This Morning: Mother of boy with epilepsy begs for help
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When Lake Hodgkinson was nine months old, he started having giggle seizures. Strangers would join in laughing, but mum Kennedy Hodgkinson knew something was wrong. A few weeks ago her fears were confirmed – now 14 months old, Lake has a brain tumour that could affect his cognitive development, eyesight and hormones, potentially resulting in early puberty.
Despite having up to eight seizures a day, baby Lake is “still so happy”, his mum said.
She added: “He never stops smiling, he’s the happiest little boy in the world.”
He loves being in nature, swimming and cuddles. But Ms Hodgkinson is worried about what the rest of his childhood will look like due to the tumour nestled just behind his eye.
The tumour is pressing on the pituitary gland, which controls hormone production. Left untreated, Lake could go through puberty as early as five. This comes with a “long list of complications”, including potentially making him aggressive and causing infertility.
There is also the possibility he could lose his eyesight, although Ms Hodgkinson said for now he seems able to recognise her.
They also do not yet know how the tumour and related seizures are affecting Lake’s young brain.
Ms Hodgkinson estimated he has had more than 100 seizures in his short life and she worries about what that’s doing to his development. They have already noticed he has not hit some milestones.
She said: “We don’t know what his future may be like.”
While the diagnosis of a brain tumour was emotional, it also came with a sense of relief.
Lake had his first seizure at five weeks old, although he was not diagnosed with epilepsy until the age of seven months.
The most recent diagnosis confirmed what Ms Hodginkson suspected – that Lake’s gelastic or laughing seizures are caused by a tumour.
Lake is Ms Hodginkson and partner Josh’s first child, but her mother’s instinct told her something wasn’t right about the giggle seizures.
She said other people would brush them off by saying all children laugh, but she knew Lake’s outbursts were different.
She said: “He would scream, and then do this uncontrollable laugh, and it was like he’d seen a ghost, he was so scared but he was laughing and he wasn’t himself.”
She said the reality of the diagnosis “still hadn’t fully sunk in”.
It had been “so hard”, she said, particularly as the condition is so rare she is yet to find any other parents going through the same thing.
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The family is now considering surgery options.
Ms Hodgkingson said: “If we leave it, medication might treat it, but he’ll probably always have seizures. And this medication causes side effects, and the tumour can cause aggression and behavioural problems. And when he’s older, he might not be able to have a job because he’s having seizures, and it could make him infertile.”
She said they have researched and are fundraising for laser ablation and Gamma Knife radiosurgery, which are the least invasive forms of treatment and have higher success rates than traditional surgery.
She said: “We’ve read out that it’s like 93 percent effective and you might not have seizures again. So for us, it’s a whole light at the end of the tunnel that we could completely fix it.
“I think we as a family just want to try what we can.”
She said she also wanted other parents to be aware of what giggle seizures look like, “because they’re not like your typical seizure, but they are so damaging to the brain”.
She said: “There will be parents in the world that could be dealing with it and they don’t even know.”
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