Rhiannon's Story

Last year, Rhiannon’s mum, Sarah, sent us extracts from the diary that she kept of Rhiannon’s first six years. Here is her update for 2006.

After a perfectly normal, breast-fed first three months, Rhiannon reacted violently (sick, swelling, eczema) to formula feeds, then banana, then parsnips and a whole long list of other foods.

By the age of two she was seriously underweight and refusing to eat even the limited range of foods that she could tolerate. An endoscope investigation showed severe reflux, a ridged and scarred oesophagus and shortened villi, so she was prescribed Rantinidine, Domperidone, vitamins, probiotics and, when she was still not gaining weight, artificial nutrition. (For more information on artificial nutrition click here.)

After disastrous experiments with naso-gastric tubes, she had a full gastric tube inserted to allow direct feeding into her intestines, after which she gained weight and started to be able to tolerate new foods.

Two years later (Rhiannon was now four) her feeding tube was removed. She continued to gain weight and she started at what Sarah calls a ‘fantastic, caring nursery school’ where she made good progress with no major reactions.

By early 2005 she had been able to halve the doses of reflux medicine but was getting tummy ache and diarrhoea when she ate wheat. When we last heard (end of March 2005) she was scheduled for a coeliac test in the summer. We have just received Sarah’s latest update...

Hello, Foods Matter !
Have just received and devoured your latest newsletter, cover to cover, and realised I owe you an update on Rhiannon's progress - it can't be over a year since I last wrote! Hope you are all well and the relaunch goes smoothly. I love all the unusual snippets, like new-car toxins upsetting people with Tourette's. You perform a real service in bringing all these seemingly unrelated conditions under one umbrella, and pointing to the likely causes. Government take note!

Anyway... Rhiannon is now in her second term of Primary 1, coping and behaving well - in school at least! Her coeliac test came back negative thankfully so she eats carefully rationed pieces of pitta bread, fig rolls and other favourites when everyone else is tucking in. Her weight and height are catching up a little and she's now in age 4-5 clothes (age 61/2) - much easier for school wear.

The danger of healthy eating
However there have been hiccups! In Scotland, P1 and 2 pupils are supplied with free fruit in class several times a week. I assumed (never assume!) that a letter would be sent home before this scheme kicked in... Unfortunately our first notification was a phone call from the school office on Rhi's third day asking if we could collect her as she had had a reaction.

It turned out she had helped herself to a slice of kiwi fruit, then gone up to the teacher with a faceful of hives and said calmly, ‘I think I need my medicine.’

She had had kiwi once as a baby and disliked it; I subsequently read how allergenic it is and never offered it again, putting 'avoid as a precaution' on her nursery notes which had been supplied to the school (but not then read). Fortunately a dose of Piriton was enough, and served the useful purpose of making staff take her allergies seriously but not panic as prompt medication is (almost always) all that is needed.

And of lamb...
Also in the past year we have discovered that lamb - the 'least allergenic meat,' which dramatically upset her eczema as a baby, also triggered her reflux! Just as we'd got her completely off the Ranitidine and Domperidone too. After a week of her gagging at breakfast time we gave in and put her back on a low dose of Dom, which we then phased out again after a month or so when the problem subsided. Previously the reaction was masked by herchronic reflux (before she was prescribed the meds).

Ears - and antibiotics
Last week we had a bit of a torrid time, with a series of mini-illnesses culminating in an ear infection. The out-of-hours service nurse, after hearing her history and consulting a book and a doctor, prescribed Amoxycillin - Rhi had only previously had Augmentin (when her peg tube was put in) and apparently Co-Amoxiclav for an infection in the tube, which I confess I don't remember, with no dramatic reaction to either.

Anyway she had her first dose of Amoxy, woke feeling much better and asked to go to school and had her second dose. At 9.20 in came the call from school, the poor mite had had galloping diarrhoea, and was sick as I took her home. We saw our own GP that afternoon who said her ear was certainly still inflamed, and prescribed Erythromycin instead, but lo and behold after the second dose Rhi was being violently sick.

An out-of-hours doctor told me what I wanted to hear - just leave the antibiotics and hope she gets better on her own. Thank goodness she did, although she gave us a fright two days later saying her ear was sore (after her dad went off at the deep end she decided it was actually her stomach). She's now back to being a lively handful so hopefully no more bugs for a while.

Alternative antibiotics?
However, now we know antibiotics are a definite no-no for her we need other options for the future. We know about probiotics, but would these alone be enough to fight off a serious infection?

I'd be eager to hear if anyone knows if there are other treatments available. The doctor said one in 10 people react to antibiotics, so there ought to be alternatives!

Ice cream time?...
On a happy note we are all looking forward to trying the Swedish Glacé cones and choc ices when our health shop gets them - I think I'll have a tear in my eye at being able to buy my wee girl her first cornet! (All the supermarketdry cones I've checked have egg in.) Thank you for letting us know about them. Long live Foods Matter!

Click here for Rhiannon 2009

Click here for more personal histories

First published in 2007

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