Suffering from a severe form of epilepsy, a boy from the Quebec region is about to undergo a delicate and complex brain operation, which could free him from his many daily crises.
“It’s a last chance to improve his quality of life,” says his mother, Meggie Perron, who thought long and hard before having her son undergo this “irreversible” procedure at the Montreal Children’s Hospital (MCH). ).
“The hardest thing is helplessness. If already, I did not see him suffering any more, it would be a great victory, ”adds the mother of the family, from Pont-Rouge.
Up to fifty seizures per day
9-year-old Samuel Méthot suffers from Lennox-Gastaut syndrome, which causes him to have numerous epileptic seizures on a daily basis.
During his first years of life, he lived between twenty and fifty seizures a day, causing him violent projections forward.
More recently, Samuel is sometimes the victim of long crises, which can stretch over a period of 48 hours, which requires emergency hospitalization, says his mother.
Moreover, no medication improves his condition. He is “drug resistant”, underlines his neuropediatrician, Dr.r Bradley Costerman, of the HME.
In an attempt to lessen the frequency and intensity of his seizures, he will today undergo a rare neuro-surgical procedure called a callosotomy.
This aims to cut the “corpus callosum” which connects the two hemispheres of the brain.
Long day
The day promises to be long and agonizing for Samuel’s parents, as the operation will be performed from 6 a.m. to 6 p.m.
“I don’t know how I’m going to manage. We have nerves on edge, but my guy needs me, I have to be positive, “says Mme Perron.
“We couldn’t refuse this option, since we would have wondered all our lives what it would have been like,” she continues.
Fortunately, Samuel shows great resilience, she says. “He is the one who relaxes me with his calm. He is very brave,” adds the 36-year-old woman.
regain the floor
Due to the constant cerebral electrical activity in his brain, Samuel shows signs of developmental delay. He does not speak and has some motor problems, among other things.
“It’s as if Samuel had an electric storm in his head all day long. What prevents him from making gains and progressing, ”explains the Dr Osterman.
For meme Perron, the ultimate objective of this operation is to eventually allow Samuel to speak.
“Around the age of 21 months, he was babbling, but then the numerous epileptic fits started and made him lose his knowledge,” she says.
An operation rarely performed in the world
Performed in highly specialized epilepsy centers across the country, callosotomy is a rare procedure, which is intended for a “very specific” clientele.
Thus, this type of intervention has only been performed three times in the last ten years at the Montreal Children’s Hospital (MCH). The neurosurgical operation was performed approximately the same number of times, over the same period, at the Sainte-Justine University Hospital Centre.
He’s a specialist neurosurgeon, Dr.r Roy Dodley, who will practice this long intervention on Samuel, on Wednesday.
“It’s a rare operation in the world. It was no longer used in the 1940s, but then disappeared with the advent of several drugs and other neurosurgical procedures. However, it is starting to come back. We see it in patients with a very specific EEG (electroencephalogram), like Samuel’s, “explains the neuropediatrician, Dr Bradley Osterman, HME.
Circumscribe epilepsy
By cutting the corpus callosum, which unites the two hemispheres of the brain, the operation aims to prevent the propagation of electricity from one side of the brain to the other.
In Samuel’s case, the epileptic focus would be identified in the right hemisphere of his brain, then would spread to the other side, where language is found in particular.
“Currently, his diseased hemisphere contaminates the healthy hemisphere, continuously,” explains Dr.r Osterman.
Step towards healing
The intervention is in fact a “step” towards the eventual recovery of Samuel. The callosotomy thus has a 20% chance of completely freeing him from his convulsions, explains the specialist.
“It’s not huge, but then we will have a better chance of changing Samuel’s quality of life, by unmasking the specific focus [de l’épilepsie] to treat it in a more targeted way. If you can identify the focus, you increase your chances of recovery to 75-80%,” he says.
The intervention should also explain the causes of Samuel’s Syndrome, while biopsies will be performed on the removed tissues. “We don’t know why Samuel has this catastrophic epilepsy, which has a huge impact on his development,” questions the expert.
Risks
This delicate operation is not without risk, however, warns the neuropediatrician.
Although it is “extremely” rare in children under 10, a “disconnection syndrome” could be observed in Samuel, following his operation.
“It can have an impact on memory, language or coordination. Sometimes it’s only temporary and it can only last a few months, ”explains the Dr Osterman.
In addition, the risks of infections, cardiovascular arrest (ACV) and hemorrhage are estimated between 2% and 3%, supports the doctor.
Lennox-Gastaut syndrome
- A severe form of epilepsy that mainly affects children
- Many affected children do not respond to medication
- Frequency and intensity of seizures very important, even daily
- Generalized epileptic seizures, that is, seizures that affect all parts of the brain, including causing developmental delays