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Marchant - the keto kid |
This is the profile of Marchant at Rod Evers' web site Epilepsy in young people . This is an excellent site which has profiles of many children suffering from various forms of epilepsy. It is not especially concerned with the ketogenic diet, but provides extremely useful information on the effects of various treatments, particularly anti-epileptic drugs.
Personal information: Child
Epilepsy information
Now fit free
Medications used (in chronological order)
Phenobarbital
Paraldehyde
Vigabatrin
Corticotrophin (ACTH)
Alternative Treatments
Cranio-sacral Manipulation
Ketogenic diet
Personal notes
Marchant suffered severe hypoxia at birth, and had fits during his first four days. He left hospital after two weeks, and we were told that there was a risk of brain damage. His EEG had shown hypsarrhythmia and severe abnormalities, but we were not told about this, nor warned about the possibility of fits.
Marchant developed well until about three months, although he was difficult to feed, reacting violently and having to have his head held to the breast before starting to feed he also had reflux. Both problems seem to be associated with infantile spasms.
At three months, he could respond to a wave, and "recognised" words like "hello" and "banana". However, he subsequently lost these abilities. He could fixate and follow objects, but often appeared to look in the wrong direction. By six months, he obviously had difficulty using his hands, although the intent was there.
Marchant then had a viral infection, with periods of elevated temperature. During these periods he had fits which were recognisable as infantile spasms (previously he had exhibited twitches, but we had not recognised these as fits). He was taken into hospital and medication started.
When admitted to hospital, Marchant was treated with vigabatrin, on the telephoned advice of a neurologist. His fits immediately started to increase in frequency and severity, but the doctors refused to stop the treatment. As a consequence we started to surf the Internet to obtain information on his condition and treatment. Within two or three days, we were more knowledgeable on the subject than the house doctors who were treating him.
After two weeks we had Marchant moved to another hospital, under the direct supervision of the neurologist. Again, the house doctors would not accept that the vigabatrin could aggravate the condition. We wanted the drug withdrawn, so that Marchant’s underlying fit level could be established as a reference for different treatments. The neurologist would not agree to that, but did agree to taper off the vigabatrin, replacing it with ACTH.
The ACTH was immediately effective, eliminating the fits; however, the side effects were horrific. Marchant had muscle spasms, which caused acute pain, and made him scream in agony for hours. It was only after four days, when we suggested that his pain might be relieved with a muscle relaxant that this was administered. Again, the effect was almost immediate. The neurologist (who has been very constructive and listened to us) also agreed to withdraw the ACTH, leaving Marchant for a period with no medication, and that he should then be put onto a ketogenic diet - which we had found out about through the Internet.
At this time, Marchant was having up to 100 fits a day, each being a salaam fit (simultaneous contraction of all four limbs) with up to 15 spasms each.
The ketogenic diet was almost a disaster. The dietician had no knowledge about the diet, and gave totally incorrect instructions. Fortunately, by now we had acquired a useful amount of information from the Internet, and with the approval of the neurologist, we took direct responsibility for the operation of the diet.
Initially Marchant was on an MCT oil version of the diet (the most commonly used form in the UK). However, we rapidly transferred him to the classical diet, finding it necessary to operate with a 4+ to 1 ratio, in order to get good control. The diet was operated with the absolute minimum of carbohydrates, and some MCT oil. After four months, a carnitine supplement was also introduced.
The ketogenic diet was immediately successful in reducing the number and severity of fits and its effect has improved with "fine tuning". In the first two months the number of fits was reduced to 20+ a day, but the severity and duration of each fit was also reduced significantly. After four months, the fits were reduced to a minor twitch in one arm, and after six months the fits had been eliminated completely.
Marchant remained extremely difficult to feed, and it became necessary to fit a g-tube (gastric feeding tube). He was still frequently sick, which may, in part, have been due to the diet.
In October 1998, Marchant flew to the US. On arrival he became very ill, probably with a viral infection, and eventually he went into a coma. He nearly died, but was revived with a glucose drip. Since his fits did not recur, it was decided to stop the ketogenic diet treatment. This was done without the fits restarting, and Marchant started to eat properly.
Since that time, Marchant has been fit free, with the exception (a big exception) of a status event in November. However, it now appears (March 1998) that he may be developing absence fits. Unfortunately Marchant's feeding problems have gradually reappeared, and it is now necessary to fed him by tube again.
Marchant is developmentally delayed, and has some degree of spasticity in all four limbs. He is a happy child, and captivates every one he meets.
return to Marchant's story
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(update 3.2: 22 January 2003)
(issue 3: 31 March 1998)