Cork mum Louise Sheehan tells us what life has been like since her son Luke — then three years later his twin Michael — were diagnosed with diabetes, and how they have learned to face their illness as a family
Luke Mullins was first diagnosed with type 1 diabetes in 2014 when he was seven. “It actually all happened very quickly in our case,” his mother Louise Sheehan recalls. “He was peeing more than usual, he was very thirsty and he lost weight very quickly. I made an appointment with the GP and the following morning he was just listless.”
So noticeably did Luke’s symptoms present that his teacher had sent home a note that day saying he was not his usual cheerful self. “He didn’t have a temperature, or any of the normal things that a parent would be aware of. Diabetes wasn’t on my radar; it’s not something I knew anything about,” Louise adds.
Luke was immediately admitted to hospital in Cork, where the family live, and it was discovered he was suffering from DKA (diabetic ketoacidosis). “He came around very quickly; they got fluids into him straightaway and started immediately with his insulin. He was in hospital for a week, but really the week in hospital was to educate the new patient and the family on how to deal with the situation,” Louise says.
Now 14, Luke, who has an identical twin, Michael, handled the situation remarkably well, given his age. “When your eldest child is seven, you think that they’re very grown up compared to what you’ve come from,” Louise smiles. “But when I look back now at the photographs, I realise, ‘Gosh, seven was so small, he was so good’. He left the hospital doing his own injections. Kids are very resilient. I’m not saying it was all easy. He was very angry about it obviously.”
Understandably, he didn’t relish having to inject himself, nor the attention that came with the diagnosis (Luke was now required to have an SNA in school), and the way diabetes might impinge on the spontaneity of certain things, such as birthday parties.
To begin with, the learning curve and the burden of the sheer administration around diabetes was somewhat challenging. “I suppose I was very scared and sad,” Louise says of the night they brought Luke home from hospital. “You’re worried and it’s very frightening. When you get used to it, it’s fine, you just adapt.
“But when you have a newly-diagnosed child, you’re afraid. Because you have to keep an eye on the blood sugars, if they go very low, it can be dangerous. I try not to think about that, but that is what can happen. Particularly at night-time in the early days, you’re very aware. As you get used to it, you adapt.”
Luke’s diagnosis meant a lot of planning around his lunchbox. “I’d have to send him off to school with Post-it notes in his lunch box for the SNA to say, if he had sport or something extra, then he needs to take two crackers. Or I’d be writing the number of carbohydrates on his banana with a pen,” she smiles, adding, “It’s something that you adapt to very quickly.”
They also noticed that, beyond food, adrenaline, excitement and anxiety could affect the blood sugar. Every Monday morning, Luke’s blood sugars would be inexplicably high.
“We decided after a while that it must be anxiety at going back to school after the weekend. I don’t think he had any realisation of that himself, he likes school and he’s not an anxious child. But it was the only thing that we could think of; subconscious anxiety.” Years later, the family would notice that Luke, a cross-country runner, would experience a surge in blood sugar due to adrenaline before a race.
In 2017, Luke’s twin brother, Michael, then 10, began to suspect he might also have diabetes. “I think when you’ve diabetes in the household, everyone becomes an expert,” Louise reflects. Before speaking to his parents, Michael chatted to his brother.
“At 10, you’re even less likely to know that your child is going to the bathroom often; they’re more independent,” Louise points out.
“We caught it very early. I think those disrupted nights had only happened a few times. I suppose you’re acutely aware when your brother has it. So, he would have been tuned into this and he had a little chat with his brother.”
Michael arrived home from school one day and told his mother he had gone to the bathroom a lot that day, and been up four times the previous night. He told her: “I had drunk my entire water bottle before 9.30am this morning in school, mum.”
“He knew the significance of this,” Louise says. “I said, ‘Will I check your blood sugar?’ The normal range is between four and seven, and he was 22. We knew straight away.”
They went to the hospital, where Michael was kept in for 24 hours. “In one way it was slightly easier for him, in that it was less of a shock,” Louise recalls. “In another way, he knew the enormity of what lay ahead.”
Louise had conflicting emotions. “Obviously we were very sad and I did feel a bit panic stricken; there was a short moment of thinking, ‘How are we going to cope with two?’ But, while we obviously wished Michael didn’t have it, as they were heading into their teens, I also felt almost reassured that they would be there for each other. It’s quite a lonely thing not having anyone else your age who fully understands.”
Now the family are very used to dealing with it, and advances in monitoring blood sugar levels, especially during the night, have made things much easier.
“The problem is in the daytime, both of them will know the feeling if they’re going low,” Louise explains. “They will know to check and take sugar, whereas they won’t wake at night-time if they’re low. Some people do, but they don’t.”
For safety, Louise in earlier days would set her alarm, usually for about 3am. “You’d get up and you’d walk down to the room and you’d finger prick them. They wouldn’t even wake,” she laughs. “Then as the technology improved, they had these sensors, where you could just scan their arm.”
High or low blood sugar levels would mean administering insulin or sugar, then waiting to check levels had settled. On these occasions, Louise would typically set her alarm for two hours later, just to make sure everything was ok.
“Now they have technology which checks their blood sugar constantly, it sends it to their phones,” she explains.
This means Louise and her husband can monitor them during the day once the twins are within six metres of their phones. “In the night, I can pick up my phone and look at it on my bedside table and I can see without getting out of bed what their blood sugars are. So I don’t have to set my alarm; it will go off if it’s high or low. Diabetes is just highs and lows, and sometimes they’re just unavoidable.”
The twins now each wear a pump, which is clipped to their waistband, and which slowly releases insulin all day.
“Every time they eat, they have to calculate how much carbohydrates they’re eating and manage the amount of insulin that goes into the pump accordingly,” Louise says. “It’s just planning and remembering, more than anything else, at this stage.”
She says the older the twins get, the easier it becomes. “They have taken on a lot of the responsibility. I’m not there putting notes in lunchboxes anymore, or sending notes to teachers.” And there isn’t anything that they cannot do because of their diabetes.
“They live a completely full life. They’re very sporty, they do everything that their friends do. Overall, it doesn’t really stop them from doing anything. I suppose we’ve been conscious of making sure that it doesn’t either. You want to be sure they don’t miss out on things because of diabetes.”
Like his brother, Michael is also a cross-country runner. To any other parents in a similar situation, she advises connecting into a network.
Louise adds: “It does get easier. I would say talk to other families if you can. “We would always go to anything that was organised where we could meet other families.
“I think that was very helpful, both for the parents and for the children. It’s almost therapeutic to be able to speak to people who know what you’re talking about. And you’ll always learn something from other people. It’s certainly not the end of the world.”
World Diabetes Day is on November 14, see cuhcharity.ie for more information