As a parent, there is nothing worse than knowing that there is something medically wrong with your child. I wrote last week about some of the things that James has been going through with relation to his "Vacant Episode Seizures" and the seizure that he suffered he in sleep. He saw a doctor last week who refereed him to a specialist which he is due to see later this month. Last night though he suffered another seizure so after a telephone call this morning with the same doctor it was decided that James needed to be seen at the hospital today by the Pediatric Team.

I cannot say enough nice things about the team that looked after him today, everyone from the Nurse that admitted him to the Play Specialist that helped to distract him whilst the doctor took his bloods was fantastic. They were helpful, thorough and put James at ease. All of these things helped not only James but also me as the worried Mum. 

They are working off a diagnosis of Epilepsy. Just writing that makes me sad but I'm glad that we have something to work with now. He is booked in for some more tests later this month, before his appointment with the Pediatric Consultant. I have a long lists of things that James cannot do at the moment, or rather things that I have to do.. For example, I am unable to let him go swimming on his own... (who lets a four year old go swimming on their own???) He cannot play in the garden on his own.. He needs to be accompanied in the bathroom.. Basically he needs to always be with a responsible adult... Again, who leaves a four year with anyone who isn't a responsible adult?!

James has two weeks left at Nursery before the Summer break.. Anthony and I discussed it this evening and even though we trust his teachers, they have already told us that they cannot guarantee that they won't miss a Vacant Episode.. They are easy to miss, especially with 30 other children running around, which I can understand. At the moment though, James needs one on one attention and constant monitoring so we've made the decision that James will not finish the last two weeks. It's sad but his health comes first and at the moment that is all that matters to us. I know some people might accuse us of wrapping him in cotton wool and being too over protective but in our eyes it's the right thing to do. The doctors cannot help James if they don't have all of the information and if there is a risk that seizures might be missed, we need to limit that happening.

Right now.. I feel like my brain has been over loaded with information.. I'm trying to get my head around all of this whilst not letting onto James whats happening. I don't want him worrying about something that he cannot control.

And with that I'm off to snuggle with my little man in bed.. It's been a long day...

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  1. I remember feeling the same way when my son was diagnosed with Autism. It was heart breaking but I was relieved that we finally had a starting point from which to build on.

    Sending serious hugs your way!

    1. Thank you! I'm glad someone understands what I mean! :)


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