Joseph, Noah, Zoe Joy, Elijah, Nathanael

How the Ketogenic Diet has cured infantile and juvenile epilepsy


Nathanael was born to Daren Lee and Tiffany Tang on 22 September 2004. He was their firstborn and the first grandchild in both Daren and Tiffany’s families.

At 4 months old, his parents began to notice he was not responding appropriately. At their usual periodic check-up, the paediatrician recommended them to get him seen by a neurologist.

He was sent to Universiti Hospital (UH) for his first MRI scan. They also ran an EEG on him, to read the activity in his brain and they discovered some abnormal brain activities.

They then went to see a paediatric neurologist in Pantai Hospital, Dr Malinee Thambyayah. During the check, Nathanael’s first visible seizure was noticed by Dr Malinee. His seizure, or fit, was unlike the violent or foaming kind his parents thought epileptic fits were like. Nathanael’s whole body would just tense up and his eyes roll back. His arms would flail about involuntarily like a person trying to swim the butterfly stroke.

Dr Malinee administered a muscle relaxant on the spot. He was admitted into Pantai Hospital immediately, where he stayed for at least 2 weeks. Dr Choy Yew Sing was called in on a special consultation on Nathanael’s second day in Pantai. He was actively involved in the follow-up and management of Nathanael’s condition.

Like detectives, they investigated and considered many factors and also wondered if it could be a metabolic disorder, the big baby syndrome, and a whole list of other neurological disorders.

A battery of tests were conducted on Nathanael, including the very painful lumbar puncture. The cost of that hospital stay and all the tests and medication came up to more than RM30,000, which was not covered by insurance. On hindsight, probably not all the tests may have been necessary after all.

They continued to follow up with the same doctor, and experimented with 5 to 6 different drugs, to no avail. They put him on a combination of drugs; it also failed to stop his seizures. By then, Nathanael was having many episodes of seizures, up to 70-90 visible seizures daily!

Due to financial constraints, Dr Choy recommended for his case to be referred to Hospital Kuala Lumpur (HKL), a government hospital, for long term follow-up. Dr Choy also suggested consulting Prof Dr Ong Lai Choo, who was at that time attached with Hospital Universiti Kebangsaan Malaysia (HUKM). She was one of the top neurologists in Malaysia.

Again, they tried a few drugs on Nathanael, which would work at the beginning and then after a while, the seizures would recur and his condition would show no improvement. Some of the drugs had bad side effects as well; eg Vigabatrin, which is known to affect the visual field. Nathanael was then diagnosed with cortical blindness, ie a loss of vision in a normal eye caused by damage to the brain’s occipital cortex.

By then, he was 8 to 10 months old. He had low muscle tone. He was what was referred to as a “floppy baby”, unable to lift his head or turn over. He underwent many therapies, including hydro-therapy, speech therapy, vision therapy, physiotherapy and occupational therapy.

Meanwhile, his mother, Tiffany, had done her own research and ordered a book on the ketogenic diet from the US. The book said that if 2 drugs had failed, it was very likely that the others would too, and it was time to try this diet. This ketogenic diet was a high fat diet and Nathanael was placed on the highest fat ratio.
He was admitted into HUKM under the consultation of Dr Choy. The food was prepared by the hospital kitchen and administered like medication. They were very strict with this diet and the dietitian weighed every item to the single digit of each gram of food to ensure they complied with the fat to protein ratio of 4:1. He stayed on for 3 weeks in the hospital and ate 5 meals a day, all high on fats.

The second week Nathanael was on this diet, they saw great improvement in him. His seizures diminished greatly and were soon eliminated completely for many years.

In fact, Nathanael had such a successful recovery with the ketogenic diet; he became a study case for (West Syndrome) infantile spasm in HKL and doctors often referred to him as a miracle child.

The book Tiffany was reading had said that only about 25% of children given the ketogenic diet saw a significant drop in their seizures. However, in Nathanael’s case, there was total elimination of epileptic seizures.

He was on the ketogenic diet for 2½ years. He went off all medications and off the diet, and he had no seizures for 6 years. He regained his sight and his muscle strength with regular physiotherapy.

His seizures recurred in 2012. He was readmitted into hospital and started on the Epilim drug, and has been on Epilim till the present day. They doubled his dose in 2015 and his seizures have stopped completely since then.

His mother says one cannot tell that Nathanael is not normal by his appearance or movements now. Only when there is verbal interaction with him, one will notice his words are measured and speech is delayed.

Watch Nathanael’s progress at his parents’ blog: www.darentiff.com or follow him on Facebook at facebook.com/nateljz.

Article written by
May Heng.
13 Aug 2015.
Source: https://www.facebook.com/notes/may-heng/how-the-ketogenic-diet-low-carb-high-fat-has-cured-infantile-and-juvenile-epilep/10205309845530507


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