The new year started really well! Elodie was eating, at least, around 800 calories a day on her own. We could see progress almost daily. Eating new foods, bigger amounts, asking for food, telling us she is hungry and saying that she loves eating and loves food.
Even though it was going well, there was still this nagging anxiety: how long will this last, what if she gets sick, what will happen when she goes to day care in April. This is a feeling probably all parents who have a child with an eating disorder, feeding disorder or ARFID can relate to.
She started eating meat (rib eye, entrecôte), she liked it quite rare, and she loved Wagyu A5. Wagyu is quite fatty meat, so it’s easy to chew. A bit too much salt was added to my liking, but she really enjoyed eating. She ate half a children sized pizza, tiramisu, different sorts of pasta and a variety of sauces, 4 x mini bifi, fish, broccoli etc. just to name a few. Not every day was a big feast, but it became more regular. And every day she ate a steady amount of food.
“I love food, I love eating, this is so good! I want more”. Were a few sentences that she would say to us daily. Seeing her eat is the most magical thing in our world. It brings us so much joy as we just want a normal life for her, and for us.
Bad times coming
By beginning of February she started coughing, and her food intake decreased a little. It was still quite good, and we were happy to see that she was still eating even though she was not feeling fantastic. She would still try new foods, show interest and was really enjoying it.
We were really anxious for upcoming April as Elodie would start day care then. My husband had to go back to work, and we noticed that she was quite interested in other children. We knew that chances of her being sick were going to be high. The last 3 years she has never really been sick or down with the flu. We hardly met up with others and stayed far away from people who had signs of the flu.
The COVID-19 lock down made sure there weren’t many things to do outside, so influenza was at an all-time low this year. Also, not meeting up with sick people wasn’t that frowned upon any more because the general rule was to stay at home and not meet people, especially when you have signs of having the flu.
Before going to day care we had a few meetings with the day care team. They were wonderful. Our social workers would go to the day care a few times a day during mealtimes and reduce that frequency when Elodie felt safe in her new environment. After 1,5 weeks the social workers didn’t have to go there any more. We gradually increased the hours at day care over a period of 4 weeks. The first week she was eating quite well during snack time and lunch. She was very proud of the food she had eaten. It was wonderful to hear. She would eat a third of what an average child at day care would eat, but considering her starting point and her progress she has accomplished so much already. We had a plan B (own lunch box with food she does eat) in case she wouldn’t eat the food at day care, because at home she doesn’t eat any of the things she eats there. No cookies, bread, milk etc. learning that she would eat all that was amazing.
More bad times
After two days of day care she started getting sick, and we didn’t know yet that April was going to be one of the most terrible month in a long while. She got the worst infection in our book, a throat infection. Her throat hurt a lot, and she had occasional very high fevers. She wouldn’t eat at home but also at day care she wasn’t interested in food anymore. The teachers got worried seeing that she would barely eat anything the entire day. We told them it’s okay, and we would increase her medical nutrition if needed. Day care is about socialising and having fun, anything else is a nice to have.
She would sleep a few hours, then be awake for 3 hours and then sleep again. When she coughed she would vomit, including whatever she had eaten. This could happen multiple times in a short period of time. I ran out of sheets and duvets, I just couldn’t keep up. On top that she wasn’t eating at all, she lost 1.5 kg in a bit over a week, and had multiple days when she would only drink a little bit of water, 40 degrees fever, and we didn’t get enough sleep. These days were totally killing us. Her weight was still in a good range, so we weren’t that worried about her weight. It’s the lack of sleep, a very sick child, and 3 years of non-stop misery which had fully drained us already. We have never had the chance to properly recuperate.
Count your blessings
It did make us realise that the period after we went to NoTube’s Eating school was so nice and stable. We were doing well seeing the circumstances. And you get used to that quite quickly.
Unsurprisingly our local GP’s didn’t worry about her situation, and they told me that vomiting is a part of being sick, and she should just learn and understand that. The lady didn’t even read through her file, and only started reading when I spoke about Elodie’s traumas since birth and her infantile anorexia. She prescribed the reflux medicines eventually, but was so passive-aggressive towards me. I wrote about this catastrophe in another blog. Next to that, a week later the GP didn’t even want to do additional tests on her urine while they found proteins in it. That’s unbelievable!
Dr. Scheer from NoTube to the rescue
We had a call with Dr. Scheer from NoTube. Frankly, the NoTube paediatricians are the only ones we fully trust, and we feel that they act in our best interests. He took the time to call us on a Sunday afternoon. Which doctor will give up his free time in the weekend to help a patient? He prescribed medicines for my husband and Elodie because they were coughing so much.
Raf had sprained his ribs and our local GP told him it was okay. It was okay that he had been coughing since February (more than 3 months), sprained multiple ribs, and he should just take some painkillers. Well, at least they send him to the hospital to get an X-ray done for his ribs. With the medicines Dr. Scheer prescribed the cough was almost fully gone in a week. Such a big difference!
