GUT FEELINGS

One year ago my son was diagnosed with a stomach parasite called Dientamoeba Fragilis. I didn’t realise at the time but this parasite is way more common than I could have imagined & thanks to littlies & their still-developing learning to wash hands when going to the loo, this parasite is transmitted frequently in daycares, pre-schools & primary schools (faecal-oral contamination).

Fast forward a year & March-June 2018 was a nightmare at home – my middle child was aggressive, angry, easily upset, extremely tired, having night terrors almost every night, & off a lot of foods. As a working Mum of 3 children, this was exhausting. Of course there’s also a clingy 1 year old & all the other mundane parenting chores that seem unavoidable including washing, supermarket shopping, school drop offs & pick ups, constant negotiation of the 2 older ones stretching the rules.

I went back to a different GP after the previous one told me it wasn’t his gut & that perhaps I should “do a positive parenting course”. The 2nd GP (let’s call her Dr JG) was extremely thorough, listened to me ramble about all the sudden changes in behaviour & wisely referred me to a Paediatric Specialist in the hopes that this Dr may be able to deduce whether in fact it is behavioural, something going on at school he’s not talking about or a sleep disorder. In the meantime I still had a gut feeling (yep, there’s actually pretty cool research on ‘gut feelings’), that it was in fact his gut playing up. Since that appointment, he has mentioned “feeling sick” quite frequently. By pure luck I stumbled across a brilliant Dr based up in Pymble who is a GP but practises Functional Medicine & specialises in the gut. Jackpot! She was warm, caring, considerate, also a Mum of 3 herself & just got it. I felt slightly nervous about the 22 day parasite protocol – which includes a very strict diet of no sugar (essentially low-fructose), no gluten & low carbohydrate. So no fruit except berries, no pasta, rice, crackers, bread, cereal. Patients can have dairy, high quality meat, all veggies (except potatoes), eggs, seafood, nuts, seeds & legumes if well soaked. Pre-antibiotics, his tummy needed to be empted which meant a bit of cleanse ie 2 days of LAXATIVES! Then to maintain/build back up gut flora, he has 2 months of probiotics. 10 days of one antibiotic 3 times a day, followed by another antibiotic once a day for 10 days.

I wouldn’t say we sailed through it – getting the laxatives in him was horrendous (it literally took hours each time). The antibiotics went down a little easier but were also time consuming & every morning he had to take them, then we needed to race to school, give them to the office to put straight in the fridge, then communicate with after School Care to remind him to pick them up from the office & put them in the fridge there, before picking him up from school, & racing to get them back in the fridge at home before consuming again straight after dinner. He had a few feral days around day 7 – anyone who was at his rugby match can vouch for that. I now understand this can be the “die off” – the GP recommended he took some charcoal to flush it all out. Some anxiety also crept out – including a  repeated “feeling” (usually soon before bedtime) about being deserted in a grey land with no one around.

In terms of the diet, he did incredibly well – he ate some foods he hadn’t in a while including carrot & broccoli which he now asks for. He tried a gluten-free almond meal bread which I made. He even enjoyed a legume-based ‘pasta’. It wasn’t easy & he felt hungry a lot of the time. I felt his diet became too skewed towards proteins (meat) & dairy as they filled him up slightly more.

Nearly 2 weeks on from finishing the protocol (we haven’t had the follow up tests yet), I can honestly say he still has feral moments but he is much more consistent, less agro, within 2 days of starting the antibiotics & diet he stopped having night terrors (which was a huge thing for us). He is loving me a bit more but still tells me not to ever give him a kiss in public! We are slowly transitioning into his diet – but aiming to do less gluten & less sugar.

I am not a Doctor, nor do I claim to be any form of wisdom in the medical profession. The reason I write this is to help anyone who might be on a similar type of rollercoaster – when he was first diagnosed I started researching & honestly couldn’t find that much in the way of personal experiences. I can genuinely say it was worth every moment.

