IS and us: Infantile Spasms and the Worst 8 Weeks of our Lives

For Throwback Thursday this week I am reblogging a post I wish I had never had to write. And equally, I wish it wasn’t sought out so often via Google by parents who sometimes use the most desperate search terms to find it. But I also want to spread the word about infantile spasms, the rare form of epilepsy Boo developed in December 2012. It is horrendous, but Boo’s story so far, is a happy one with a good outcome, thanks to early diagnosis and effective treatment. If this post helps one other person recognise the symptoms or gives a recently diagnosed family hope, then this blog will be worth every minute I manage to spend on it. Thanks for reading.

Premmeditations

Mr Boo and public holidays don’t get on. All my plans for Easter 2012, a last and long holiday with Sissyboo before her little brother was supposed to arrive 2 and a half months later, was totally upskittled by his surprise entrance on the Monday before. Easter Sunday, as he lay lifeless quietly fighting meningitis and sepsis, was one of the most gruelling days I hope we’ll ever have to get through.

So we had high hopes for Christmas. We were all together, after all, and we were going to my parents’, so I could relax. We were going to make it up to Sissyboo.

And then Mr Boo started hiccuping on Christmas Eve while I was breastfeeding him after he had woken up from a nap. It was kind of funny and cute feeling the pulsing of his pleasantly chubby tummy against mine.

In the wee small hours of…

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