Family Diaries: Meet Serena and JamJam

Serena, mum
JamJam, 4-year-old son

How was JamJam’s feeding at the beginning, and when did he start being tube fed?

JamJam had a nasogastric (NG) tube inserted almost as soon as he was born. We tried breastfeeding but he was aspirating, and it wasn't working. The decision was made that he would have all his feeds via his NG tube. We didn't know anything about tube feeding or how long it would last.

In those early days, I was pumping breastmilk and gravity feeding it through the NG tube, holding a syringe up above JamJam in the middle of the night. Sometimes I'd doze off, the milk would spill, and I would be traumatised because that milk was so precious. It was so tough – we tried to find different ways to hold the milk. We didn't know anything about a feeding pump, or even that it existed. It was never introduced to us.

JamJam was NG fed for 18 months, first with breastmilk for the first 10 months, and then with a prescribed formula which we then fed through the NG tube too. We started to really push for him to have a gastrostomy after 12 months. It took a further eight months for him to have it fitted. During the operation, the surgeons ran out of 14 French tubes (the width of the feeding tube), so they were going to have to give him a 12 French, which is smaller. That was frustrating, but the gastrostomy tube was liberating and meant we could blend food for him. We started the transition to a blended diet about four weeks later.

How did you start feeding JamJam a blended diet?

We started off with really simple soups – maybe carrot with a bit of garlic blended up. Under the guidance of our healthcare professional we slowly introduced him to other real foods, and it was revolutionary for us. They had to be diluted to go through the tube so we were concerned about his nutrition, but he was gaining weight. It was exciting creating different meals, having so many options and being in control. When we went to restaurants, we’d think about what we might order and do something similar for him. It was amazing. Now he has a mini button and that has been a game changer for us. We don't have to worry about the tube getting caught in something because we can take it out when we’re not feeding. It's now a 14 French, which is a larger tube, and JamJam's able to have so many different types of food.

In 2020 JamJam’s epilepsy got really bad, and we were out of options having tried so many different medications. He was having multiple seizures every single day which dominated his life. A friend had sent me some information about the ketogenic diet, and I thought that was what we needed to try. We contacted our neurologist and JamJam started the ketogenic diet in January 2021. Within three weeks his seizures went from constant to approximately 35 to 40 a day which was amazing. Now he has maybe one or two seizures a month, which is a huge transition, and we put it all down to the diet.

How do you ensure JamJam’s diet is ketogenic?

We create meals for him using an app. We have to be very specific about the ratios of fat, protein and carbohydrates JamJam is allowed. The diet is incredibly high in fat. Once we've created a meal, we prepare it which is very time consuming. We measure everything to the exact amount, cook everything, blend it in unsweetened milk alternatives like coconut or almond milk with no added sugar. Then we portion it all out, cool it down immediately, write labels with specific information for our nurses, and freeze it. It takes us 3-4 hours to make nine meals which will last three days, and then we do it all again. It's a lot of work but it's worth it because we see the results.

JamJam is vegan because we feel that’s the best diet for him, even though none of us are vegan. His breathing and respiratory issues have been so much better now that we have greater control over his diet. It's managing his epilepsy, but it's also helping to fully nourish him. He has lots of lentils, chickpeas, chia seeds, flax seeds, almonds, coconut oil, extra virgin olive oil; a range of healthy foods. Lots of fresh vegetables and berries. It's all very nutritious. I think that JamJam has the best diet out of everybody in our family. He doesn’t refuse to eat some things like his brother!

How do you balance volumes of food and water through the day?

We're very specific about when JamJam has water before and after meals, because we have to be careful of vomiting. Feeding him takes up a large portion of every day so there are pros and cons. It's great that he can be fed while sleeping, like an amazing superpower, but it is really time consuming. It took us quite a while to work out what works best for him – what times, how much water, how much food. When we first started on the ketogenic diet, we gave him the same volumes that he’d had of typical blended diet, but it didn’t work. He was vomiting. We realised we had to reduce the volume because the fat was too much for his body.

How is his weight?

His weight is really good, which my back and my arms remind me of all the time! I remember when he was first born, a doctor in intensive care came to speak to us about his condition. She said he would fail to thrive and would never gain weight. I thought to myself, ‘I'm not accepting this’. Now, he's completely different to everything she said. He's probably got the best weight out of all our children. If anything, we are more concerned about him being overweight. We want to make sure that he's moving enough, that he's getting enough exercise.

How much professional support have you had – when you first started a blended diet, and then with your transition into a ketogenic blended diet?

We did it on our own at the beginning because it wasn't something that was supported. We reached out and got advice from other people that had done it – Facebook groups and friends who were parents of disabled children. They were our strongest support. Our dietitian did look at our meal plans to see if they needed tweaking from a nutritional point of view, but it was very minimal input. During hospital admissions, we were told that if we were going to feed him blended diet, we would have to sign a disclaimer and that it was all at our own risk, which we did. We would be travelling into hospital with our blender. Our blender is the best thing ever. It's brilliant. It hasn't been food that's blocked his tube, it's medication.

The ketogenic diet has been a completely different thing. Our dietitian created meals for us initially. She talked us through everything. She looked at the types of foods he would eat in a typical month, and she incorporated them into a ketogenic diet. The support was, and still is, amazing. We can call her with any concerns. She advocates the use of natural foods and really supports us.

*While Facebook groups offer like-minded support, always consult your dietitian or health care team for professional guidance.

Do you change the mini buttons yourself?

We do. When JamJam had an NG tube, I would change it and I found it quite traumatising. I would always worry that I might put it in the wrong place. It was very uncomfortable for him, and I wanted to get it passed as quickly as possible. With the mini button, there's less worry and it's a lot easier than an NG tube. We've had emergencies where the mini button has been pulled out in the middle of a car park, but thankfully we have a spare and we're able to manage that situation.

What are the main benefits of blended diet for you and JamJam?

Food is really important to us. It‘s a big part of our culture. Every family get together, everyone's excited about food and it's so nice to be able to have JamJam be a part of that. To have that choice, it's amazing. There are times where we feel that we have to deviate from his ketogenic plan slightly if he's unwell. We have a special formula which we call the flu bomb, full of healthy, immune-boosting foods and we will give that to him. We like to try to help JamJam with food if he's unwell.

There are so many limitations with JamJam. There are so many things that we can and cannot do. But being able to manage his feeding, which is really beneficial to him, is really vital. I don't care if it takes me six hours to produce meals which last a few days. It's worth it because I see that he's thriving. It makes me feel good as his mum. It can be daunting but there's so much support out there. You don't have to do it alone. Other parents have been our greatest support and we're so grateful that we can tube feed.