I hear from lots of parents with children with PKU, one of the hardest thing that they have to deal with is when their children refuse their supplement. This has happened to us too and it was very stressfull. I wanted to talk about our experince so hopefully it will help others.
Keir, around age two, started to refuse taking his supplement (PKU Gel). He would gag, spit it out and cry endlessly. He geniunely looked very upset. I had no idea why he would suddenly stop taking his supplement. My immediate thought was, it was the taste and the texture of the PKU Gel. We were reassured by Keir’s peadactricians and dieticans that the taste should not cause the upset. My husband was with the same thought but I was not entirely convinced and wanted to try a different brand of supplement to see if he would like it better. We tried Anamix Junior. He refused it at the beginning but we perservered and he then really liked it. It went so well that he would remind us when it was time to take it. He took the Anamix Junior from a baby bottle three times a day. In the meantime, my husband suggested that we keep sending PKU Gel to his nursery (3 days a week). To my suprise, Keir was taking his PKU Gel at nursery without any problems. My husband made a video of him refusing it at home and nursery made a video of him feeding himself the PKU Gel happily at nursery. It was interesting to compare. This was a turning point for me and I accepted that it was behavourial issue rather than the taste or texture of the supplement. Everything fell in place from this point and I became less stressed. But when Keir was approaching age 3, we had to think about taking the baby bottle away. He was chewing the teets and breaking them very easily and he was coming near to school age.
I did always wonder when he was asking for his ‘milk’ whether it was more about the bottle than the Anamix Junior (he would call it ‘milk’). I knew taking the bottle away, he would start refusing his supplement again. This made me feel very anxious and stressed. We started offering PKU Gel at home slowly, and gradualy increased number of times he would have it. We managed it so that he would only have one bottle at bed time. We then started offering the Anamix Junior in a cup instead whilst he sat on our lap, reading a story. We finally removed all the baby bottles from our house and Keir was fully on PKU Gel each meal (3 times a day). We do have our occasioanal struggle as he can fuss over how it was mixed and how much water had gone in it or he doesn’t like that particular spoon. We deal with it as any other 4 year old tantrums and remake the gel if it gets thrown or chucked and remind ourselves to keep calm.
We are currently trying to get him to try PKU Coolers. They are so much more practical when he has to go to school trips etc. They don’t need to be mixed and prepared like PKU Gel does. We’ve had not much luck so far. He does not like change but we will get there eventually.
I try to follow three principals;
Stay positive: PKU diet is a managed, controlled diet and this is something that children do not like and will resist. They are discovering their personality and testing boundaries as part of their growing up. As parents of young children with PKU all we can do is keep trying and staying positive. I learnt from my past experience that I cannot show my stress or hesitance to my child as he will pick up on that. It makes things much more complicated.
Help him manage his diet: Another thing that I constantly remind myself is that I must help Keir manage his diet and not manage it for him. This is important as more he understands his diet and has a ownership of it, I hope he will be more likely to stay on the PKU diet in the future. So whenever I can, I get Keir to prepare his food, mix his PKU Gel and weigh his own food. I need to remind myself though, I think naturally I am more drawn to doing it for him.
Tell everyone that he has PKU: I have seen benefits of telling people about Keir’s diet. For example; when Keir was invited to his friend’s birthday party from his nursery, I was nicely suprised that the parents of the birthday boy already knew that Keir had a special diet. Their son had told them some of the ‘free food’ that Keir has at nursery when they were eating together. He was looking out for Keir at the party and pushing fruit in front of him saying ‘Here Keir you are allowed this one’. I have seen his friends looking out for him similarly because they know about his diet. PKU is an invisible condition and it will be very easy to hide. But for this reason, I believe it is more important to share and let people around us know so they can help us to keep Keir on his PKU diet and not stigmatise it and make it normal for him to discuss it as he gets older.