When we first started the diet, and it was working, we weaned ‘Buddy’ off Phenobarbitol, and Zonisamide, two very nasty but necessary seizure meds. They saved his life, but left him wiped out. The ideal way to wean meds on the diet is for the child to grow out of them. As the child gains weigh the dose to weight ratio shifts until the med level is no longer medicinal. If the diet is working you are golden, if not, you get break through seizures. It is a process rife with hope and fear.
When ‘Buddy’ was weaning from phenol, we were still pretty overwhelmed. I had never looked at the side effects of the meds, because I knew I didn’t have any choice, so why burden myself with extra worries. Because of this, we didn’t realize until after the fact that a side effect of withdrawal from Pheno is insomnia. For 6 months ‘Buddy’ went to sleep at 7 or 8, slept for 4 hours, woke for 3 hours, slept for 3 more and did not nap. A total of 7 hours sleep for a 6 month old baby. I honestly don’t know how we survived. We did swap nights and wear earplugs on off nights but still, it was tough.
Sleep is still tough. We had a glorious stretch of near normal sleep patterns, but not currently. I am writing this at 5am having been up since 2am. This has been the pattern for the last 2 weeks. On a good night I can get him back to sleep in two hours. On a bad night, he is up for the day at 3 or 4 am. I don’t know for sure, but I think we are in withdrawal again. We have not raised med doses (Banzel and Lamictal) in over a year and a half. I am about to take ‘Buddy’ on a trip out of town to visit family, and he is not sleeping well. The shadowy monster in the corner is the threat of seizure. There is not really anything I can do that we don’t already do; keep rescue meds handy, keep a close eye on him. Don’t leave him with anyone who can’t handle a rescue. All I can say is I REALLY hope it doesn’t happen for so many reasons.
Like I said earlier, it is a process rife with hope and fear. Fear of regression in development. Fear for his health, every seizure carries risks of brain damage since they are so long. Fear of social impact, seizures are scary, many people protect themselves by creating distance. And the biggest fear which shall remain unnamed. But it is also a process of hope. ‘Buddy’ is working hard at pressing into his legs to stand. He has recently figured out how to wave hello and goodbye. He is noticing cars, trucks and trains. He is able to push the icon on the phone to activate his favorite video. He is more alert and interactive every day.
If he is able to stay seizure free on the diet without meds, then we are one step closer to being one of the lucky ones. We pray for that every day in a million different ways.