Elodie started day care in April. After two days, where she only went a few hours, she got sick with a major throat infection. Oh my, this was the worst month in 2 years. The lack of sleep, miserable days, the feeling of not wanting to face the next day. It was like going back to the time before we went to the first NoTube eating school. And it made us appreciate even more what we have and what Elodie/we have accomplished.
A sick child is a special needs parent’s worst nightmare. Children with eating disorders (like infantile anorexia, ARFID, selective eating disorder sensory processing disorder) have difficulty eating when they feel good, so imagine the situation where they don’t feel good. Right!
Elodie being sick continuously since she started day care in April has been quite a roller-coaster ride for us. Last week, she had a 7-day fever of 40 degrees. Here in the Netherlands, the GP basically asked, is she drinking and is she still breathing? Oh, then it’s fine, just give her a painkiller. Whereas the paediatrician in Belgium later told us: 40 degrees is always alarming, give us a call, so we can check her out. What a difference!
In terms of not eating, that week threw us back 2 years in history. She didn’t eat for days. Nothing at all. We were back to square one. It was similar to the time she was hospitalised during her 9-day hunger strike, which was incredibly traumatising. She would only drink water last week, which has no calories. If we gave her some food she would vomit brutally. After vomiting 4 times in a day we gave up and let her decide on the course of action. That course was not eating at all. She lost 1.5 kg in a week going back to almost being underweight again.
So if we say she eats nothing when she is sick, it is really nothing, 0 calories. I mention this specifically because when other parents tell me their children aren’t eating when they are sick, and they tell me what they ate, that’s like what Elodie would eat on a good day.
I read in an article that the body needs to get rid of the sugars because that is what viruses and bacteria feed on. Correct me if I got something wrong. But that is the reason that people lose their appetite while they are sick.
Every day I could see her become thinner and thinner. Luckily she had a bit of extra weight that she could shed without getting in the danger zone immediately. Eventually she would start to eat little things slowly. It’s no where back to normal, but she is trying and will get there when she is ready.
And these viruses suck, but it is beyond our control. She has to go to day care, school, work some day. We can’t keep her at home forever. She loves being with the teachers and the other kids.
Last but not least, after her round of fever, at the dentist this week we found out that she has thrush. I saw something fishy,, but it didn’t look like the thrush she had as a baby. She didn’t have a white fluffy tongue, but some creamy spots in her mouth. So I didn’t inspect it further. Before we got the Daktarin oral gel we used orange juice, which must really hurt. Now she will actually tell me it hurts and she doesn’t want it, whereas when she was a baby she endured it and I saw funny faces but didn’t think it would hurt that much. Anyhow, she is currently much happier with the gel, so that was a lucky shot. What works for us is that she gives it to her daddy after we are done with applying it in her mouth. Giving children with eating disorders medicines, oral gels, medical drinks is terrible.
Yesterday she was eating an ice cream and her tongue started bleeding. It’s terrible for a parent to see your child with these issues again. Being sick impacted her eating and now thrush. However, to see her still trying to eat while she is in pain is such a big development. Before, we started to say no as she wanted food that we didn’t have at home, instead of rushing to the supermarket, or if she wanted to eat in bed. Now, we are back square 1. Whatever she wants to eat, we will get immediately.
When times get better, you get used to it really quickly, and you sort of ‘forget’ the hard times. This gives us a renewed appreciation of the progress Elodie has made. Hopefully, we will get some more stability at home during the summer months.
A mum (who is planning to go to the NoTube eating school this August) asked me how we could stay so calm, that she would go crazy and that she hoped NoTube could help them as well, so she could cope with these situations like me.
It made me realise that we came a long way in the past 2 years. Everything that we have learned at NoTube: how to get through times like these, how to deal with it, which methods we can use when she gets better, and how we can minimise the weight loss. We know our child thoroughly and we have fall back scenarios, we know what to do to stimulate her when she gets better. I think knowing that we have the tools to help her gives us more confidence and trust that it will be okay. And she will eat better when she gets better from what we have experienced. We just need to face and endure it now.
We do see that when she decides to eat while sick, she really did make a lot of progress. She ate an entire ‘frikadel’ (big sausage), half a cup of noodles, a slice of apple pie, an entire ice cream, a slice of bread, an entire apple. And we have learned to cherish those moments and to hang on to it.
They told us that the first year will be full of viruses, infections, the flu, it will get better after that. We have been to hell and back, we will survive again. Of course we still worry, but the only thing we can do is cope and try to stay positive.