The seizure rollercoaster

Week 5 of being out of our home for Lennon’s adaptations and the little guy has most certainly kept us on our toes this week! 

We picked him up from Nascot Lawn (Respite) on Sunday and he just wasn’t himself. As the week went on we couldn’t snap him out of it and the guessing game as to what was wrong started. And then on Thursday evening Lennon started having seizures and lots of them. On Friday morning woke up with a gastro bag full of very dark green fluid (a clear indication his bowel isn’t functioning as it usually does) 

I took the fluid into Lister to get it cultured and told the community nurse about the seizures and he told me to bring Lennon in straight away 😢 

Once we arrived in A&E Lennon’s seizures were almost back to back and he was given a dose of IV lorazepam. This stopped the seizures and Lennon was back to his normal happy clicking self! Until it wore off and the seizures begun again. They tried to run phenytoin through his port a Cath but it wouldn’t go through. By the time we were transferred to the ward they were coming thick and fast again so more IV lorazepam. 

The seizures carried on all day Saturday and Lennon was discharged  in the afternoon. They have diagnosed partial complex seizures as well as tonic seizures. An urgent sleep deprived EEG has been booked (as the previous one showed nothing) and we have been told to keep a book of seizure activity and keep videos. 

They are very reluctant to start medication due to Lennon’s very complex medical background and his severe endocrine issues. They think that is a job for GOS – Which I agree with. 

Life is never boring with Lennon! And being away from home for 5 weeks now is taking its toll on us all. Looking after Lennon away from home is tough, but when he is not himself it’s so much more difficult. 

Fingers crossed for much less eventful and more fun filled half term! 

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