Elodie 24-30 months: autonomy and recovery

After everything that’s happened in Elodie’s second year, we tried to reduce the attention the topic of “feeding” gets. It was extremely difficult, because with a BMI of 12 (extremely malnourished) at the beginning of the year it was impossible to let go. She had no body fat or reserves at all, it was really hard for me to look at her sometimes. You are immediately confronted about the fact that your child doesn’t eat normally. We’ve been actively working on lowering the food emphasis ever since we were at the NoTube EAT Campus in Graz.

Despite a big setback the first 3 months of this year, where she was sick all the time, we are not force-feeding her all day or trying to get food into her whenever possible. We try to minimalise the risk of her getting sick, because it disrupts her eating development for a while. That’s why we stopped taking her the the play sessions at the day care. This was the main reason for her getting a cold.

Medical Nutrition
Elodie (2 years old) is still receiving calories from medical nutrition. The quantity depends on her weight and food intake, and it’s the only ‘meal’ where we need to put effort in order to give it to her. We changed from the Nutrini Creamies to NutriniDrink and Pediasure Compact drink, and it’s 300 calories per bottle. She drinks or takes it sip by sip, so it can take quite a long time for her to finish. Usually she is distracted or playing, and I will interrupt her to take a sip, then she can continue again. The things she currently eats are not necessarily very nutritious, but we are thankful that she is eating. The medical nutrition provides vitamins and minerals which her body needs to grow healthily. We are so grateful that medical nutrition exist! I don’t know what we would do without it.

I believe that adding the extra calories has kickstarted her metabolism, and she feels hunger more. Even though her body is getting more calories we see she still eats the same amount orally. We make sure that we give the medical nutrition at the mealtime she is least interested to eat. Finally, after a few months of NutriniDrink we see that her weight is out of the danger zone.

Since giving the medical nutrition via bottled drinks she looks quite happy and energetic. She even grew almost 10 centimetres in the few months of giving her the NutriniDrink and Pediasure. So I believe she really needed to nutrients to grow and develop.

Live off the air
I still can’t believe that local doctors were saying that being severely underweight is not a problem and that she can live off the air. Everybody knows how teenagers and adults can harm their bodies with Anorexia Nervosa, so how can it be okay for a toddler? It’s incredibly frustrating to not be taken seriously by medics, to be minimalized and worse to be blamed for the eating problems. This has caused a lot of trauma and insecurity.

NoTube
NoTube has been great at therapy for parents too. We keep on repeating that the feeding disorder is not our fault (unlike what our local medics wanted us to believe). There was a mum whose 4th child has feeding issues, so that’s definitely not due to being an inexperienced mum.

The NoTube pediatricians had meetings with our local medical team to update on Elodie’s status and to be aligned on the way of working and the way forward. So we were happy with the flexibility NoTube was showing, as we got lots of heart and headaches from our medical team in the past. The team was very impressed with NoTube’s work and how only their therapy is working for Elodie. They also saw the positive influence NoTube had on my mental state. I wasn’t breaking down that often, and sometimes I could actually start seeing my child as a little person instead of constantly worrying, having panic attacks and anxiety.

Finally, there is hope, hope that our lives will get better. That we can overcome this. NoTube’s 24/7 guidance and coaching was exactly what we needed. Those daily sessions are so valuable in making progress.

Eating development
We see that she is trying to eat different kinds of foods, sometimes she takes a bite, and sometimes she doesn’t. There is no logic. She can eat really thin cookies, the cookies for children (starting 6 months) which are quite thick are too difficult for her to eat. Bread and cake is still difficult for her, and she likes eating in front of the iPad or TV. We do occasionally need to remind her to eat when she is watching something. Which is not a problem to us, if this relaxes or distracts her and increases her willingness to eat that is fine for us. It is still about learning to eat. Besides, how many adults currently eat their meals without checking their phone, reading a newspaper or watch television?

