Kate Springer talks with the mothers of children who follow special diets due to allergies and diabetes.
Born in the UK, Tracey Cheung moved to Hong Kong in 1997. A teacher, Tracey and her husband Kevin have two children: Lucas, five; and Indra, three.
Which of your children has dietary intolerances? Lucas has a lot of allergies, not just food allergies, though that’s a big part of it. We discovered this when he was actually three months old. I was breastfeeding and I must have eaten something that triggered it. It started off as something that looked like cradle cap, but it wasn’t. It started spreading all over his face and body. Our pediatrician said he would grow out of it and gave us some ointments. But it got worse, and he was just turning into a big scab, oozing and cracking. He was in so much pain and discomfort. He wanted to be held all the time. Every time I put him down, he would just wake up and cry, which meant that I wasn’t sleeping either.
How did you finally figure out what it was? The baby was in so much pain and discomfort that I just didn’t think it could possibly be normal. A friend of mine, who works in a holistic centre, told me that her child went through the same thing. She gave me some contacts, and one of the doctors was Adrian Wu. Before we met Adrian, I was running around the city with this baby trying to see everyone and anyone, just hoping that someone could help. But as soon as we met Adrian, he said right away it was from allergies and I had to stop breastfeeding because it was me who was passing on whatever he was allergic to.
What did you do next? We put him on Neocate (an amino-acid based infant formula suitable for children with food allergies). It was another stressful time because he didn’t want to take the bottle or drink the milk. If you’ve ever smelled it, it’s really quite disgusting. We covered him in steroids and then wet wrapped him every day, so he looked like a baby mummy. Within a week, we could see a difference. His scabs started going away and his skin started healing. We did the wet wrapping for about three weeks. Then we covered him in this petroleum jelly after the redness and the scabs came off. We continued applying the petroleum jelly after bathing him until he was about three years old.
Did you ever find out what triggered it? I think the initial trigger was that I had eaten a Chinese dish with prawn paste or something similar. And that’s when it all started. After he started eating solids, we kept a food diary and a poop diary, so we could see how he was reacting to each new food and to help us remember. Keeping the diary was the best thing we did because we could see if there were patterns and monitor his reactions. He first reacted to dairy, carrots and lentils, and then continued to react to so much more – he would vomit right away and get a rash all around his mouth.
How is he doing now?
He is five years old now and attends school. He’s a happy little boy most of the time. He’s very sensitive and aware of how others are feeling. He is a little bit obsessive about certain things, he was really into trains at one point and he was so into the MTR that we had to go and stop at every single station so that he could have his photo taken with the sign.
Can Lucas manage his allergies himself? He knows when he feels something is coming on. He is brave enough now that he can tell an adult he can’t eat something because he is allergic. But it’s not just food, it’s also dust and even chemicals in cleaning products – like the product they use to clean the toilet seats at school; every time he sits on one, he gets a rash on his bottom that takes ages to heal. He now has to take wet wipes to school to clean the seat before sitting on it. It’s tough, but we need to teach him to cope because it’s not going to go away anytime soon.
How do you finance the medical appointments and treatments?
The school that I work in offers fantastic healthcare and it covers almost everything. We pay 20 percent of the bill. If you don’t have good insurance, a consultation can cost up to $1,000 even if you’re only in there for five minutes. We’re really lucky because if the school didn’t offer such coverage, I don’t really know what we would do. I am sure we could stay in Hong Kong, but it would be a totally different lifestyle.
What has helped you cope? I remember thinking while I was wet-wrapping him, that I just couldn’t see the light at the end of the tunnel. It’s learning to deal with it, and getting in touch with others who are going through the same thing. There are so many platforms, like Hong Kong Moms on Facebook, friends who always know of someone who can help. Hong Kong is a small place and news of practitioners with a good or bad reputation spreads quickly. There are a lot of people out there who are open and happy to give advice.
Originally from upstate New York, Melissa Brewster and her husband Simon moved to Hong Kong eight years ago. She has three daughters: Gemma, six; Gia, four; and Grace, two.
What was your first experience dealing with food intolerances?
