Another 'unlicensed drug'

1. Mar, 2016

After the adverse affects of the Perampanel. Consultation with the Hospital. Still awaiting response back on matters..

Ospolot 50 mg was prescribed (unlicensed in the UK) This is an old anti-epilepsy drug primarily used in a few European Countries for the treatment of benign epilepsy of childhood with central temporal spikes. It's been around since the 1950's. It is recommended that blood count liver function and kidney function be monitored initially prior to treatment with Ospolot 50 mg and then at weekly intervals during the first month of treatment and thereafter at monthly intervals. After six months of treatment, two to four checks a year are sufficient.

A small number of patients treated with anticonvulsants such as sultiame had thoughts of self harm or suicide. If at any time such thoughts occur (which did in my sons case) contact doctor immediately. Which as his mum did.

This drug showed side affects very soon after only a few tablets given at night time, with his other medications. This was also noticed by school who with concerns rang me. Very low mood.

Contacted Epilepsy Nurses x2 at two different Hospitals. Still awaiting feedback.

Have received appointments for blood checks which had been asked for prior to this drug being given. 

My Son has just turned 16 years of age but 3-4 years cognitively delayed. Newer up to date Neuro -Psychiatry investigations soon.

I ask why are Epilepsy Medications given out like smarties so to speak! The side effects and toxicity factors are too much on the person. Do they really know what the cocktail of these drugs do to the human body. I have seen first hand the changes in my son. From aggression and self harm to very low unacceptable mood. Giving out the contraindications leaflet for the patients perusal. Why don't the Clinicians etc follow the guidelines given. Clearly here they were not.

Its not right, that more research for Epilepsy is not given the precedence as other illnesses. Epilepsy is not beyond a cure in my view, it's simply underfunded.

Meantime my Child is getting no more drugs. I'm told that Epidiolex CBD is still trialling in the UK. Well where's the difference when they are introducing 'unlicensed drugs' for Epilepsy. Introducing drugs to patients whilst trials are still in progress Etc like Briviact (Brivaracetam)

Do these big Pharma Companies actually do adequate and enough trialling ? Is the truth as a whole on the contraindications of these epilepsy drugs being told to the patient? 

Epilepsy is the world's most common serious neurological illness. Affecting about 600,000 people in the UK. However it's not always controlled by the medications. Putting patients at risk of serious injury even death. Sudep ( sudden unexplained death in Epilepsy )

There needs to be a complete awareness review by global governments on this condition. It needs brought into the 21st Century.

26th March purple day. Epilepsy Awareness Day. What will you be doing to show your support for families like mine? Epilepsy does not discriminate but discriminated against still. The stigma very much still around today although this condition thousands of years old.

Don't be complacent - Don't think Epilepsy cannot affect you or a loved one.

Epilepsy knows no bounds and can impact on you also.

julie clark