New Year Update

(Belated!) Happy New Year to visitors of the blog – 2017 let’s be having you…

Since I was last on here, little has changed.  Luke remains “seizure free”, we have noticed some instances of staring for a few seconds when he is very tired (what we presume to either be a very mild complex partial seizure, or perhaps an Aura??!!) but since a small increase of Lamictal in December they have reduced/disappeared.

We had an Outpatient Appointment with Luke’s Paediatric Neurologist two weeks ago and he was delighted with his progress.  For a number of reasons; including the results from the PET Scan Luke had in September, it has been agreed by his medical team that Luke would not be a suitable candidate for Epilepsy Surgery.  Of course as long as Luke remains seizure free and tolerating his medications then this would not be an avenue we would explore any further, however it does mean that if for any reason Luke’s daily/nightly seizures returned it would be one less option for him.

For now his Neurologist is keeping his medications at the same level, to see how the next six months go, and hopefully at that stage we can start to reduce some of the doses.

Luke is happy, he had a great Christmas – he is doing really well at school.  No significant issues with concentration or memory and overall is much calmer and stable in himself.

I have decided that in order to preserve Luke’s privacy and mindful of his right to be a normal 7-year-old boy I am not going to update the blog as regularly as I have up to this point.  Of course if anything drastic changes in his condition then I will note it on here.   The blog has served it’s purpose in documenting the start of Luke’s Epilepsy journey and hopefully will be useful to any parents who come across it experiencing similar roadblocks and emotional turmoil at the beginning of their child’s condition – and then to see that at least in Luke’s case there can be a light at the end of the tunnel – if not always permanent, even temporary relief should be celebrated.

2016 taught me a lot about myself and the strength of my family, and as clichéd as it sounds, your health is your wealth! but the one thing which has changed my whole perception of life is the saying:

“This too shall pass”.

In the darkest days, and when things are just not going my way – I always tell myself everything is temporary!…Oh and smile – you never know what is coming around the corner (Thank God!!), but as my poor late mum always said “Don’t meet trouble half way”

Thanks for reading, I hope this is good year for us all!  R x




3 thoughts on “New Year Update

  1. Karen says:

    I am at the beginning of our journey, with my 17 year old son. He does seem to be responding well to medication, but its still so frightening each day. I’m going to go back and read every post, start to end. Thank you for writing this.

    Liked by 1 person

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