Billabong* about 'war flour'. Apparently gluten was taken out of war flour and put into munitions. Of course, this just poses another question - why?

'Cakes!' said Wally faintly. 'Jean, you might catch me if I swoon!'

'What's wrong with cakes?' said Jean Yorke, bewildered.

'Nothing - except that they are cakes! Jim!' he caught at his chum's sleeve - 'that substance in enormous layers in that enormous slice is called cream. Real cream. When did you see cream last, my son?'

'I'm hanged if I know,' Jim answered, grinning. 'About four years ago, I suppose. I'd forgotten it existed. And the cakes look as if they didn't fall to pieces if you touched 'em.'

'What, do the English cakes do that?' asked a pained aunt.

'Rather - why there are any. It's something they take out of the war flour - what is it, Nor?'

'Gluten, I think it's called,' said Norah doubtfully. 'It's something that ordinarily makes flour stick together, but they took it all out of the war flour, and put it into munitions. So everything you made with war flour was apt to be dry and crumbly. And when you made cakes with it, and war sugar, which was half full of queer stuff like plaster of paris, and egg substitute, because eggs - when you could get them - were eightpence halfpenny, and butter substitute (and very little of that) - well, they weren't exactly what you would call cakes at all.'


Apr. 16th, 2013 08:08 pm
emma_in_dream: (Alice Liddell)
The inevitable post-diagnosis depression is setting in.


Apr. 11th, 2013 08:03 pm
emma_in_dream: (Alice Liddell)
Does anyone know of a gluten free alternative to Vegemite?

Life Update

Apr. 3rd, 2013 07:47 pm
emma_in_dream: (Default)
Short version: everything is going so well!

Long version: The difference in Ruby is phenomenal. She has gone from being a pale, sick girl who only wanted to lie in my arms and who literally was too weak to walk, to being a bold, plump toddler in the space of a month.

All year I have known something was wrong. Even last year, actually. I could see she was increasingly reluctant to walk. I attributed this to her NF1 and I spent a long time getting her new orthotics and boots. The boots were particularly frustrating as they took 10 weeks to arrive. Though, having said that, there was a $300 discount on the $350 boots so there is some upside to being stuck with an inefficient universal health care system. All the while, Ruby was going backwards. Not developing, not even holding her own, but becoming less happy, less mobile and more clingy.

Then she started vomiting, which got worse and worse over the course of the month. By the end of the February she couldn’t walk and would only lie in my arms saying she felt wretched. I took her to the GP twice and the hospital twice. The second time she was down to 9.4 kilos (10.5 kilos being the bottom 3%) and still dropping. By this stage I was convinced it wasn’t a virus – I would have got it if it had been because she threw up on me virtually daily.

I thought it was a tumour so the relief when it wasn’t was enormous. They mentioned the possibility of coeliac disease but sent us off without any treatment plan. I decided to try removing gluten because I was desperate. I could see that within a week she would be in hospital on a drip because she could not go on as she was.

The results were almost instantaneous. She only threw up one more time after I began removing gluten, and her dire rear went after about three weeks. She ate like no child I have ever seen – with a desperation really – because she was making up for not having absorbed food for so long. She ate almost constantly while awake for the first two weeks, and has only begun to slow down now to the point where she can go, say, a half hour without eating. She has stacked weight on – is now heavier than she was at the beginning of February.

Also, she has begun to caper around in her new boots. She has had to relearn how to walk with straight legs instead of crooked ones, and she is doing a great job. She even dances now. We went to the park and she went on the play equipment instead of sitting on my lap and crying! I am so happy.

So far the gluten-free diet has been relatively easy but expensive. Hopefully it will get less so now that Swancon is over and I can concentrate on preparing food myself rather than buying pre-made treats.

Would it be nice if Ruby did not have two separate, fairly significant medical issues? Yes. But coeliac disease seems relatively easy to manage and the difference in her is so clear that the paediatrician decided there was no need for the bowel biopsy (with attendant general anaesthetic at her age). Between the high antibody results in her blood test and the massive improvement in her health on a gluten free diet, the paediatrician agreed to a tentative diagnosis without further testing at this time.

Every time I look at her I am just so incredibly happy to see her so healthy and happy in herself.

(Also Pearl is pleased that Ruby is well enough that there is finally some attention for her as well!)


emma_in_dream: (Default)

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