“Today, [three-year-old] Eray’s diet is more diverse than ours,” says Dutch mum Seyma Soykan, who is based in Dubai. “But there was a time it was touch and go – he didn’t eat or drink anything for about a year and a half.”
It all began when he was six months old. He’d be playing one minute and rolling his eyes the next. “When he's rolling his eyes you don't immediately think he's having a seizure – it presents differently in children,” says Soykan, who was living in Holland at the time. But when it continued to happen over the course of the day, she decided to see the doctor.
“He was diagnosed with a very aggressive form of epilepsy for babies, which is called West Syndrome,” the 33-year-old tells Gulf News in an interview.
To counter the harsh throws of a fit, Eray was put on a series of oral medications. “At one point, he was on 11 or 12 medicines per day,” recalls Soykan.
He was also put on a ketogenic diet to help keep the seizures at bay.
Infantile spasms is one of the established ‘indications’ for ketogenic diet treatment. In fact, the ‘European Journal of Paediatric Neurology’ published guidelines for the use of ketogenic diets in infancy (defined as less than 2 years of age) in 2016.
Source: The Royal Children’s Hospital Melbourne and Epilepsy Foundation
As the days ticked on, Soykan and her husband chanced on an internal job within the same company in Houston Texas, which was also home to a medical centre that specialised in West Syndrome treatment. They moved countries and consulted new doctors, swapping some drugs out for others. When this happened, Eray began to get great bouts of nausea.
“He kept throwing up. Everything that went into his mouth, would come out,” she recalls.
Sometimes, he wouldn’t even need to eat for the belly bile to spew out. The result was a traumatised baby with corrosive acid stripping his oesophageal lining, inflaming his insides.
“If you keep punishing a child for something they do, they stop doing it. And throwing up is a form of punishment for a baby,” says his mum. At the age of one, he just stopped putting anything in his mouth, no food, no water, no medicines.
By this time the seizures seemed to have stopped but the Soykans could not compute this change; all they knew was their baby was wasting away.
Before the hospitalisation, Soykan recalls, the family would have friends over to help them. “One of them would hold one of his arms, the other one would hold his head. The other one would sit on his legs. I'm talking about a one-year-old baby. We would just squeeze his cheeks to put the water in his mouth with a syringe,” she says.
Deteriorating health
“It's very hard to imagine if you're not in the same situation. But if a child doesn't want to open his mouth, he will fight you forever not to open his mouth. So he learned how to kick, he learned how to push us he learned how to bite on his tongue, so that you wouldn't be able to stick a syringe in there to give him some water. And obviously, like after a few days, he started to get lethargic. If you don't drink or eat for a long time, you'll eventually die. That's the hard truth,” she says.
His health was deteriorating at a quick pace – and they couldn’t pinpoint the cause of the vomiting that was creating the food phobia. After a lot of back and forth between hospital and home, the doctors decided to hospitalise him. “He was so dehydrated that we went to the hospital. We couldn't get an intravenous line in him for six hours, because his veins were so puckered.”
“There, he had to have surgery to put a tube directly in his stomach. He still has the tube, although we now only use it to deliver medicine – it’s been a year.
“We're very grateful for the tube: it helped us get some fluids and foods in his stomach. But he kept throwing up because we still gave him the medicine that was poisoning him.”
“And at some point, my husband's company was like, ‘You're not going to work until your baby is well enough’. So my husband spent his day reading articles about all the medicines he was taking. And he found that one of them could have had like a very rare side-effect that would cause his stomach and organs to fail. After that data we talked to his neurologist and all his doctors and they agreed to lower the dose of that medication, risking more seizures,” she says.
“You know, if you keep throwing up, if your stomach, your intestines don't work, a lot of problems come with it,” she mulls. “He just stopped moving, turning around, having eye contact, smiling…”
With the change in medicine dosage, he began to regain the weight he’d lost and things began to look up. However, she says, the food aversion continued.
Getting help
Being a clinical psychologist herself, Soykan knew she needed help and so she enlisted feeding therapists both from Houston as well as in Holland. COVID-19 may have stalled one-on-one sessions, but she decided to get help online. She says, the therapists helped her understand that:
1. Food pipes aren’t bad: She reframed the narrative. “A food pipe doesn't mean that your child is sick, it just means that the tube is helping your child to get better,” she says. “In the beginning it was very hard to understand if no one explains to you why a tube is needed. If I could go back, I wouldn’t have waited so long to get him one.”
