Child,  Eating and feeding disorder,  Family life,  Infantile anorexia,  NoTube

NoTube day 6

Elodie weights 9.7 kg today. My husband was at the medical round this time, and they put her up the scale twice to make sure it was correct. We couldn’t wait until the medical round to check her weight, so secretly we weight her every day in the office when nobody is there. We were happy to see that she didn’t lose as much as we thought.

It’s nice to have an individual session, and a parent with child session in the morning and afternoon, which is a daily thing. I think most mums are with their child most of the times. I really like that my husband gets to spend quality time with our busy bee. Even though it stresses him out a little bit, because she doesn’t want to stay put for a longer period of time. She rather goes walking around, socialising with other families, and moving chairs in the room.

The speech therapist, Stephan Echtermeyer saw that my husband was really stressed about it and tried to calm him down a bit. As mentioned before, the team really looks after the parents as well. Hubby did pretty well managing Elodie, and got complimented. Yay.

Today I just gave half a Nutrini Creamy in the morning as she didn’t want more. After a good heart to heart with doctor Marguerite Scheer we have decided for now to stop giving the Nutrini and see how she does. They can then monitor her weight and see what Elodie does and provide the correct treatment plan. Also she assured me they would never let her drop more than 10% of her weight, and that she absolutely disapproved the last weight loss to 8 kg after the hospitalisation in the Netherlands.

Here I was, crying again. Being honest, afraid, and opening up is difficult for me now. I don’t like to be emotional, it’s something I have never really learned. It tires me more than being angry, which is a more familiar emotion. My survival mode contains neglecting my depression and emotions. Of course this doesn’t solve anything in the long run, I know that. How do you relax and let go of a child who doesn’t want to eat. Even here at Notube, we don’t fully let go of our worries.

This team of professionals who make sure everybody, even the parents stay healthy. I was so amazed that they even observe the parents’ eating habits. The team and the doctor eats with us during the picnics and they monitor our behaviour and advise us where necessary. Since they are with us all day long they really get to see and understand the dynamics of each family.

When the term infantile anorexia was dropped everything fell into place. It was exactly describing our situation. We finally had a diagnosis. For us it was such a relief that her eating disorder has a name. No more people belittling us, we can say she has infantile anorexia. That will surely shut them up immediately. It’s unfortunate that with people, I even mean family and friends. This is something we have heard other parents here say as well. Really nobody understands unless you experience it.

It was difficult for me to let go of our Nutrini fail safe, but I know that if she decides one day to not accept food while walking I also have a problem. We had to start working on her food aversion and infantile anorexia and this was not helping. At least we currently are at the NoTube clinic with very capable people around us. This is the first time since Elodie was born that I actually trust the people who can help her with her eating disorder. They don’t force us, or the child, but work along seeing which approach fits. It’s actually the least stressful approach. What helps us have confidence in them is that they give well reasoned arguments based on years of research. What we hear is what we see as well, and it makes sense.

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