A Miracle!

Following on from my last blog when life with Muir was out of control because of his behaviour, I have to tell you that a miracle has happened.  Muir is on a combination of three drugs - a cocktail, I suppose.  One of these drugs - stiripentol - is a  wonder drug that was introduced to Muir's medicines 18 months ago and instantly brought his epilepsy under control for the first time in his life.  Additionally, we were then able to reduce the amount of the other two drugs significantly. All of that was wondrous at the time.  Life changed dramatically for Muir and the rest of the family and for the first time we began to enjoy a quality of life not experience in a long time.  Muir was able to travel abroad on holiday with us for the first time in 6 years.
 
Then came puberty and the behavioural problems, as described in my last blog.  Muir's doctor prescribed melatonin and that improved his sleep pattern a little.  But his behaviours were monstrous.  He was out of control and I was not coping. We were desperate.  I did some research on his drugs and discovered that he was evidencing all the symptoms of an excess of one of his medications - not the stiripentol. That included a low white blood count and low platelet levels.  I immediately stopped the offending drug - not a course of action "ever" recommended by the doctors.  However, I was conscious that we had to take drastic measures to get a result and whilst anti-convulsant drugs take effect very quickly on the way up, they are much slower to reduce in effect on the way down.
 
We missed four doses of just the offending drug and then I reinstated it at half the original dose.  There are two significant things to report.  Firstly, during the course of these changes to medicines there was still no sign of seizure activity; secondly, his behaviour improved almost instantly and dramatically. Days passed and he continued to improve with no sign of seizure activity.  I then decided to reduce the same drug again but this time only by half again.  We were down to just one tablet twice daily  - from 8 twice daily before the introduction of stitipentol. Still no seizures and his bloods were satisfactory for the first time in months.
 
Behaviours continue to improve.  Language is prolific.  He is alert, aware and responsive in a way I have not seen before.  Even school report the same and they are unaware of the changes I have made. I am thrilled with this outcome.  When I consider where we were just three weeks ago, this is a miracle.  Stiripentol has enabled his normal drug regime to be reduced dramatically - down by almost 90%!  I have my son back at last and he is a joy.
 
This is not a course of action I am recommending to anyone without consultation with a doctor but there is no doubt that stiripentol is a powerful drug. It is only ever prescribed in combination with other specific drugs and for certain types of epilepsy.  That said, when stiripentol is prescribed, the maximum benefit is achieved the lower the dosage of the other drugs given in combination.
 
I have now taken advice on this and my theory has been confirmed!
 
Best wishes to all,
 
Ann Maxwell
Founder and mother of Muir