Recovery journey
Our little girl currently likes to eat a variety of pasta, ice cream, sweets, snacks, and sometimes out of the blue she eats something else like fried rice. When I try to give her rice a few days later she doesn’t want it anymore. I don’t understand it, there is no logic, but I try to let it go and not let it get to me. She likes the thin fries from the McDonald’s, and raw salmon filet dipped in soya sauce. She takes a few tiny bites of food herself but most of the time I will need to feed her a bit as well, which she tolerates. It is such a big difference when compared to last year, where I could only feed her while walking outside or when she was sitting on her high chair on the pavement.

Unfortunately, the amounts she eats on her own are still too little for her to sustain herself. She doesn’t eat like a ‘normal’ eating child, the few bites she takes on her own are just enough to take off the edge of being hungry. But seeing the major food aversion she had last year this is an improvement.

Selective eating disorder
We understand that she has a selective eating disorder and her mouth area is really sensitive, so we are not surprised that when we change a food brand she doesn’t like it anymore. So, if we know that it is a seasonal product we buy a lot of it. Also, when in the supermarket I secretly touch and squeeze foods to see if she is able to eat it. Generally, I buy everything that she wants when we are in the supermarket. We have to throw away a lot of food because she doesn’t eat it, or it is not edible anymore after she is done with it (sensory playing). But at least she is trying it and showing interest. I even buy candy of which I think she would like it from Amazon US and UK because it’s not available in the Netherlands.

The extreme food aversion she was showing last year is reduced, and she is noticing her hunger cues a bit better. She isn’t hangry that often any more. The infantile anorexia is still there, so it’s still a long way to go. But at least there is hope and progress.

Sensory food aversion
We also found out that Elodie has a sensory food aversion. The heightened sensory issues are trigged by the qualities of certain foods such as taste, texture, colour, temperature and smell. She will refuse to take a bite or spit out the food, or it can escalate to gagging when it’s in her mouth. Luckily it’s not that bad that she will vomit at the sight of certain foods, we have heard about this from a parent at the NoTube eating school.

We let her play with food, just touching it is already a good step. She can make a mess all she wants. So it still takes us a lot of time to clean the kitchen and our living room but cleaning because she is interested in food is so much better than cleaning because she is refusing and throwing it away. She doesn’t necessarily need to eat at the table in the kitchen, she is allowed to eat wherever she wants. We have noticed that she likes to eat in bed, maybe there isn’t much else to do because there are no toys around, and it’s a safe place for her (no eating trauma’s). Eating in bed was a big no-go for me, I hate the feeling of crums against my skin, and don’t even mention the food stains. I have learned to let go, and listen to the needs of my child. If this place makes her feel better about food, so be it, it’s just a bed.

Feeding
I still feed her while in the bathtub because she is quite relaxed while bathing and sometimes even takes food from the plate herself. If she allows me to feed her during mealtimes when she isn’t eating herself, I will do that. If she refuses, I stop. It’s really difficult, especially is she hasn’t eaten all day. My anxiety will rise up, and I will be afraid that she will never learn to eat properly.

A real friend
One of my best friends, I wrote about her in my previous blogs (who has a child with rheumatism) sent me many videos of her children eating. Sometimes this was really helpful. One time Elodie saw them eating strawberries, and she decided that she wanted to eat it too. We immediately rushed to the supermarket to get it for her, and she ate 2. This was a real win for us.

Eating out
We used to love going out for meals before we had Elodie, but due to all the feeding problems this was not possible anymore. While at the eating school we found out that Elodie actually enjoyed going out for dinner. We would take her own food with us, and she would also try new things at the restaurant. This also gave us new insights in what she likes to eat.

NoTube recommended us to go out for dinner or meals, so Elodie could see that eating is fun and social. For her, it didn’t necessarily have to be about eating food, but seeing and experiencing it’s already a good step. But the most important thing is that we love going out for dinner, and to be able to do this is amazing, some nice quality time together.

We found out that Elodie likes haute cuisine restaurants. I think that the dishes looking like little colourful artworks, and the interesting and intense flavours tickled her interest. The atmosphere in these restaurants is nice, and it isn’t too noisy or crowded. Also, customers here really savour their food. Well, we certainly can’t complain because we love fine dining.

