Will my son ever start eating?

This post is to everyone who can help us – or share some knowledge with us – regarding our son, Vitus’, extreme eating disorder. – But I’m also hoping that this post will reach someone in the New York area who can advice us and help us with all the challenges and choices we are facing in a new country in order to help Vitus in the BEST possible way when we start our new life on Manhattan on January 1, 2016…

So… Our moving date to the States is approaching and to be honest – we are really looking forward to this adventure. As most of you probably know, the main reason for our relocation to the States is our son, Vitus, who has an infantile autism diagnosis. He’s an amazing little boy with so many talents and so many qualities, however, he is really challenged in some ways and it’s exactly these challenges we are trying to eliminate by seeking more and different opportunities on the other side of the Atlantic Ocean…

Even though I have some clear ideas about what and who to approach when we land in NYC, I also want to ask you all – what can help our amazing Vitus? Let me tell you a bit about his challenges…

Vitus has – since the age of 2 months – not been eating normal. He has always disliked having food in his mouth and he has suffered – and still suffers – terribly from vomiting. He also seems to be experiencing an almost constant nausea which obviously makes it very difficult to challenge him food-wise as he will simply just throw up. – And I do NOT want to add needlessly bad experiences in him if I can… Until he was 1 year old he was drinking his food from a bottle – calorie packed energy drink… We tried to introduce porridge etc. when he was around 6 months old but we NEVER succeed and gradually stopped trying to avoid vomiting. Vitus suddenly stopped eating when he was 1 year old – and he didn’t eat for 6 whole days. He was loosing weight rapidly and was extremely close to getting a tube down his throat in order to survive… – Luckily we avoided that and it seems like the only consequence following that dreadful week is a horrible and deeply inherent fear living within his mother… Me…

After Vitus’ hunger strike – and up until this very day – he has been eating in a very special and time consuming way. We feed him 8 times a day – very small portions packed with calories and completely blended. He is gluten, milk and sugar free and mainly eats lots of vegetables, chicken, egg, fish, lenses, tofu, different oils and coconut cream etc. etc. He tolerates NO texture at all! He hardly opens his mouth and if he gets something in that’s not completely blended he either spits it out or vomits. He does not want to eat by himself and it seems like he is not able to handle any food if he is too aware of what he is doing, thus, he only eats while watching his iPad… To be honest – it’s a very tough and horrible situation which is very difficult to see a way out of… However, I really need to find a way and I will do all I can to help Vitus overcome his extreme eating problems…

Two pictures of Vitus just after he started eating blended food…

My heart tells me that Vitus needs a very intense oral programme. I imagine a program that addresses his extreme sensitivity in this mouth and throat – and I believe we need to work on this every day for many months… However, I really do believe it’s possible! Vitus’ sensitivity goes beyond his mouth and throat. He is also very hesitant and often reacts with disgust if I ask him to touch grass, sand or a feather. Basically anything that’s uncontrollable and messy. He hates it and he used to gag when I asked him to touch such things. We have been working very intensely with his sense of touch and it’s a lot better now than it used to be, however, we stil have a long road ahead of us. I will continue to challenge his senses and mature them by working with Vitus every day, but I do believe that we can do a little bit extra… – That we could include something in our daily program that I still need to find out…

I have yet to encounter a case that’s similar to Vitus… I still haven’t met another family who is struggling with the same challenges as us… During our many, many days in the Danish hospital system I have not met nor heard of other kids with the same symptoms as Vitus is experiencing… Most of the kids with such severe eating problems would have a feeding tube. Also, when I ask the doctors we have met on our way – they are not able to give us any advice based on previous cases with other kids… It has been – and still is – extremely frustrating, but I refuse to believe that Vitus is the only child with these kind of challenges??!!

Anyways, some people tell me that it’s really the autism that’s the problem – well – in my world it’s REALLY the eating disorder that’s the problem and I’m going to do everything in my power to prove exactly that.

You can reach me on ditte_brandt@hotmail.com. Thanks…