My eldest Gemma is six and a half years old, and we found out she had some food intolerances when she was 18 months old. That really set the tone for our entire lifestyle: we all became gluten-free because it was too much to manage two different diets.
How did you come to realise that Gemma might have some dietary issues?
Gemma was really sick as a baby – always with bronchitis and respiratory infections. She was on steroids, but I didn’t want to keep her on them. I went to The Body Group with Gemma, and they found out that she had intolerances to wheat, gluten, and egg whites. It’s something she would likely grow out of. When she was three she did outgrow the food intolerances, but her diet had been changed already so we wanted to continue that healthier path.
And did you see any changes? When we started taking gluten out of her diet, her appearance changed within a week. She used to have a kind of a gaunt appearance and dark circles under her eyes. People would think I wasn’t feeding her as she looked a little undernourished. But once we took the gluten out, she could better process the nutrients that she needed.
What happened with your second eldest, Gia?
I was gluten-free during my second pregnancy, and we all ate a lot healthier. Gia didn’t have any food intolerances that we knew of, and she was a happy healthy baby. Once she was about 15 months, she seemed really unsettled all of a sudden. She was thirsty all the time. I thought it was strange, but didn’t look that much into it. But then, we were away in Thailand for a holiday while I was pregnant with Grace. My husband was meeting some friends, and I was Googling Gia’s symptoms. The results suggested that she might have diabetes. I thought it was crazy; my husband thought it was crazy; friends thought it was crazy.
And was it crazy?
Fast-forward – and we took her to the emergency room and they admitted her for a bowel obstruction. They did a lot of tests and found out that she had Type 1 diabetes. It was completely new to us. We didn’t have any experience with diabetes in our families or anything like that. So we went through the whole process of learning how to take care of a child with Type 1 diabetes. She couldn’t really talk yet so communication was hard. It’s easier to tell now – she is lively and loud and bubbly, so if she’s not her normal self, then I can tell something is up and normally it is that her blood sugar is low.
How did you learn to manage diabetes?
We would plan out her diet and give her insulin before she eats. She can eat pretty much anything, we just have to adjust her insulin depending on what she’s consuming. I don’t want her to go through life thinking that she has to sneak things, so they have treats just so they know it’s all okay in moderation.
Then what happened with your youngest, Grace?
With Grace, the pregnancy was fine. And then as a baby, she started to get colds that never went away, which was something that Gia had as well. Grace didn’t have the textbook symptoms that Gia did, but there were some behaviors that indicated that she might have diabetes. I didn’t want to believe it. I just thought it was impossible. But we decided to check her finger, and it was a really high reading. We freaked out and called the doctor, who said we had to get her to the hospital immediately.
Was she okay?
What happens with diabetes, is that if you don’t manage it, you can go into hyperglycemia. That leads to ketoacidosis, where your blood acidifies and your body shuts down. That’s actually the state that Gia was in when we took her to the hospital. She was just a day away from dying. That was terrifying especially since the test to determine the disease is so simple and not invasive.
How were you feeling at that time?
She was this precious little thing, and it was hard to accept. But, we made a promise to ourselves when Gia was in the hospital, that we wouldn’t let diabetes run her life, or define our lives. It wasn’t easier to accept this the second time around but we had to stick to our promise. I remember Gemma hugging her and saying, ‘Don’t worry I will take care of you.’ How do you think growing up with more dietary awareness will affect your kids in the future? One thing our kids will know growing up is a healthy lifestyle and they won’t know anything else. So I guess that’s a plus side. I also love to get them involved in the kitchen, even if it’s as simple as making popcorn. My six-year-old loves to read the recipes and delegate whose turn it is to put ingredients in the bowl. They sit on the kitchen floor and watch it bake. It’s all very cute!
Do you have any advice for other parents?
There are some great diabetes support groups for parents, like Youth Diabetes Action where we meet once a month and talk about issues and advice, or maybe you just want to find out where to find syringes on a Friday when Queen Mary Hospital is closed. Silly little things like that. It’s good to have a network of people who understand what you’re going through, and offer advice on everything you could possibly want to know. It’s a sense of comfort as well.