When little Jack Young, from Winscombe, North Somerset, started chuckling two weeks after he was born, parents Gemma and Ed just thought that he was an unusually joyful baby.
But it turned out that the incessant giggling fits were actually bouts of "laughing seizures", caused by a hypothalamic hamartoma – a benign brain tumour.
“There was no break from it, the chuckling sound was constant and for a long time we had no clue why," said mum Gemma, 32.
After two years of outbursts, which started from dawn 'till dusk, Jack had a 10-hour op to remove the growth.
And just like that, the strange seizures stopped.
What is gelastic epilepsy?
"Gelastic" comes from the Greek word Gelastikos, meaning laughter. Gelastic epilepsy is a type of the condition which sees sufferers having outbursts of uncontrollable laughter.
It's super rare but is more common in boys than girls, and affects roughly one in every 1,000 kids.
According to Epilepsy Action, the most common cause of gelastic epilepsy is a small tumour in the hypothalamus – which is what little Jack had.
- laughing fits which are described more as 'hollow' or 'empty'
- laughter for no apparent reason, starting and stopping suddenly
- eyes and head moving to one side or the other
- automatisms like lip-smacking, fidgeting, mumbling
- premature puberty – usually under the age of 10
Doctors explained how the rare gelastic seizures normally happen to one in 1,000 kids with epilepsy and involve sudden bursts of energy – usually in the form of tears or laughter.
After Jack was born in May 2014, he started giggling even in his sleep, with outbursts lasting between 30 minutes and 17 hours non-stop.
“To be honest, we just thought he was so happy all the time,” said Gemma.
“It was a little chuckle but it just seemed to go on and on, like a record on repeat.
“To start with, I was just a new mum trying to get into a new routine, but after two months things became too much and we had to move Jack downstairs to sleep in the end as he was keeping his brother up too. It was exhausting.”
It was only at Jack's six-week checkup that a health visitor told Gemma that she was concerned about Jack's giggling noise.
“I felt awful that another woman had noticed this in my baby, and as a mum, it should have been me who realised it,” Gemma continued.
She immediately took Jack to see the GP who and referred him to an ear, nose and throat specialist.
“By this time, none of us were getting any sleep at all and I was begging doctors to do something,” Gemma said.
“The sound was relentless and so unpredictable. It was hard to fall asleep, as I had no idea when the noise was going to happen again.”
But even the specialist didn't really know what was happening – and so referred the family on to see a neurologist at Bristol Royal Hospital for Children.
“Even a nurse at the hospital thought he was just laughing and was shocked when she realised his ‘laugh’ was the reason we were seeing doctors,” Gemma said.
“People would say to us, ‘Isn’t he a happy lad?’ and he was a really happy little boy, but his chuckle wasn’t laughter, it was something else. I had no idea what could be wrong with Jack, but I was terrified that it might never stop.”
Finally, after Jack had an MRI scan, his family received a diagnosis.
“The doctor said he had hypothalamic hamartoma, meaning he had a benign brain tumour the size of a grape at the base of his brain, which causes gelastic seizures (gelastic meaning 'laughter' in Greek).
“It was a huge relief to know what was actually wrong with him, but so heartbreaking at the same time to think he had gone through all of that.
“All his other areas of development were so amazing, like his speech and understanding, but he was laughing all the time,” Gemma said.
“It didn’t affect him eating solids at six weeks or walking at one-year-old – in fact, strangely, he could walk and laugh at the same time.
“He would go about his day as normal, but have the laughter too.”
Since the op, Jack – now four-years-old – hasn't had one single laughing seizure.
Although his parents admit they can still get nervous when he giggles naturally – as he often does at jokes on TV cartoons – they are so thankful he can live a normal life.
“The day after the operation we realised Jack had not giggled once, which was a strange feeling,” Gemma said.”We were sat around waiting for him to do it, but he didn’t. But when we did hear him laugh properly for the first time it was amazing.”
Gemma added: “He’s such a happy little boy now and is a real success story.
“He is such a cheeky little lad, with a great sense of humour, coming out with one-liners which make us all laugh.
“Hypothalamic hamartoma is so rare and I want other parents to know there is light at the end of the tunnel and things do get better. That operation changed Jack’s life, and ours, and we are so thankful.”
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