Doctor Scheer told us to find a good GP which acts in the interest of the patients. So, we decided to go to AZ Turnhout in Belgium, because Elodie was coughing since the end of January, with a 40 degree fever for about 5 days, and seeing her weak like this made us worry. Two years ago we were treated well at AZ Turnhout, which can’t be said from the doctors in the MMC in Veldhoven the Netherlands.
Let’s go abroad
AZ Turnhout’s amazing paediatrician
Dr Libeert, the paediatrician in Turnhout’s hospital was so incredibly kind and empathetic. I gave him the morning urine samples and Elodie had to go during the appointment, so he asked me to fill new bottles for fresh urine. He took 1 hour to check Elodie and stated that we must have had a tough journey the past 3 years. I started to cry immediately, and a weight was lifted off my shoulders. Normally I had to ‘fight’ local medics to accomplish the tiniest thing. And here was a super nice doctor who was so kind to Elodie calling her sweet names and taking me seriously, no judging or blaming. He told me he wanted to run various tests to make sure that it was nothing rare causing the eating disorder. They did a blood test, urine test, stomach echo, and we saw a genetics doctor. Luckily they didn’t find anything.
We went to the hospital for her cough and this doctor wanted to do a thorough check and told us that he would like to check up on her on regular basis in the future as well. I mean, that is unheard of here in the Netherlands. Our GP even refused to do a proper urine test after finding proteins in her urine. Hell, I didn’t even get to see our GP after my shitty encounter to request the reflux pills, I got phone consultations. I think they hate me.
Still sick continuously
Since April, Elodie had a maximum of 2 consecutive days of not being very sick. Every time she is sick she also has a high fever (40 degrees) for a couple of days. She is sick continuously and if it gets bad she stops eating entirely. During the night she quite often has reflux, so when she starts coughing we need to be prepared for some vomiting. Especially if she has eaten a bit during dinner. It’s so sad, because then it feels like she gets punished for eating. This is going of for 3 months now…. When will it stop?
Luckily we can get her to drink, and she takes her medical nutrition. This makes sure that she doesn’t lose too much weight while sick. We are so grateful that she drinks it. We do have to push her a little to make her drink the medical nutrition, but I feel that when she is a little sick but still weak she understands that she needs it for more energy.
We ‘trained’ her to be able to drink the compact version which is 300 calories in 125 ml, the other version is 300 calories in 200 ml. So that’s much more liquid she needs to take, but the compact version is heavier on the stomach.
In the beginning, 1,5 years ago, it took us an entire day to finish 1 bottle, it was sip per sip. She would vomit easily because it’s so heavy on the stomach. Now she can drink an entire bottle in one go, and when she is sick (but not vomiting). 1 medical nutrition drink per hour, and sometimes 4 throughout the day if it’s possible, and if she eats nothing because she is sick. With nothing, I mean really nothing. It’s funny how the definition of nothing is different for parents with a child who doesn’t eat and one that has no eating issues. For Elodie, I don’t think it interferes with her hunger feeling much, because if she has a good day she still eats quite well after drinking all the medical nutrition.
When Elodie isn’t sick we see that she is still making progress. She can eat a bigger amount of food, and will try new foods still. For us this was reassuring to see because we were a bit worried that she would forget how to eat, even though NoTube told us they would still remember their newly acquired eating skills. As a parent, while going through these new phases you still get scared and anxious.
Our social worker told us that normal eating children might still eat things like, cookies, chocolate, ice cream and other tasty foods while they are sick. Elodie, and other children with feeding or eating disorders will stop eating fully.
I still get unsolicited advice from people around me on how to feed Elodie, I try to let it slide instead of getting into defence mode and explain our situation. Explaining doesn’t help, for instance when people see her eat at the day care they might not fully understand she has issues. Until they know her for a longer period and see certain behaviour, then they make the link with the eating disorder.
By the way, at NoTube we heard that quite a few children eat better at the day care than at home. Our social workers who used to work in day care and primary school for years told me that they have never encountered a young child with an eating disorder, and they couldn’t imagine or believe the extent of the refusal to eat (even nice and tasty foods) before they met us.
This comment gave me some perspective on how other people might perceive us when they aren’t really involved in our daily lives. I am so used to fighting and defending myself, to get the help we need that I felt our situation was minimalized if it wasn’t acknowledged. But, they simply don’t understand if they haven’t walked the same journey. Luckily, my husband is okay with me complaining a bit, so I can cope and digest those situations.
Sometimes I read comments from couples who are not aligned on parenting styles, educating their children, or husbands not helping out etc. At those times, I feel blessed for all the help and mental support I get from my husband. We don’t have other parenting issues besides coping with Elodie’s eating disorder. He does a lot of household chores (the ones I don’t like). We pick our battles and don’t make our lives too difficult.
Don’t be too harsh on yourself. As Dr. Scheer told us, your children won’t remember the spotless house, but will remember all the good memories. Kids should be able to be kids and not adults.