While most five-year-olds play with dinosaurs and ride tricycles, Lamar Solomons battles a rare genetic condition that causes severe seizures. Following major brain surgery at Mediclinic Constantiaberg, the little fighter still has a journey ahead.

For Candice Solomons, who lives in Belhar, Cape Town with her partner Lucian Adams and five-year-old son Lamar, there is one day she’ll never forget. I received a call to inform me Lamar was having a seizure at creche,” she recalls. “The teachers didn’t know what to do because he’d been fitting for ten minutes already.” 

While a panicked Candice raced home from work, more than an hour away, her grandparents were able to collect her son. “Coming home to your child lying on the floor, undressed, foam coming out of his mouth, is not something I would wish on any parent,” she says. “I’d instructed my grandparents to undress him and dampen him with a cool cloth so the fever can subside. We then rushed him to hospital, where his seizure lasted for two hours.” 

Dealing with seizures 
This terrifying event wasn’t the first time Candice and her partner Lucian Adams, had witnessed Lamar’s inexplicable fits. “He was two when he had his first seizure,” Candice says of her only child. She had a healthy pregnancy, an uncomplicated delivery and Lamar had reached all his milestones. “But one day, he wasn’t his normal bubbly self. I decided to put him down for an afternoon nap, and placed him on my lap. As I was checking if he’s finally asleep, I saw his eyes roll back in his head. I just gave him one big shake, as his entire body became stiff. That’s when I ran to my grandparents who live next door to ask them for help. And we rushed him to hospital.” 

 In the months that followed, the Solomons family were perplexed by the conflicting and inaccurate diagnoses they received from various hospitals – from febrile seizures to a throat infection to gastro to calcification on the brain. “And we were still up and down with him having seizures for three years, without answers,” Candice says of the family’s continued ordeal. “Our lives were tuned upside down because our entire focus had to be on him – we couldn’t leave him alone for a minute.” 

Coming home to your child lying on the floor, undressed, foam coming out of his mouth, is not something I would wish on any parent.

Medication not helping 
Following the major event at the creche, Lamar underwent a computed tomography (CT) scan, an imaging test that helps doctors detect diseases and injuries. Doctors also ordered a Magnetic Resonance Imaging (MRI) scan to get to the root of the problem. 

“They then arranged us to see Dr Bernice Naborn a paediatric neurologist at Mediclinic Panorama,” says Candice. “Her main function was to get Lamar’s seizures under control by prescribing medications. But he’s been seeing her for eight months and has gone through several medications. But none of them have worked.” Dr Naborn subsequently arranged for her young patient to see Dr James Butler, a neurologist at Mediclinic Constantiaberg to see if surgery would be Lamar’s best bet of being seizure-free.

Rare genetic disorder 
Dr Butler explains that Lamar has a condition called tuberous sclerosis, a term derived from benign tubers (not tumours) in brain. “Tubers are birthmarks, for want of a better term, in the brain,” he says “They are parts of the cortex, the outer layer of the brain, that have been malformed. A tumour is something that grows progressively. A tuber doesn’t – it’s the way the brain is made.” 

Tuberous sclerosis is a rare genetic condition and manifests mostly with seizures. Only about one in six thousand people lives with this incurable, but treatable condition.In broader society, 1 in 26 people gets epilepsy. And if you treat people with epilepsy, with medications, you get good control in about 7 out of 10 people,” says Dr Butler. “And for people who have conditions like tuberous sclerosis, the likelihood of good control with medication is lower. It’s not zero. But it’s lower. So if medication doesn’t work, you’ve got to ask what else?” 

Decision to operate 
Surgery is often the answer –  and in May 2023, Lamar underwent a six hour operation at Mediclinic Constantiaberg to remove four tubers on his brain. While the MRI had shown the numerous tubers on his brain, it couldn’t show exactly which ones were responsible for triggering his seizures. “So before the operation we connected him to an EEG machine and a video camera for 24 hours,” Dr Butler explains. “As these pieces of equipment run simultaneously, we could see what was happening in his brain when he had a seizure. This helped us understand which regions of the brain were generating his seizures.” 

While Lamar’s post-operative progress was smooth, his medical team say he is still on the path to wellness. “After surgery his seizures stopped completely, but I cautioned his mother that we can’t count our chickens too quickly, particularly with this condition,” says Dr Butler. “For some people, like Lamar, the remaining  tubers do cause seizures, sometimes after a delay of a variable period. If medication doesn’t help, he might need to undergo further surgery.”

Fighting for a future 
For now, the Solomons family take things one day at a time. “To be honest, Lamar’s illness came as devastating blow,” says Lucian. “Even now, as we are waiting for the second surgery, we are still trying to come to terms with it. But what I can say is that I am proud of the way my son handles the seizures. To me, Lamar is my little superhero. That is how I describe him.” 

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