TODDLER SEIZURES: WHAT TO DO?

Kiddy seizures are the worst. There are soooo many different kinds of seizures, from the type that look like a vacant stare (absent seizures) to the worst kind (which Edward has) tonic chlonic which are convulsions coupled with stiffened limbs. They last about half a minute but can go a minute or longer. We have these nearly every night, mostly multiple times a night.

Yesterday I nearly cried as I watched Edward's little face turn purple and blue. His big blue eyes were bulging out of his face and pleading with me in pure terror. His jaw had stiffened and clamped shut onto his bottom lip and his throat and chest had tightened so he couldn't breathe. He was literally suffocating himself whilst trying his hardest to draw breathe.

I had to talk him through our visualisation exercises. Try to tell him to relax and be calm when all I wanted to do was scream and bawl my eyes up and swear like a sailor at whatever was cruelly torturing my son. it is virtually impossible to stay calm when your beloved baby is staring at you in panic and you are completely helpless to stop the thing that is hurting him.

With Edward's seizures, he will typically enter a breathing apnea phase straight after a seizure. This is where all the previously rigid or convulsing muscles are now fatigued to the point where they collapse. So his tongue falls into his throat and he can't clear it because he has no control over his limp throat and tongue muscles. More not breathing suffocatey scarey times.

Both before and after he is terribly upset. He is understandably terrified of seizures. And scared of going to sleep ( his seizures are mostly nocturnal) I have no idea what they actually feel like inside his brain and body - but it looks painful. Adults describe a range of horrible sounding feelings. Kids as young as mine can't communicate in that detail yet but I know he is bewildered and sad about why this happens to him

He also suffers auras. Which sound magical .. but aren't. They are the premonition or onset of a seizure. He knows when they are coming and often literally pees his pants in fear and anxiety. Trying to calm him when he knows something awful is coming to get him... when he is just inconsolably hysterical is futile. They always get him in the end.

So what should you do if seizures happen to you or your child?

1. Don't put a stick in their mouth. This is old fashioned witch doctoring. Doesn't help.

2. Get them somewhere safe and comfortable. Floor is good. Bed is better - less potential for injury.

3. Protect their head and limbs if they are fitting. Remove restrictive clothing and breakables.

4. Roll them onto their side, towards their heart. Left arm side down.

5. Clear airways and if they swallow their tongue, fish it out with your fingers.

6. Once convulsions have ceased check they can breathe normally - don't offer water yet.

7. Hugs. Many hugs. They will probably be exhausted, really tearful or frightened or all of the above.

8. If they want to sleep, let them. If they want to get up, watch them carefully - balance and spatial awareness will probably be a little off for a while.