| Jessica was born on the 15th April 1992. There were no problems or complications with the pregnancy or birth. She was a happy baby, developing well, then in October 1992 her life changed. She was sitting on the bed, when her eyes suddenly rolled back and her head rocked. It was so brief that I wondered if I had imagined the incident. After three more of these episodes, the paediatrician decided she should have an E.E.G. Little did I know that this would be the first of many.|
By the time she was 4 ½, she had endured numerous E.E.G.'s, blood tests, MRI and Lumbar Puncture. Her seizures consisted of absence, atypical absence, myoclonic and atonic drops. The anti-epileptic medication she was given created severe side effects that slowed her development considerably, yet still did not reduce the 50 plus seizures she was having each day. Added difficulties she experienced were cerebellar ataxia, muscle weakness, poor balance and hand tremors. Other problems included aggression, insecurity, bed-wetting, poor circulation, heat sensitivity, dummy sucking, inability to close her eyes and regular waking every night.
In November 1996, Jessica was admitted to the R.C.H. for 3 days of 24-hour monitoring. We left hospital with a wonderful gastroenteritis where she stopped eating for over a week. (I could not even get her to take her medication.) Even though she was very sick, her seizures had decreased greatly. Because of this, our neurologist offered the opportunity to try Jessica on the Ketogenic Diet. A consultation was organised with the dietician. She held little hope for Jessica having any success with the diet due to her eating habits and food favourites. She had always eaten as much or as little as she wanted each meal and some days would eat a lot while other days very little. Her favourite foods included bread, cereals, pasta and her favourite (and only) drink was milk.
Even with this knowledge, on the 3rd March 1997, Jessica was admitted to the Royal Children's Hospital in Melbourne to prepare for the commencement of the diet on the 5th March. She started the first of two days fasting, still having seizures. She refused all fluids offered to her. She was becoming dehydrated and hypoglycaemic. By the afternoon protocol had to be ignored and the neurologist ordered cordial for her. That was the last time she had a seizure.
The change in Jessica was so dramatic. Her computer teacher wrote, "I am amazed at the difference in Jessica". Her early intervention teacher wrote, "I have noticed a dramatic change in Jessica's behaviour and disposition".
The ketogenic diet is a medical therapy, not a fad diet. The ketogenic diet is not something you can do on your own." |
(Taken from "Seizures and Epilepsy in Childhood A Guide for Parents").
I spent endless hours, sometimes till 4am, creating new meals. Rather than the normal 3 meals a day that you would feed a child on this diet, she required 6 meals a day. Each meal had to be weighed and cooked individually. You cannot prepare one big meal, then divide it into six. Some meals had 15 individual foods in them. (Normally on the diet it is recommended to use 4-5 individual foods in a meal.) I felt my entire waking (and sleeping) hours were consumed with calculating, weighing, preparing, cooking, feeding and washing dishes. I also had a 10-month-old son with his own individual needs including being fed.
The diet is extremely time consuming. A total commitment from all is required. Family life is changed considerably. Spontaneity is removed from the vocabulary. A doctor once described this diet as "the diet from hell". Living with a child who has numerous, uncontrolled seizures has to be lived to truly understand the anguish experienced. The diet is made more difficult due to the lack of knowledge and support available in Australia. In America, there is a network of support and expertise from professionals to parents - working together. Without the support from my mother, and a computer donated by my father, as well as a program designed by my father to calculate meals more easily, this diet would have been virtually impossible to maintain. It is essential for anyone attempting this diet to have a support person who can ease the continual demands. I did however find that the pressure eased after a while, the unknown suddenly became known and life settled more into a routine.
Jessica's good-natured acceptance of the diet was unbelievable. In planning for both her 5th and 6th birthday parties, Jessica ensured that her guests would not miss out just because of her diet. She insisted that the party food should consist of sausage rolls, party pies, cocktail frankfurts and she helped make the chocolate crackles, honey joys and fairy bread. During the party she even handed around the food without being tempted to "sneak" anything for herself. She requested an ice-cream birthday cake and I managed to include 10 grams into her meal. I tried as often as possible to include into her meal any foods she requested. (Even if this was only 2-3 grams. She preferred some rather than none.)
The total effectiveness of the diet not only gave reason, it also meant she became drug free on the 1st of July 1997.
Most children will not have the same success as quickly or with such acceptance (some not at all). To see your child's eyes light up though, make it worth the effort.
We were told by her O.T. that because of her hand tremor she would need a computer for school as she would be unable to write. Her first day of school in 1998 she came home with a drawing. I noticed her name written on the work and I asked her if she had written it. She replied with conviction in her voice "Of course I did." She continues to do well at school and enjoys reading, writing, drawing, computer, tennis, swimming, horse riding and walking her dog.
On the 18th January, 1999 Jessica was fully weaned from the diet.
There are still foods that I need to restrict from her meals and stress needs to be low but she is enjoying a wonderful life of no medication and now being able to eat like others. Her 7th birthday party was so wonderful for her as she was able to eat all the party food, just like her friends. She said to me at the end of the day, "Mummy, this was the best birthday ever."
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