When we go to crowded, noisy places she gets really distracted and want to walk around or play. Also, she seems less interested in the food. Looking back to the sensory issues she experiences this makes sense.

Some people don’t want to take their young kids to fine dining restaurants, but when they have a high chair children are welcome. We eat quickly, 5 courses in 2 hours, so it doesn’t take too long. In between courses she can walk around if she wants. So we make sure to choose bigger restaurants or restaurants which have a garden. To be honest, our table and the floor often looks like a gigantic mess afterwards, for which we apologise. Yet all staff we have encountered in fine dining restaurants are always incredibly kind to us and to Elodie. We actually feel so much more comfortable here than elsewhere.

Because of this I decided to also write about our fine dining experiences with Elodie under the ‘restaurants‘ page on this website.

Triggers
Thanks to the medical nutrition she gained weight and doesn’t look that severely malnourished anymore. The weight gain reduced my anxiety and I feel that I can start breathing a little. However, new comments also triggered me. ‘She is looking better, now you can forget about the past. I see she ate a little, that’s great you don’t have to worry anymore. She will definitely learn to eat, it will just take some time. Oh, it can’t be that bad, she looks alright. She looks better now, don’t worry about it.’

You see, it’s not alright, she is not eating like a normal child. She will not be alright magically. We still have to put loads of energy in teaching and stimulating her to eat. Our worries are not over, the anxiety and PTSS is still there. Not only for me as a mom, but my husband experiences this too. People who haven’t walked this path can’t relate to what we have been through and what we are still going through. Those ‘cheer you up’ comments trigger me because it takes lots of energy to teach Elodie to eat. Every single thought has to do something with food. What shall we eat, what options do we have if she doesn’t want it etc. When we go out of the house my bag is packed with lots of different sweets, drinks and food, so she has some choice. She won’t eat something from the local cafeteria, not even candy or chips. So I have to prepare a lot before we go out. That’s okay, I can deal with that. But don’t give me those comments. They are not helping, it doesn’t make us feel better, as she is still learning to eat. We are not drowning all the time anymore, but we are not thriving, we are surviving. Just showing some empathy is good enough.

Infantile anorexia
Being able to say Elodie has infantile anorexia has been a relief for us. We don’t have to defend ourselves and people won’t compare her to their own children who have bad days. Infantile anorexia/extreme food refusal or my child is not eating vegetables or skipped dinner is not the same thing. Unfortunately many people are still very judgemental and that’s why I still don’t meet up with friends. You still get comments about your child’s eating habits. Or their children are not allowed to eat candy or chips, and can’t watch the iPad while eating. It’s difficult to explain why our kid is allowed to. So meeting up becomes a stressful and uncomfortable event.

Even though COVID-19 is terrible, the lock down was good for us. We didn’t have to find excuses to not meet up, and we were already used to being isolated. Last year we were saying that nobody understood how it felt to be confined to your home because of our child with a feeding and eating disorder.

It takes a village
Our parents and my aunt have been helping us wherever they can. Mostly cooking for us, or helping out with household stuff. The variety of food gives Elodie a bigger choice in what she wants to, or might, eat. Besides cooking is not much fun if your child won’t eat from it.

When you are so burned out and depressed every small task seems like a big project. We outsource whatever we can, so we can focus on keeping ourselves sane and provide therapy for Elodie. Taking care of Elodie takes so much time and energy that we tend to neglect ourselves. People who haven’t been through this won’t understand.

Eating school NoTube
The company I work for has offered to contribute to a part of the costs if we wish to go NoTube again. This had been on our minds because Elodie liked being there, playing with the kids and being around food positively. She doesn’t go to day care, they wouldn’t accept her because of her eating problems. Many families only go to NoTube once, and usually it is enough. However, there are also parents who do to the eating school or the net coaching tube weaning program and then as a follow up do the learn to eat program.

Extra therapy for us as parents and hopefully accelerating Elodie’s eating development sounds like a good idea. Maybe we could gain more new insights on our current situation. So hopefully we won’t be in lock down anymore during the summer, when we plan to go again.