The last 12 months have seen many changes in M. Some were the physical ones we were hoping for – improved health, weight gain and his symptoms disappearing – and some were an unexpected bonus on an emotional level. When I offered to write the article for PINNT, it was important for me to discuss with M whether he was happy for me to talk openly and honestly about our experiences. Both he and G know that I have been writing my blog for the last 3 years and are fully aware that I protect their anonymity throughout my writing. This article was going to be something very different as I would be using our real names and providing photos of M to be included in the magazine. To my surprise, not only did he give me the go-ahead, but he also asked if he could jump on the family writing bandwagon and include his own thoughts about his year with a NG-tube. For me this showed a real development in his attitude about his EGID, one that reflected a maturity I had seen growing since the tube was passed in 2014. From producing his video for National Eosinophilic Awareness week last May to the multiple presentations at his school and now this eagerness to share his opinions, M has started to grow up and slowly come to terms with the reality of his life with a chronic illness. This is what he had to say:
Living on EN – The patient’s perspective (child)
My name is M, I’m 9 years old and this Christmas will have had my NG-tube for a year. My Mum and Dad and my doctor made the decision for me to have a tube because so many foods were having to be taken out of my diet because I have EGID (Eosinophilic Gastro-Intestinal Disease) and multiple food allergies. When I first found out that I was going to have a NG-tube, I felt upset because I didn’t think that the tube was going to make me feel better and I was very worried that I would be teased at school about it.
The first 8 weeks were very difficult as I felt angry and had several melt-downs as I got used to my tube. Christmas was tough because I couldn’t eat anything and I missed having turkey, Christmas pudding and mince pies. I was jealous that my friends and family were able to eat as I really enjoyed eating lots of foods. When I had my birthday a couple of months later, my Mum made me a special cake out of polystyrene cakes and decorated it to match my Cluedo-themed party. My friends thought it was brilliant and the best thing is I got to keep the cake!
At school, all of my friends are very supportive, they don’t tease me and now don’t seem to notice it. Some say they have even forgotten what I look like without it! Last summer, my classmates decided to wear a 2.5kg backpack for the morning so that they could understand exactly what I go through each day. The whole class did it as well as our teacher and the other teaching assistants.
Twelve months on, I feel much better both emotionally and health-wise. During the first few weeks I didn’t feel very sure about how I would cope, but now I feel confident about having it in. I would still prefer not to have it, but I don’t mind it so much. The first few tube changes were hard, but I’ve become an expert and can now have my tube changed in less than 5 minutes – I even take my old tube out myself.
If I had to give some advice to another child about to have a tube, I would say don’t worry because it’s not as bad as you think it will be. You can do practically anything with it and it will help you feel a lot better in the long-run. My tube doesn’t stop me doing anything and in the last year I have continued to play my cello, performed in a dance display and have even been given my first modelling job.
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