What a day

Ryley scared the hell out of me today and I am only writing this because I just need to get my thoughts out.

This morning he had a 10 minute seizure of some description.
I say some description, because it wasn't a generalised tonic-clonic.
His eyes just moved rapidly from side to side, his breathing slowed and his face started to go blue while his body remained limp.
I have never seen this type of seizure before.

He basically vomited before hand, then vomited afterwards for about an hour.

He isn't sick.
There has been no indication that anything is wrong in his body.

All I can think of is could this be hormones???

So all day I have been scared as hell, watching him like a hawk and hoping like hell he doesn't have another one.
I very nearly called an ambulance and if this happens again I will be.
10 minutes is too long.
I should have called one at 5 mins.

Just when you think things are going along fine hey?
BAM!
They turn to shit again.

In amongst all of this, we made progress towards our dream.
More on that another day when I can think straight.

Anyone have any advice on the seizure thing?? I am wondering how the Ketogenic Diet is going to affect Ryley as puberty sets in. Maybe we should go off it.
But then what if that makes things worse and we lose our healthy Ryley.

Really looking for someone to come walk a day in my shoes please.
And then give me some answers ok?



Comments

  1. Oh - sorry to hear this Anna - how terrifying. Big hugs to you and Ryley.

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  2. Anna, sorry to hear of this.... from what you described that happened with his seizure is what Sam has had a couple years ago when he was hospitalized for an illness. He eyes were "twitching" all around and went back, turned blue, stopped breathing. He had to be on oxygen full force for several days. Since then though we've managed to keep his seizures under control. Many prayers for Ryley as always. Hugs.

    Christina & boys

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    Replies
    1. Hi Christina, How scary for you guys.I hate seizures. I am at least aware now that as soon as it happens again I need to call an ambulance! I hope it doesn't happen again though! Love to you all xoxo

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  3. I have no advice, sorry. Just want to tell you I'm sending love your way. Thinking of you and Ryley and hoping for no more scary, long, weird seizures of any kind!!

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    Replies
    1. Thanks Hilary! I hope their aren't any more either!

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  4. I am sure this must be a scary moment and hope all is better. Life in the world of disability is a roller coaster ride; never quite smooth and you are right, once in awhile, things do turn to shit! Hope that it's a small blip...sending positive energy to you both..

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    Replies
    1. All is ok again Phil. Am hoping it is just one of those things, but with Ryley and seizures, who knows! At least I am back on high alert again.

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  5. Hi! I just stumbled on your blog and I work for a neurologist (not that it makes me an expert, but I see a lot of seizures!). What you described sounds like a partial complex seizure. Do you have any rescue meds like Diastat? Diastat is a rectal gel (no fun, but it usually works) that you usually administer if one seizure has lasted longer than 2 or 3 minutes and it stops the seizure. If you don't have that, you should definitely check into it! Just a thought :)

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