Our family and my employer saw and heard the significant improvements Elodie had made the last few months since the NoTube Eating school. Most importantly, they saw the positive impact it had on us as a family and our mental health. They offered to contribute for another NoTube Eat Campus if we wanted to go again, so her eating progress could be accelerated. For us this was an easy choice, we would rather go to NoTube again than go on holiday for instance. Elodie learned so much since the last time, she had so much fun, if she would only try a few new foods we would be happy already.
Whether we were able to go to NoTube again in July was unsure until a week in advance. So it was quite an exciting period. Our KLM flight tickets had been cancelled multiple times. Also, instead of flying to Graz directly we had to go via Vienna, as the Graz airport was still closed.
Just 9 months after our last trip to Graz, the world has changed so much. Who would ever think of a global lockdown due to a pandemic? It’s like the stuff you see in movies, not what you go through in real life.
Travelling with a child with an eating disorder takes so much work. She had her own extra large suitcase with food of which we know that she likes, many extra clothes because of the many changes when she eats messy. We also got to take a little suitcase (free of charge) with her medical nutrition. I feel more confident packing everything since it was the second time we were going abroad. Many families go by car because of all the luggage and hassle, travelling with a tube fed child isn’t easy either.
We spend the night before the flight at my aunt’s house in Amsterdam. This was very convenient because the flight departed at 9 o’clock in the morning. We were lucky both times when we were travelling abroad to NoTube that we could stay at my aunt’s, because we arrived 3 hours later than planned. KLM wouldn’t wait for us, we will need to practice that in the future.
We had so much luggage that my husband had to drive twice, for your information we have a sedan. That’s something we will have to work on as well, or buy a bigger car. Isn’t that a great excuse to upgrade to a SUV?
We decided to stay in Vienna for a few days, so Elodie could settle down a bit before travelling to Graz. She lacked quite a few hours of sleep and flying was quite the experience for her. She slept a bit in the plane, and in the apartment in Vienna she immediately walked up to the bed after we unpacked. This time we took her pram with us, and we are so happy we did. It made our life so much easier.
This was the first city trip we could enjoy. Elodie was eating quite well, trying new things. Sometimes we would walk by some shop or restaurant and she would point at what she wanted to eat. There was an ice cream shop around the corner, so we ate lots of ice creams. She would try new flavours and what she didn’t like she would give to a homeless person. They didn’t mind the mini bite she took and were quite happy with our food.
We took her to fine dining restaurant, (our guilty pleasure) and she did very well. Elodie tried new things like mashed potato, soup, ice cream etc. We know that we can spend around 2 hours in a restaurant before she gets bored.
Next to that we also went to Schonnbrun a few times. I just love the history (I know it’s tragic too) and it’s so beautiful. We took some amazing photos there, and there was hardly anyone photo bombing because there weren’t many tourists.
Due to last minute travelling I didn’t get the time to arrange our trip from Vienna to Graz. I was assuming we could get a GoOpti again. While in Vienna I was trying to arrange it and then I found out they don’t do that route. Then I wanted to get a rental car, but on Sunday the shops were closed and all of a sudden it was decided that a Formula 1 race was going to happen in Vienna. We found out on Monday that all cars were rented out, the only one we could find was a sedan for 1500 euros. That was like 10 times more expensive than usual.
We could travel by train, but that would be so cumbersome with all the luggage and a toddler. Oh my, I was so stressed out. The day before travelling and I didn’t have anything planned. Luckily my parents in law came to our rescue and paid a taxi for us. They didn’t feel that travelling by train would be wise.
So, lesson learned, plan everything well in advance during a pandemic, no… always.
Back in Graz
Being back in Graz felt strange and bitter-sweet. It brought back so many memories and especially feelings. Being back at the supermarket and streets where we were feeding her while walking. I had moments where I really had to stop myself from crying because I would feel all those emotions again, the anxiety and worries feeling so incredibly powerless and broken. Thinking: how will we ever overcome this, when will we see the light, when will we have a normal life, will we ever have a normal life?
On the other hand, being back here also made us more aware and appreciative of the steps we have made as a family and how much Elodie’s eating progress has developed thanks to NoTube. How grateful we are that they exist in a world where medical professionals have no idea how to fix eating disorders in children and rather put a tube in them instead of working on the root cause. At least, that’s our experience and that of the many families that we met here.
Taking steps with daddy
Elodie was taking quite some steps in the weeks before the eating school. My husband was on Corona leave and she was eating ice cream, sweets, and Serrano ham with him on the couch in the living room. They had their own eating rituals. My husband being at home fulltime was good for her eating development. He also developed, he gained 3 kilos in a few weeks. I think she responded better to eating with him, because he is more relaxed. Whereas I, as a mum, am more fixed on intake, calories, quantity etc. It’s something that has become rooted after all the horrible experiences we have had.
