Emil is living in Sweden with his parents and
was born as a healthy and happy child. The first couple of months, he was growing excellently. At the age of 5 months his condition changed badly. View months later he was diagnosed with general fasciitis.
He got hypotonic and was in a lot of pain. He stopped eating and growing. In the beginning of 2013, Emil got a NG-tube and in February 2013, a PEG-tube was placed. He was tube fed since then. In October 2015, Emil was 4 years old, the family participated in the Eating School. Although it was a lot of work for Emil, he finally started to eat at the Eating School in Austria and got weaned successfully afterwards in the telemedical aftercare process. On December 2nd, 2015 he got his very last tube feeding and has been tube free and eating orally ever since.
From the parents
What was your life like before you decided to sign-up for one of NoTube’s programs?
Emil is four years old now. He has had the tube since he was barely one year old. First half year was a nightmare. Vomiting days and nights, we were trying to learn how often and how much should we feed him. His cheek was so irritated of all the patches that we had to change every time he would pull out the tube. We couldn´t put it back by ourselves, so every time he would pull it out, we had to take a trip to the hospital. I must not forget the very first period when he needed nutrition during the nights too! So in first we sat there his father and me, and gave him while he was a sleep. Later on we borrowed this pump that we could program on how many hours he would get how many mls/hour. We have got this plan of how we should feed him from nutritionist, but we were never talking about the plans of taking out the tube, weaning him off it. At first we didn´t think so much about it, until we realized how important that was. We were h appy that he got back up in weight and that he continued to grow.
He has had some good periods with little less vomiting, but more or less it was constant. It has happened lots of times in the car, in the bed, on a carpet, in other people’s homes… One winter he vomited so much in one week that he dehydrated so much that we had to be in a hospital at the end.
After six months he got his ’’peg button’’ operated in. It was a relief. His face was finally looking beautiful again and the smile on his face and a relief that he felt, we could really see it. The good thing (in a bad thing) was also that we could mix him the food that we are making for ourselves and give him into the peg. But the problem was when we should travel. Going in the restaurant was also not very comfortable every time. Not enough problems we have had, but we had to deal with people staring at us when we are giving him the tube feeds. Every other parent in the same situation has to recognize this situation. Going on a picnic was also not so easy, and we love to go on picnics.
Life quality of the whole family was not so good. No one was happy but we didn´t see how we are going to turn around this situation. It was two years ago when I found out about the No Tube, but we have seen that it was really expensive and we thought we should give it a try with the Nutrition team here in Stockholm. We have tried for almost three years, never succeed.
What were some of your most memorable experiences during the program?
The most memorable experiences we have had during our stay in Austria, Gnas, while attending the Eating School with the No tube team were this huge support and confidence we have had. They have encouraged me as a parent and the best thing I have heard is that their primary job is to figure out the parents, as that´s how they know how to work with a child.
I was alone with my son and it was tough, but I have to say that I would never make it without the Team. Nothing has happened in one whole week and I was starting to loose fate, but then, the miracle! Eva Kerschischnik has performed amazingly something that has turned us both upside down. I broke and Emil broke, but then… He has started to eat! It was amazing, almost impossible. We were hitting the walls just minutes before that and while he has being confortable in this new place, with new people, I was being worried about the time we have left to be here. The things that the Team is able to perform with the children are amazing and as a parent I can only say that it was a big experience that has thought me to be a better parent, to see what I was doing wrong, not only with the food related issues, but every other issues in my parenting. I was amazed because I have seen that they are looking at a child as a whole person, and not only concentrating on the food. The tri ck that I apply now to every day is that food and eating is something that we do ok, but there are a lot of other funny and interesting things we should concentrate on, so the eating will come as a side issue. And it does work.
I am so proud of myself that I have chosen to trust this team!
Did you feel that your child received good care during the program and was NoTube’s staff attentive to your concerns?
Emil has had a best care during this program. Eating school was a great place for the both of us. I was feeling safe and confortable 100% for the whole two weeks during the Eating school. Daily checkups with the doctors and you basically live together during this course, it´s amazing. They were also available during the late evenings, weekends etc.
That is the best thing about it, this support and care you get when you are there.
How has your life changed since you participated in the program?
There has been three months since the last tube feed now. Our life has changed drastically. We thought that we were in a safe place with the tube and we couldn’t see how we would have it differently. It is a trap and it leads nowhere. Once we got into it that was it. We were determined and the results are obvious.
Life has being good. We have still a way to go with the learning to eat various foods, but Emil goes up in weight, he is fully sustaining himself with eating and this is the best thing that has happened to us since very long time ago.
If you ask me, I would do it all over again, no regrets, just wins!
What’s the most awesome thing that has happened with your little one since completing the program?
The most awesome thing is that he is not gagging, not vomiting, he is making progress in eating, almost every week some new little things happens with the food. It´s a pure happiness to look at it and still it was not long time ago since we fed him with the tube, and yet the amazing thing is that it feels like it was years ago.
I believe that we have become better parents to Emil, and that this is reflecting on our child positively. We have learned a lot about him thanks to the No tube team.