We haven’t experienced such a bad, exhausting, draining, dark period in a long time. These six months are so hazy in my memory, it was plain survival mode. It made us realise that after our first NoTube eating school our life started to become increasingly ‘normal’. After around 9 months were mostly free of (food) stress.
We didn’t worry too much about her intake, we tried to do fun things, and were doing more social activities. For parents of special needs children this is not given. It takes energy and worries to go outside their comfort zone. Being with friends, or being around other people would be incredibly draining.
But these six months were just terrible.
Elodie was continuously sick since starting day care in April until December. She was sick at home more often than going to day care. I wrote about it on another blog post too. It was a terrible time. Besides caring for a sick child, being sick yourself as well as your partner, there are additional worries about the food intake. She didn’t eat for days, would vomit even water, would vomit phlegm, and during the night when she was asleep she would cough and puke phlegm too. I didn’t have any duvets and sheets anymore. A plastic bucket was next to me to catch her vomit. I got quite skilled doing this. The cycle would go like this: would vomit, be upset, cry and vomit more, so we had to find ways to distract her immediately if this cycle would start. We found that turning on the TV helped with that. We didn’t have a daily schedule any more because of the many hours awake at night. Sometimes she would fall asleep at 16.00 and then wake up at 22.00 for a few hours.
In a little over a week Elodie lost 1,5 kg. We knew this could be replenished with the medical nutrition, when she would feel a bit better. Somehow she is more eager to drink it when she feels a bit better, as if she knows she will feel better quicker.
The biggest difference with a normal eating child is that a child with an eating disorder will not (or barely) eat while ill. A normal eating child will still eat snacks and sweets. For most people with normal eating children it’s incomprehensible that a child will not eat anything. It’s funny if someone says their child is ‘not eating anything’ while sick, and when I ask what the child will eat. I still get a list of food that is similar to Elodie’s normal eating days. So this very different from our ‘not eating anything’.
You get back in the negative, depressing mindset because it’s just too much to handle. I started working, and I was getting EMDR therapy for all the trauma’s that we endured in the last few years (and apparently even longer ago). Add a non-stop sick child, sick husband, and sick me, to that equation, that in repeat, and you will understand how I felt. I kept reminding myself of what Eva from NoTube said: eating is like cycling, even after sickness they will eventually get their capabilities back.
Teachers worried too
In August even the day care teacher told us that she was worrying about Elodie. She was tired every day, looking very pale with dark circles underneath her eyes. Every weekend she would be sick and have a 40 degree fever. It felt like we had a prescription on painkillers for her. That can’t be good.
Elodie would eat very little at the day care and the teachers started to worry as well. She was more often at home than at the daycare. I have never used up so much money for nothing in return. A regular (day care) day costs about 60 euros. We were mentally prepared that she would be ill when starting daycare, but we were not ready for this. Of course or local GP was useless, not reading through our files. After the urine test came back with protein in her urine they said: we don’t need to do extra tests, it’s fine.
Nevertheless, I am so happy that we decided to keep her at home as long as possible (before going to day care) because she was developing her eating capabilities steadily. While sick, she barely ate, which sort of threw us back to the time before NoTube.
NoTube helping us again
After our call with NoTube’s Dr. Scheer, we went to AZ Turnhout again. They took Elodie’s blood and urine for checks, and it came back good. We were happy to see that living off medical nutrition and barely eating food was still enough for her body to be healthy. The pediatrician told us that ideally she needed more rest, so her body could recover. When her body gets healthier her immune system will as well. So we had to think of a plan how to incorporate more rest into our daily lives.
Next to that they did many checks on her by several disciplines, every check that could be tested from the outside was done. Blood and urine tests, stomach scan, genetics etc. We visited the hospital a lot and she was quite traumatised by getting her blood taken. It was heart breaking to see her so upset, but we had to do this. You only know for sure if it’s measured. In the Netherlands they don’t want to spend money on those extra checks: oh she looks fine don’t worry, just get a painkiller. It’s ridiculous, we are paying loads of money for our health insurance.
Luckily this time around we had enough guidelines from NoTube to get through this.
We weren’t aiming for Elodie to attend day care from 09.00 to 17.00 anymore. But would aim for her to finish her lunch there, as this was a nice learning experience, and pick her up shortly after. But most of the time she was sick. If she had a little fever we would keep her at home. If she started to be sick we would already keep her at home until she felt better, otherwise she would definitely get full-blown sick with very high fever. We had to be very careful, and it was a difficult balance. Luckily the teachers were very supportive, and they would call us if they felt that Elodie was feeling off.
After August when we had a better balance, she was actually eating better at day care than at home. It was like we were thrown back to our pre-NoTube era. She didn’t eat much at home, didn’t try new foods anymore. However, the few days that she wasn’t sick we saw all the improvements she did make. Bigger quantities, asking for food, saying that she liked it, and trying new things. You start to appreciate those moments again.
Elodie would be sick, she would get better and then that cycle started over. But we started to feel more confident, knowing she would get better and her eating would get better. And her eating was better when she felt good. That she didn’t forget what she had learned, just like Eva from NoTube said.
One day we went out for lunch and she was eating very well. So good that an aunt didn’t believe she had eating issues because she was eating better than her ‘normal eating’ granddaughter.
December was the first month when she had 3 weeks of not being very sick. She had a stomach flu but recovered quite quickly but nothing else. We kept her at home when we heard that the stomach flu was going around the day care, so we kept her home. But even two weeks later she still caught it. So this was a milestone for us.
It was quite interesting to see that her eating preferences were the things that she ate when she just started eating 2 years ago. When we just started the eating school. And even with an the setbacks her weight was still in the healthy range.
Chicken pox vaccination
I read online that the chicken pox were also spreading, especially after the Covid restrictions were loosened. Some children can get very sick, and for children with eating disorders it’s even worse. Next to that Elodie can’t stop scratching when she is itchy, and I don’t want her to be covered in scars. So we decided to vaccinate her against the chicken pox. I am happy we did as we would later learn that there were a few cases at school.
The nice thing about day care was that she learned to eat new things, and would try new things increasingly. Especially when her favourite teacher was at the day care, I think she liked to make her proud and feel good about herself after the compliments. She was also open to ‘food and eating rules’ at the day care, even though they were less strict due Elodie. She would eat some fruit, 1 slice of bread, milk, cookies, and wild occasionally try new things. Maybe it’s peer pressure as well, or trying new things because she saw other kids enjoying it. Probably a bunch of factors combined,
Also, being around other children, making friends, getting into ‘fights’, being in another environment without me and trusting and feeling safe with others was good for her development. She learned so much, it was amazing to see. The teachers (us too) were very happy with this progress. Saying goodbye to the first ‘institution’ and teachers who were friendly to us and looked very well after Elodie was emotional and scary. These people are real gems.
Just a month later Elodie would start primary school. This was very exciting for us. We have worked so hard to make it (the eating) work for this moment. That she has enough energy to go through a normal school day. That she can eat a bit, so she won’t be hungry or feel left out. New teachers, new routines, new kids. As Elodie is highly sensitive as well it worried us quite a bit. Will she enjoy it? Will she eat? Will she complain every day that she doesn’t want to go?