 

Dientamoeba Fragilis

When I received a call from our family GP in June 2017 telling me that my six-year-old son had Dientamoeba Fragilis, I was totally unsure how treatment would progress.

She told me it was great that tests had uncovered what was going on in his tummy BUT there has been conflict between doctors on whether it actually causes pain & how to best treat this parasite. Initially recommendation was to introduce a daily probiotic and yoghurt to potentially crowd out the “bad bugs” in his tummy.

First of all, how did he get this? Unfortunately it is one of those lovely bugs that is transmitted via “faecal-oral“. I found out soon after he was diagnosed that 2 girls he plays with at school have had the same parasite this year.

He complained of a sore tummy daily for the last 6 to 8 weeks. I know that most boys fart a lot (TMI?) but he never did until the parasite arrived, much to his amusement & my bemusement! His behaviour also became very erratic with outbursts of anger interspersed with being over emotional and crying more easily than normal. His sleep at night had also regressed, with him waking at 5am daily & always waking during the night. He also had night terrors – “waking” crying & inconsolable. A few weeks ago he was shouting at me “shut up”, throwing pillows & books at me. He then eventually lay down & simply closed his eyes. He has no recollection the next morning.

Treatment
I am not averse to taking antibiotics however if I am able to cure the bug by diet & natural supplements (including kefir & probiotics), then I’d be crazy not to.
So what have we tried?
Kombucha – he tried one sip & said it was too fizzy (he’s never had a soft drink).
Coconut kefir – hated it.
Probiotics – Inner Health for Kids is flavourless & he has been having it daily.
Wild oregano oil – I put 2 drops on the soles of his feet for a few weeks.

Bone broth – I bought the frozen cubes & snuck them into low-fructose smoothies packed with berries & natural yoghurt. I would deem this a success.

Low-starch, grain-free, sugar-free, low fructose (& nut-free for school) diet. Well this was the most challenging….
Fruit – he is currently eating berries only. Previously he would eat a couple of bananas every day.
Dairy – we only have organic milk, yoghurt & butter in the house.
Yoghurt – is it just me or is a yoghurt with claims of probiotics just cancelled out by 15% sugar? We have organic natural or Greek only with no added sugar.
Meat – even though I haven’t eaten meat for 20 years, my children do consume high-quality, organic, grass-fed meat. Organic beef mince, organic lamb, organic chicken are on the Menu.
Seafood – they love crumbed fish so I crumb fish fillets in an organic egg & almond meal to keep it grain-free
Grains – this is by far the toughest area for my son. So far I have removed all gluten. This has meant more rice & corn based products which is also not ideal. . We are using a rice & corn based pasta (Aldi). For breakfast he either has rice puffs (100% brown rice), corn flakes (I’ve found a brand less than 6% sugar), gluten-free Weetbix (made with sorghum, about 2% sugar)

Bread – the biggest failure by far! He has not liked any of the gluten-free breads I’ve tried including Deeks, Naturis, & even the Coles & Aldi home brands. I’ve had success with 2 types of gluten-free wraps only.

We followed this gluten-free & low-fructose lifestyle (diet is the wrong word) for about 6 weeks. He slept a bit better, was less emotional & angry, & never complained about a sore tummy.

Then this thing called life got in the way. There were parties, play dates, rugby matches and evenings out. The anger and tears are back. Last night he woke in such a bad abdominal pain around 1:30 AM (crying, couldn’t even get dressed he was in such pain) that we took him to hospital. Of course nothing showed up. He has complained of a sore tummy again today.

This is just our personal experience. I’m not a doctor or a nutritionist. Go with your gut in every sense of the word – I was chatting to a family today whose son has had some additional behavioural needs & they too have experienced the profound positive outcomes of a bio-individual diet, whether it is Paleo, gluten-free, dairy free, vegan or more tailored to crowd out certain foods that your body reacts to.