Introducing myself

[Guest guest]

Hi fellow keto parents,

My name is Lelani on and my family and I live in Johannesburg, South

Africa. After surfing the internet I came across your group on yahoo. What a

relief to find other parents with similar situations. Reading your archives was

fascinating and so much that I could identify with.

Our story started on 19 January 2002 when I witnessed our son 's first

drop attack. About an hour later another drop attack followed and I

instinctively knew that something was wrong. I thought that it might be

epilepsy. My sister suffers from epilepsy and although I had never witnessed a

drop attack before, as my sister only suffers from tonic-clonic seizures, there

was something familiar about it.

We visited our paediatrician two days later and he started " the tests " . To cut a

very long and painful story short. In the following weeks, it was no longer

limited to drop attacks, but myoclonic (also labelled salaam seizures),

tonic-clonic, absence, " twitches " (I suppose type of myoclonic seizures). We

went through the honeymoon phases with various drugs, thinking they would work

and then being bitterly disappointed.

To me one of the worst emotional trials, was first of all dealing with the

thought that your child has epilepsy and then clinging to the stats that 80% of

epilepsy sufferers supposedly have their seizures controlled by drugs. Only to

find your child is not one of those.

In April 2002 he was diagnosed with Lennox-Gastaut Syndrome, a type of epilepsy

I am sure many of you are familiar with. Surfing the internet searching for

information on LGS was frightening to say the least. The prospects for my child

were too unbearable to consider. On giving the diagnosis the doctor mentioned

the ketogenic diet and not knowing much about it, I almost disregarded it out of

hand. His description of it was horrific. Anyhow when faced with the prognosis

of LGS my husband and I started investigating the keto diet and my son started

the diet in May 2002.

Our time on the diet has been very trying to say the least. has really

struggled to get to 4+ ketone levels and stay there. During this time we have

done so much investigation and discovered so many things that were affecting the

diet.

Only in the last two weeks have things started stabilising a bit and his

seizures have also started reducing. His improvement, I believe is due to an

emotional improvement. We have sent him back to school and this has done wonders

for his emotional well-being and seems to greatly affect his response to the

diet. Due to the slow start we have not started reduction in medication but hope

to start that soon. He is currently on Epilim (Sodium Volproate), Topomax

(Topiramate) and Urbanol (Clobazam). I hope you recognise these drugs because

the names are obviously our SA names.

Anyhow, that is our story. I am so pleased to be a part of this group and hope

to find some answers from experienced parents on the diet and maybe even be able

to provide some answers myself.

Regards,

Lelani on, son aged 4 ketokid.

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