Jadyn’s story
Jadyn David Heunis was conceived after 5 years of trying through multiple fertility treatments. He arrived after the 5th attempt at an invitro solution (IVF), in light of our thankfulness to GOD we named him JADYN “GOD has Heard”. For 4 blessed and wonderful years he had no hint of epilepsy until one morning when he went sleep walking and walked into the door frame and 2 weeks thereafter, he started dropping to the ground. We took him to our pediatrician who did several tests on him and sent us home after not diagnosing anything specific. The following day we had to do blood tests on fasting and when we woke him up at 6am, he stood up out of bed and in 10 minutes he’d had 4 drop attacks. We rushed him through to emergency in complete panic having no idea what was going on with him and from then on the frequent hospital visits started.
On the 20th April-2010 our son was diagnosed with epilepsy. It started with Drop Attacks and this would result in him falling and could end in a mild or extreme injury, where he would bounce his head on the tiles. This situation continued increasing in frequency and most concerning the epilepsy broadened its profile to include other forms such as Petimal seizures (absence seizures whereby he would be absent for several seconds – non cognitive) and Tonic Clonic seizures (convulsions) which would last for up to a minute. My son was finally diagnosed with MAE (Mycyclonic Astatic Epilepsy or DOOSE Syndrome) effectively a combination of all three types of epilepsy.
Over a period of several weeks it had deteriorated to the point that he would have in excess of 30 attacks per day. The natural steps which followed included multiple blood tests, scans and several excursions to the hospital. He would have several Tonic Clonic (convulsion) attacks which precipitated a visit to hospital and the administration of a loading dose provided intravenously to stop the convulsions. Jadyn reached a point where he was petrified of needles and hospitals. Due to the nature of the condition there is no single cure from a medical point of view, it was a matter of trial and error with various medications. This resulted in Jadyn being on up to 6 different types of drugs daily. He was so sedated he battled to communicate with us and was relegated to spending the day sitting on the couch unable to go to school, play or even eat on his own.
After my neurologist suggested several times to try the Ketogenic Diet we decided to try it and started the diet on 26th July 2010. After wanting to give up on several occasions due to the dedication it takes as parents to adhere to the specifics, Jadyn was completely seizure free on 12th October 2010! A date we will celebrate for the rest of our days! We struggled in the first couple of weeks to fine tune the diet to what types of food he liked and also to get his ketone levels up to where our dietician wanted it. We initially tried giving him 4 meals a day but have now started giving him 5 meals a day which are smaller in quantity but Jadyn is happier and more content with the frequency of his meals. He drinks his weighed oil as if its cooldrink to him. I have created a muffin receipe using Ketobake powder, eggs, oil and macadamia nuts and he can’t wait for his 10am snack every day. We also take Jadyns blood once a day to check his ketone levels and glucose levels and sometimes when I forget Jadyn often reminds me to take his blood! He is in grade 00 and attends a normal main stream school that support his diet and snack times are not an issue for him when all the other children are eating their food around him. He continues on his medication which is epilim, topamax and zarontin but we continue to reduce his meds on a monthly basis and our goal is to have him off all his medication by December 2011. We believe that we have succeeded with this God-sent diet as we have complete support and guidance from of our dietician, Tuschka du Toit as she advises us on how to fine tuning the diet.
This month we celebrate 4 months of being seizure free, not even a hint of a seizure…….
He is running around
He is riding his bike without side wheels
He is swimming like a fish
He is back at school
He is singing and laughing again
He has that sparkle back in his eyes……………
God is a God of miracles – we live it everyday with our Son 🙂