2. Food aversion won’t stop just because the child is well; it is a gradual process of rehabilitation that’s required.
3. You must stop stressing about food: “If you keep stressing about fluid, the child stresses because you're stressed, it's a bad thing. And as soon as you let go, you're like, ‘Okay, you don't have to eat anything by mouth, you don't have to touch your mouth. You don't have to do anything you don't want done,’ you just let go of the pressure. So, Eray would just sit at the table with us, we would eat and he would look at us. And he would be fed by the tube. So he would be full. The anxiety dimmed,” she explains.
4. People may not understand: “This is why it’s important to talk about it. People understand that when a child is sick, that they don't eat and so, they need a feeding tube. But we got home and for one year, he didn't touch food. People - family, friends - kept telling us, ‘Oh, you just have to make sure he's hungry.’ Or, ‘Just give him to me, he will eat in my house’ … very, very ignorant stuff like this.”
5. It’s not that uncommon to have a feeding tube: Soykan explains that once she did speak up, others – friends and family members spoke up about people they knew who faced something similar – a fear to eat owing to purging. “Maybe if I knew earlier then it would be something less scary initially. So it is important that when there is something going on with our children, regardless of the kind of condition it is, that we talk about, that we don't act as if talking about it makes it worse, we're not going to attract worse things by talking about it,” she stresses.
Rehabilitation
It took about four months for Eray to swallow a sip of water. “Every day we worked with him, we made sure he had access to food and water, so he could touch them. We would add them to his toys and accidentally they would touch his lips because the toys would touch his lips. So he would get like a taste of things and figure out how they made him feel,” she recalls. The introduction of water, she says was thanks to this method.
The medicine that was causing the trouble was finally stopped last year. “Just before we moved to Dubai, we saw that his skin was yellowish and apparently, it was harming his liver,” she says. And since he’d been seizure free for one and a half years at this point, they stopped administering it.
Currently, Eray is on one anti-epileptic drug. “West Syndrome or infant infantile spasms is something that they grow out of, but epilepsy, not necessarily. He's three years old now and we are trying to prevent anything like that, but the fear will never go away. Like if, he's eight years old, we will start worrying about puberty. Because in puberty, other epileptic syndromes can start; he will always be sensitive to epilepsy in other forms,” says his mum.
Parental relationships
When you have a sick child to tend to, it takes a toll, not only on you but also your relationships. This, says Soykan, can make or break your bond. “Obviously, it's very difficult to handle the stress. So I had days that I would break and my husband would be there. And he had days that he broke and I was there. So I can say it made us grow closer to each other rather than break us apart. But that's just also because he's always there. He's always involved,” she explains.
Caregivers are traumatised too
Soykan recalls an incident, in Houston, that still chills her bones. “They put a catheter in one night, and it took them an hour to put it in. So you can imagine 3am in the morning, a child is screaming out of pain and they keep doing it. In the end it worked, but he urinated blood for a week.” That’s something she needs help to deal with, she says. “I do talk to therapists, I think that everyone, even with minor issues, before it gets to you, before it's all too much. Just talk to someone,” she says.
Two kids, one sick
When you have two children, one of whom is three years old and the other is six months of age and in hospital, it’s bound to be tricky – being able to be there for both of them. Soykan explains that Eray was in hospital for seven weeks in Holland and three months in Houston. “In Holland, you know, all our family’s there. He got more attention than ever before.
“My older son would come to the hospital, read books, we would play … just spend quality time with us. The hardest part was leaving him at night. And so when was dinner time, he had to go back home, my husband would go with him. So my husband was always there for the older one at night. He would also stay with him at night, but and then he would come to the hospital in the morning. It was teamwork,” she says.
“Then Houston was actually the same. So my husband will be there for dinner time and bedtime. And at night, and in the morning after breakfast after dropping off at school, he would come to the hospital. And then when we were at home, we made sure I spent time with my older one and that we recreated the bond we had,” she says.
“I think the hardest part was having to explain that I needed to stay in the hospital.”
But, as parents, she says when a child is ill, you are in survival mode. “Maybe I've cried one or two times, but then I was like, okay, this is not, there's not something I can spend energy on,” she says. “I did feel like a soldier all the time in the hospital. Not strong, just keeping my head above water.”
Three years on, the grey clouds of illness still cast a small shadow; Eray’s developmental milestones are delayed, his is currently non-verbal. But on most days, the family takes no notice of this. He’s got a diversified palate; he is an active and happy child with a new sibling on the way. They breathe easy and admire the glow of good health.
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