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Freya F012

Freya was born after an uneventful pregnancy through natural delivery. She started having fits with her very first breath. The Neo-Natal Seizures lasted for 24 hours. Tests and scans revealed nothing. Apart from being a late walker, she was a textbook baby. On the 9th of June 2011, one month short of 4, Freya was woken by a seizure that lasted up to an hour. This was followed by many more, lasting as long. Over the next 9 months she was admitted to hospital on a number of occasions. She became progressively weaker, and gradually began to lose functions. She was plagued by allergies, hay fever and asthma and was prone to infections. She lost the ability to walk or even to sit up straight. The use of her right hand deteriorated to almost zero (she is right-handed) and her speech became slurred (she had been an early, coherent, precocious talker -fluent in three languages. And very, very loquacious...!).

 

In May 2012 she was admitted for a Video EEG at Entabeni, Durban, and diagnosed with moderate CP, frontal lobe EP and ESESS –at that point she was suffering over 90% seizure activity during Slow Wave Sleep. After a course of intravenous cortisone, our Freya came back to life. Ten days later she could walk again. She is a non-typical case with an unusual condition, so finding the right treatment has been a rocky road.

 

At present, her EP is stable (1 or 2 seizures per annum) and she is making headway in Grade 2 at NH Prep School with the help of a classroom assistant. The ESESS is still present –the clinical improvement not being clearly reflected in the quarterly VEEG. She has been on at least 6 AEDs –some successful, some not. We then decided to go the keto route. With its ups and downs, pros and cons, we haven’t reached full seizure control yet. We feel that there is a world of unexplored potential in the field. It seems as though the research is still in its infancy. It has however had a marked, almost miraculous effect on her immunity! At the moment she is on Keppra, Tegratol and we’ve just weaned her off Epilim.

NON PROFIT COMPANY   |   REGISTRATION NO 2016/081818/08  |  NPO 174-438

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