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Take control of your epilepsy and seizures. Seizure management has never been easier.
TAKE CONTROL TODAYWell, it has been quite awhile since the last entry and much has changed. We tried dietary changes and glyconutritionals and phytonutrients for over 3 months. I'm not sure if these had a huge impact or not, but i think they helped a bit. We also removed caffeine and MSG products from his diet. We took him repeatedly for prayer and tried to keep his bedtime and meals routine. Even so, the seizures continued at about 1-2 per month. We kept saying that we would wait a little longer to fill the perscription of Tegretol that the Neurologist had given us, but after 3 months, we decided we would give it a try. Darren was started on Tegretol on October 7th 2006, almost a year after the first seizure. He was extremely emotional but i think this was due in part to him knowing that this was an option that we had really had a hard time taking. Tegretol also made him very sleepy at bedtime and gave him an upset tummy for about a week. After 17 days of gradually increasing his dosage, he broke out in a rash all over his body. His Neurologist advised us to immediately discontinue the Tegretol and to start him on Clobazam. We did this and started increasing the dose until i thought about a conversation i had had with a friend about her daughter. She had told me that her daughter had been on such a small dosage of Phenobarbitol for seizures that the doctors told her finally to take her off of it as it was probably not doing much. When she did take her off it she started seizing like crazy. I wondered if maybe a much smaller dose of the medication would do the job for Darren. We talked to his Neurologist and he said that it would be fine to try this. We were only up to 15 mg/ day at this point, so started to take him back down to 5mg. (His recomended dosage for weight would be 30 mg). Darren has not had a seizure yet since we started the medication and has no side-effects. He is still sleeping with us at night. We are thankful for what seems at this time to be a good compromise that is actually working. We continue to pray for a complete healing for Darren. The MRI will be redone in Feb. We are wondering now if maybe the first diagnosis of BRE was right but his seizures are just quick to secondarily generalize? It is possible that the lesions are just incidental and not the source of the epilepsy... i guess we will, in the mean-time, treat the boy who is in actuality doing quite well in every other way than worry about the tests and "what ifs" of the future. We know that it is God who holds this little one... and His hand is steady.