Dr. Scheer would be proud, he said that if we wanted Elodie to gain weight, we had to gain weight ourselves. This time we were also scared to go to NoTube again, to leave our new routine at home. What if she has a big eating relapse, what if she won’t eat there, what if she won’t eat anymore when we get home?
Second time at NoTube
We were lucky that we got financial support from our family, my employer and the insurance company. This covered our therapy costs, and gave us the possibility to go to NoTube Eating School again. It’s a choice you have to make, do you go for the family holiday or do you give your child a chance at normal eating and a normal family life. For us, it was an easy choice, seeing the steps Elodie had made after the first eating school. If our life could get back to normal even faster, it was definitely worth it for us. Our experience with NoTube were fantastic, it was a lifesaver, and Elodie loved it at the eating school. You get all 3 meals at NoTube and you have activities and workshops all day, so it’s similar to a ‘eating holiday’, that’s how I called it. Going to NoTube again accelerated her eating development like we had hoped.
“Onze zorgverzekeraar heeft uit coulance een substantieel bedrag vergoedt voor de eetschool van NoTube (hier hebben we veel werk in moeten steken). De therapiekosten en onkosten kan je opgeven bij de belastingaangifte. Dit bedrag kwam al uit op de helft van de therapiekosten.
Vergeet dus niet de kosten, accomodatie, en reiskosten voor de NoTube eetschool op te geven bij je belastingaangifte. Dat kan nog met terugwerkende kracht.
Mocht je vragen hebben dan mag je me altijd een bericht sturen”
We were still not focusing on bigger volumes of food, because that will take more time. Eating bigger quantities is what ever family wants, but it takes time, good guidance and patience. Especially the correct type of medical guidance. We have been through hell because of incompetent local medical professionals and pediatricians.
At home she started eating but the variety was still limited. This time at NoTube she tried other flavoured drinks, ice creams and even started eating from the NoTube meals, so ‘real’ food! We were very happy seeing this. That’s such a gigantic step! With NoTube’s personalised therapy Elodie has visibly improved. Dr. Scheer went out of his way to help us, and we really appreciate it. NoTube’s team is wonderful.
Dr. Scheer gave me the biggest compliment while we were there. He was happy to see that I was smiling more often, took care of myself, got my nails done, and looked much better in general. The previous eating school I could only cry all day long, and I was a massive wreck.
NoTube Eating school day 1 (chapter 2) Read about our second eating school journey.
After the successful eating school we planned to do another city trip. We were pretty looking forward to going there after seeing that Elodie was actually doing really well the last weeks. Going to new places is exciting because you don’t know the impact, will she eat, try new things, refuse, there are many things that can go wrong.
Last year we went to Ljubljana after the first eating school, and that is actually quite a blur in my memory. We weren’t in a good place, and you can’t enjoy a holiday if you are not feeling well.
This time we choose Budapest because it is relatively close and has many fun things that we could do. There are many restaurants (fine dining too), and it’s not a very expensive city.
Elodie loved Budapest, and we did too, there are many playgrounds and historical places to see. We ate out a lot which she enjoyed, she would try something new every time and point at food at shops if she wanted it. She also ate lots of fries. It really was wonderful to see.
We were dining at Stand Étterem (a Michelin Star restaurant), and one of the older male guests came to us and told me how cute and well-behaved Elodie was and that it was a delight to have her around. I got quite emotional hearing this. That moment was one of the highlights of this city trip.
After all we have been through I have got quite insecure about many parenting aspects. Just a year ago Elodie got hospitalised because she didn’t eat nor drink, she wouldn’t even sit in a high chair without going totally bananas. Local medics continuously blamed our parenting for the troubles we had. We are still getting help from social workers regarding this aspect, and I am on the waiting list for EMDR therapy.
I’d say that we are currently the most hands-off and relaxed that we’ve been during the last 3 years. Limiting time is spent on food, no more running after her getting her to eat, and if she indicates she does not want to eat that’s fine. Right now she has the biggest degree of autonomy she’s had so far, to allow her to learn to self-regulate. Provided her weight & self-regulation keeps going in the right direction.
Lately we found out that it helps to ask her to smell a new food, this works better than asking her to try it. She has tried more things this way. Sometimes when she wants to play with some toy or play games, I will tell her to take a bite of something new first. Occasionally she will be like: this is actually pretty good food, I like this. Whereas otherwise she would never try it.
We still follow Dr. Scheer’s advice to go out for dinner, and Elodie loves that. She will always try something new when we are at a restaurant. She ate lobster soup, cream mushroom soup, chips, bread, special flavoured butters, puréed potatoes, and alcohol-free cocktails! Isn’t that amazing. We love eating out, so having our little toddler with us and seeing her enjoying it is wonderful.
