Mixed Emotions -Good Days & Better Days


Ok so today I am a little bit more cautiously optimistic.  Since my last post, (which I will be honest was written on a not very good day!!) quite a few things have happened.

We have had two appointments with a Clinical Psychologist who gave both my husband and I some really good advice on how to try to keep Luke’s moods stable – not too over excited and not to allow him to get too “low”.  Since he has been taken off Keppra and we introduced a Reward Chart for both he and his sister we have not seen any of the worrying behaviour that we had experienced in the month previous and he seems to be feeling really good about himself and enjoying a little bit more one on one time with his father.

This was one area which really has suffered recently, basically my husband lost all confidence in how to manage Luke, and I felt he was continuously losing his temper and therefore exacerbating situations, rather than resolving them; it was really affecting our relationship also.  I definitely think talking this all through with the Psychologist helped us to realise these issues are faced by a lot of other parents in our situation, and some very subtle changes around family time, having family meetings, shared meal times etc. has really helped!

With regards to medication, Luke’s Paediatric Neurologist has decided to re-introduce Trileptal on a much lower dose, if you have read some previous posts you will know that this was the first Medication Luke was prescribed which in conjunction with Frisium had gotten Luke’s seizures under control, and almost completely seizure free.  However on day 9, Luke developed a sensitivity/allergic reaction to the medication and came out in a rash.

Today is day 9 since we have reintroduced Trileptal on a reduced dose (in conjunction with a significant dose of Frisium and Vimpat), and so far no sign of the rash!  He has also been seizure free for two days and two nights – which is a hugely significant result for Luke, considering in my last post just over two weeks ago Luke had suffered 15 seizures in 24 hours.

I am continuing to pray and cross my fingers – but I know too in the back of my mind that it could be 30 days in before the rash could reappear, so not counting our chickens yet!!

Of course nothing like a little extra drama, my 73 year old father fell on Saturday and broke his hip.  Thankfully I was with him and although he had to have a full hip replacement on Sunday, the operation went very well and he seems to be recovering quickly so far – it has certainly contributed to an increase in my stress levels!!







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