Seven things to know about epilepsy in children as new drug rolled out

Youngsters in England dwelling with a uncommon and extreme type of epilepsy could soon benefit from a new drug being rolled out on the NHS.

Fenfluramine has been beneficial by the Nationwide Institute for Well being and Care Excellence (NICE) for sufferers aged two and over with Lennox–Gastaut syndrome (LGS).

LGS is a uncommon and extreme type of epilepsy that begins in early childhood and is immune to many remedies. It’s thought that round 1-2% of the 60,000 kids in England with epilepsy have LGS.

The drug, the primary non-cannabis-based remedy authorised for this type of epilepsy, is taken as an oral liquid medication day by day and works by rising the degrees of serotonin within the mind to cut back seizures.

Lisa Suchet, whose 10-year-old son has LGS, says the drug presents her son hope of “seizure freedom”.

“My son has suffered with seizures since he was 5 weeks of age, together with drop seizures, that are probably the most devastating,” she stated. “They happen with out warning, trigger rapid collapse and the chance of head damage is excessive as a result of sudden fall.”

Suchet says till now there have been so few efficient medicine for seizure management. “Many don’t work for all sufferers; many have debilitating negative effects or interactions with different meds a affected person might need to take,” she explains.

“That there’s an alternative choice now accessible, which has proven efficient outcomes and minimal negative effects is a large consolation. It’s primarily offering an opportunity of seizure freedom, which is actually one other probability at life actually; for the affected person and the household or carers who’re impacted so considerably by this terrible illness.”

What’s epilepsy?

Epilepsy is a neurological situation (affecting the mind and nervous system) the place an individual tends to have seizures that begin as a disruption of alerts within the mind.

Some kids cease having seizures after a interval of being on remedy, others, nevertheless, want remedy for lengthy intervals.

The situation is extra widespread than many individuals realise, with round one little one in each 200 dwelling with epilepsy.

What causes epilepsy in kids and is it hereditary?

The NHS says that whereas there’s generally a transparent purpose for epilepsy growing, for instance a extreme blow to the pinnacle, an an infection of the mind corresponding to meningitis, or mind injury because of lack of oxygen throughout a tough beginning, in different circumstances it is not apparent.

It is doable a baby’s epilepsy might be partly brought on by their genes affecting how their mind works, because the NHS estimates round one in three individuals with epilepsy have a member of the family with it.

What occurs throughout a seizure?

Seizures are brought on by a sudden burst {of electrical} exercise within the mind, which quickly disrupts the best way messages are handed between mind cells.

There are a selection of several types of epileptic seizure, however the kind a baby has relies on which a part of their mind is affected by the situation.

The Epilepsy Society says there are two important forms of seizure: focal seizures and generalised seizures.

“Focal seizures begin in just one facet of the mind and generalised seizures have an effect on either side of the mind,” the charity explains. “Typically, adults and youngsters have the identical forms of seizure. Nevertheless, some could also be extra widespread in childhood (for instance, absence seizures which could be very temporary and are sometimes mistaken for ‘daydreaming’ or not paying consideration).”

The sort of signs a baby experiences throughout a seizure can embody:

• uncommon sensations corresponding to a wierd style within the mouth or a wierd odor, or a rising feeling within the abdomen.

In some forms of seizure, a baby could also be conscious of what’s taking place. In different varieties, a baby might be unconscious and haven’t any reminiscence of what occurred afterwards.

Some kids could have seizures when they’re sleeping (generally known as “asleep” or ‘nocturnal’ seizures).

What causes a seizure?

The Epilepsy Society says some kids’s seizures can happen in response to triggers corresponding to stress, pleasure, boredom, missed remedy, or lack of sleep.

The charity recommends maintaining a diary of your kid’s seizures, which will help to see if there are any patterns to once they occur and what could have triggered them.

What to do in case your little one has a seizure?

If a baby experiences a tonic-clonic seizure (when their physique goes stiff and the kind of seizures most individuals affiliate with epilepsy) the Great Ormond Street Hospital recommends not making an attempt to cease it.

“As an alternative, transfer any furnishings out of the best way, attempt to loosen any tight clothes across the neck and stick with the kid till the seizure has completed,” the positioning explains. “As quickly as uncontrolled actions end, lay the kid on their facet within the restoration place.”

If a baby has one other kind of seizure, it is strongly recommended you sit them down quietly and stick with them till they’re totally recovered and alert. Reassure the kid calmly.

The NHS recommends calling 999 for an ambulance in case your little one:

• is having a seizure for the primary time

• has a seizure that lasts greater than 5 minutes

• has a lot of seizures in a row

• has respiratory issues or has significantly injured themselves

Do kids develop out of epilepsy?

The quantity and kind of seizures your little one is having could change over time. However some kids do outgrow their epilepsy by their mid to late teenagers. In keeping with the Epilepsy Society that is known as “spontaneous remission”.

Can epilepsy in childhood be cured?

There’s presently no treatment for epilepsy, however remedy will help most youngsters with epilepsy have fewer seizures or cease having seizures fully.

• medicines known as anti-epileptic medicine – these are the primary remedy

• surgical procedure to take away a small a part of the mind that is inflicting the seizures

• a process to place a small electrical machine contained in the physique that may assist management seizures

• a particular food plan (ketogenic food plan) that may assist management seizures

In very uncommon circumstances when remedy doesn’t assist, and scans point out a structural mind abnormality is the trigger, surgical procedure could also be urged.

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