These little things in life can mean the world to struggling parents. Because honestly, only a few friends and our parents understand what we have been going through and how draining it is. It’s something only people who have walked the same path really comprehend. So many well meant comments, or unsolicited advice have triggered me that I was hardly speaking to anyone anymore.
There are things that we still have to be careful about. For instance we can’t let her get too upset or let her cry for a longer period, if that happens she will vomit. She is not manipulating (like the local pediatricians said), her mouth and throat area are really sensitive and we can’t let her vomit too much because it will retraumatise her. Besides, nobody likes to puke.
Mild and responsive parenting
This is also why conventional medics can’t help us. They will tell you, just let her cry a bit, it’s okay. Or, she is manipulating you, you shouldn’t oblige. Punish her if she isn’t behaving normally at the dinner table. But our situation is different because of her eating disorder. There are many other issues resulting from her eating problems, which they don’t understand. Those advises are damaging and traumatising, they don’t work for children with eating disorders at all.
Next to that she is a very sensitive girl, and we really observe her needs and feelings, and respond accordingly. We see that she started to flourish since doing that. We are not being pushed over, but we use a mild and responsive parenting method. It was one of our take aways from NoTube. Like with eating, force feeding doesn’t work with Elodie, it traumatised her and made matters so much worse.
I grew up with a Chinese authoritarian parenting style, and it did so much damage. When I look at my friends who grew up the same way, all of them suffered, some more than others. The only Chinese friend I have who has a good and trusting relationship with her parents, grew up with a mother who had a more mild parenting style.
My mother is doing a bit better, and is trying to understand our way of parenting. Which is progress, especially seeing the culture which she is from. It will take time, and many ups and downs. Due to Covid we can’t meet up a lot, so it’s a good way to heal ourselves and slowly find a new way of connecting and communicating that isn’t destructive.
Cultural differences are quite a challenge to tackle under normal parenting circumstances, add ARFID and infantile anorexia to the equation and it will become incredibly complex. Trying to manage your child, your parents, local medics, etc. it is a lot!
Variety of foods
Elodie is now drinking different flavours like, orange juice, apple juice, raspberry juice. A few months after the eating school she even started drinking milkshake, and would ask for it herself. She has been indicating that she is hungry and that she wants food, this is something entirely new to us. At almost 3 years old, 4 months after the eating school she actually ate half a children’s sized pizza. That was amazing, and it doesn’t happen every time she gets a pizza but it does show that she can enjoy eating. She eats corn with extra butter and salt, noodles, tangerine, fried rice, soups, read salmon, chips, and sushi to make a few. That’s such a big difference when compared to the 3 peas she ate after the hospitalization in the Netherlands and before we went to NoTube. We do notice she is a lazy eater and sometimes wants to be fed. But at least she allows that now.
I am sure she would make this progress without going to the second eating school as well. But going there again did accelerate it, and helped us as parents too guide her through this new eating phase, to stimulate her, and to let go more. Also, we were such a wreck when we went to the first eating school, I was severely depressed and could only cry all day (no joke). The impact of a non eating child on your mental health and on your family is indescribably big. This time we were able to smile and laugh. Elodie was best in class, and the other parents told us that they hoped that their child would soon eat like Elodie as well. She was actually a role model and a symbol of hope for the other families. For us to actually really see the difference between our life now and then gave us the closure that we needed. The second eating school was the end of a chapter.
Our own little supermarket
We talk about life post and after NoTube, because NoTube has been such a defining point in our lives. After the second eating school we put an Ikea Kallax closet in our living room. It’s full of food like sweets, drinks, chips, biscuits and whatever she decided she wanted to have from the supermarket. Our guests always tell me that this is a child’s dream and that they have never seen so much food outside of a supermarket.
We see that Elodie will take out whatever she wants to eat or drink during the day. I think she will have lots of friends in the future who want to come to our house.
By the end of the year, Elodie was eating bigger quantities. During mealtimes she could eat 3 plates of macaroni, half a children sized pizza, quite a few pieces of baguette with compound butter, an entire ice cream, bowl of soup, Chinese noodles, various sorts of pasta etc. She also wants to use utensils like us which is super cute.
It is wonderful to see, I enjoy watching her enjoying her food. One and a half year ago she would only eat 3 peas a day, would vomit regularly, and had lots of trouble with flavours and textures. Now she will eat a much bigger variety and even bigger quantities. During our second NoTube eat campus we didn’t think about bigger quantities yet, but it happened!
After the second NoTube Eat Campus in Graz we felt more confident to go outside and do fun activities. We were at playgrounds almost daily, went out for dinner, and met up with friends. Last year I looked milky white during the summer, this year I managed to get a lovely tan.
We have come a long way, and our situation feels more normal (if we don’t compare it to regular eating children). We are more stable as a family and are more positive. That’s priceless.