His Neurologist leaves after 17 years of seeing Son. Off to pastures new.

24. Apr, 2017
24. Apr, 2017

Who will see us now? The Neurologist who has seen my Son since 10 months old new position elsewhere.

It will be one of the Neurological Team. Well we did get an appointment with another. April 2018.

No way are we waiting this long. Phoned them. Explained far to long away. Maybe if Seizures were controlled but even then.

Tests he had taken had to repeatedly ring hospital for. His blood not clotting properly. Don't worry! Of course I'll worry. This carries all sorts of contraindications. Is it the years on strong cocktails of drugs? These affect so much ie Liver, mood & cognitive functioning etc.

Stool samples taken for testing. Appropriate tests not done.

Now bloods to be done 3 months. Stool samples again. Does anyone truly care.

I've reiterated so many times before. Epilepsy is more than just a seizure. Why don't others get this?

2 seizures at weekend from sleep. Off school today. Hardly a full week in 2017 at school.

We are a bit left in limbo. Waiting on others to make decisions if any on Lewis medical management. He's between Paediatric and Adult Services.  It's so damn well ambiguous and unfair.

The system sucks The whole criteria and discrimination around Epilepsy sucks. Why can't the Neurological experts get it right? Why can't the research find a cure for Epilepsy? 

These drugs for seizures carry so much toxicity factors for the person.

Pregnant women need to be careful especially with Sodium Valproate, now proven to be responsible for birth defects. You should speak with Specialist if of child bearing age. Don't just stop the Medication.

I hope you are all bringing about Epilepsy Awareness - it's the only way to get the word out there.

Take care.

Julie x

 See link below about Pregnancy and Sodium Valproate. 

 http://emma4facs.uk/