We had to call 999.
Jah had a strange seizure, we had a mad dash in an ambulance to the hospital. This was 1/3 of the way into the wean. The doctors witnessed and labelled Todd’s Paralysis but no one (including me and my husband) managed to witness a fit at all. The Todd’s Paralysis lasted 3 hours and really frightened Jah. The whole of his right side became limp he was unable to move his arm or leg and his speech was very slurred too. It slowly wore off and the hospital sent us home without treating him further nor giving any further advice. They just said that we could continue the wean it was probably related but it was up to us if we wanted to stick to the current dose or continue the slow decrease.
After much thought I decided to continue his slow wean off the Keppra Medication. He is now on 2ml AM and 1ml PM. This is half of what he was on at his last consultation. I decided to continue because during the first gradual wean off Clobazam, which he had to take for a whole year, he seemed to have withdrawal fits. I know it sounds quite odd, but with each step down he’d fit then once his body had adjusted to the new dose the seizures would stop. The same would happen again and again with every step down. It was almost like he had cluster fits from the withdrawal, but once the Cobazam medication was out of his system the fits settled down and didn’t get worse. The type of fits he would have during the Clobazam reduction were mainly drop attacks and myoclonic jerks. These have not returned since the Clobazam has gone from his system and he has continued on his Ketogenic Diet.
Since Jah has been on a reduced dose of Keppra and following the Todd’s Paralysis episode, he has improved with regard to his temper and mood swings. I can actually say he is delightfully predictable, which for us is really quite a change! Jah is really enjoying his routines and understands a lot more clearly what is supposed to follow what. For example he is totally aware of the bedtime and morning routines without prompts he knows what is next especially with the morning routine, however weekends are treated the same as weekdays in our house because routine is quite an important thing in our family. It seems that learning through repetition has worked now the Keppra is going.
Our meal plan for Jah.
It is so vitally important for Jah to get the right amount of Carb at the right times during the day. Especially now, his medication he takes is less than half of what he was on when he first started the diet in Aug 2011. It seems so long ago now I have written it but my memories of those days are so fresh in thought.
The daily feeding plan for Jah is given priority over all. Wherever we go we take food with us for him and there is no place we will deny him his food at the times and quantities he requires them.
Here is what he ate today, every day is very similar.
06:45 Cup of tea made with 15ml double cream and hermaseta sweetener. – 1/2g carb
07:00 Two boiled eggs with a knob of butter. – 0g carb
09:30 10g crisps. – 5g carb
12:00 Beef meatballs (made by hand with just mince beef), Bovril gravy, 20g Carrots, Green beans and 20g Apple. -3g carb
14:30 Sugar free Jelly and cucumber – 0g carb
16:00 Half can Tuna with 1 dessertspoon Mayonnaise 1 table spoon olive oil and 1 teaspoon vinegar -1/2gcarb
18:00 Roast Chicken breast, 30g boiled potato, broccoli, cauliflower, olive oil dressing. – 5g carb
19:00 Special Cocoa – 1g carb
Jah drinks 2litres of water and sugar free carb free squash everyday, this is to help prevent renal stones, from the high protein and fat intake.
Thanks for reading,