"I felt powerless and terrified" - Lisa and Francesca's ARFID story

Lisa and her family live in Birmingham.

Daughter Francesca has always had difficulties with food, but last year they hit crisis point when Francesca developed a bad case of tonsillitis, but her ARFID meant she couldn’t take antibiotics.

As a family they enjoy the outdoors and going on trips in their touring caravan. Lisa has found helping Francesca manage her eating really difficult at times, and wanted to help other families experiencing the same thing so started her instagram channel, arfid_ourstory. Francesca is also currently being assessed for Paediatric Feeding Disorder (PFD).

This is Lisa’s story…

I’ve wanted to share our story for a few years, because I think if some health professionals knew more about ARFID and PFD, our experience would have been so much easier.

Francesca was born quite early, and she was tiny when she arrived. She was a really happy baby and slept amazingly, but now I look back on it, it’s always been a struggle to feed her. It was as if she just wasn’t really interested in food. Weaning was a struggle and eventually she was diagnosed with quite severe acid reflux.

Once she passed her first birthday she began to eat more easily, but even before she could speak she ate a really limited diet. .

Over the years we got used to her very limited diet. She ate toast, boiled rice from our local Chinese takeaway, and a specific brand of crackers. It just became our normal.

But we had a crisis last year. She was sent home from school ill, and I took her to the GP. I’ve always had a good relationship with them, and they understand that she just can’t take antibiotics. We’ve tried a few times over the years, but she won’t do it and is always sick if we manage to get any into her so it’s a waste of time. Plus, it’s a really distressing experience for all of us.

The GP said she had tonsillitis, (it eventually turned out to be Strep A) but there wasn’t anything they could do. We went home, but over the weekend she got really ill. Because of her tonsillitis, food and drink tasted funny, so she wouldn’t even drink water. Over the next few days she got so ill that both her ears perforated, she couldn’t walk, and didn’t even want to watch TV.

The GP sent her to hospital and it was awful. They mostly ignored her and just talked to me, but despite everything I’d said about ARFID, at one point they told her if she took the medicine they’d give her a lollipop. I tried to explain to them that she doesn’t eat lollipops (I wish!), but the hospital doctor ignored me. I asked them to give her intravenous antibiotics and fluids, and told them again that she had ARFID and couldn’t take antibiotics orally.

They were so dismissive, and just said they had a lot of experience of looking after children with autism. They insisted they knew what they were doing, and said children with autism would rip out an IV, but could take medicine if they were really ill.

I know autism and ARFID often go hand in hand, but it was so frustrating trying to explain to them that they aren’t the same thing. I felt powerless and was terrified she was going to die. Anyone who understands eating disorders knows what a strong grip they can have on people, but I realised they weren’t going to understand, so we went home.

The next day I was just beside myself. I took her back to hospital but they still refused to listen to me. All they said was that if she collapsed I should bring her back. It was so stressful. Luckily she turned a corner that afternoon and slowly got better, but I think I’m still traumatised by the whole thing. If the doctors had just listened to me, or even knew a tiny bit about ARFID, I don’t think it would have been so awful. Hopefully sharing our story will give some medical professionals a better understanding of ARFID and PFD so no one has to go through what we did.