Tuesday, May 23rd, 2017

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Tough first week of school

Ian had a rough week. It didn’t start badly but by Wednesday evening he started having seizures. This means school activity stops and we all focus on keeping him comfortable. From our daily journaling, there is a clear cycle. We usually see seizures about every 5 weeks and they come in clusters for usually 48 hours. This time they lasted 72 hours. He doesn’t eat much as his tummy really seems upset and he’s typically quite lethargic and often sleeps. However, this time, we took him to see his neurologist on Thursday and he had a seizure in the office. The doctor convinced us to try a drug called Clonopin to stop the seizure activity. The drug usually makes one more sedate which wouldn’t matter since the seizures do that anyway. But the drug didn’t sedate him but instead stimulated him. He only slept 5 hours on Thursday night! He couldn’t stop moving. Yes, it stopped the seizures for about 8 hours but then I was afraid to give him another dose in the middle of the night for fear he would NEVER sleep. We did try a second time on Friday and again, the response was stimulation and stopped the seizures for about 8 hours. But then on Saturday after the medication was out of his system, he had a few more. They should have stopped by Saturday according to our documented history.

Here’s my theory (as a mother that has watched Ian have these episodes for 6 years now.) Ian, for some reason, needs to clear out the extra energy that gathers in his body over a period. He needs to do a type of energetic clearing or cleansing and if the process is interrupted by a chemical to stop it, his body will just wait for the chemical to wear off and then proceed with the necessary clearing until the process is complete for that cycle. Then he goes along for another 5 weeks until the energy builds up again to the point where he needs to clear again. I know, very out there but it totally resonates and makes sense to me. After the seizure clusters, we have consistently observed that he’s clearer, more cognitively aware and connected. We don’t like the seizures and we definitely don’t want him in any danger or have damage occur because of them. We do know that’s he’s an incredibly sensitive being and he doesn’t handle chemicals the way they’re intended. My goal is to figure out a way to reduce the amount of energy that he gathers. I’m working with the energy healer to solidify his energetic boundary to make him more resilient.

Genevieve has a theory that it has to do with an ingredient Aspartame which is in his allergy medication. We just started the medication in late Nov right before a flurry of seizure activity then started another right before this last flurry. Hmmm, interesting.

Deep breath, lots happening in our little boy’s body and so many opinions and suggestions come our way from intelligent, educated experts. At the end of the day, Lowell and I have to assimilate the information and make the best decision we can based on what we think is best for Ian. We have to continue to try and trust ourselves.

Today though, he’s feeling better despite the continuing reflux!! This morning we had a very productive meeting with several members of Ian’s team – the OT, our RDI consultant, and Ian’s teacher. We’re moving forward and continuing to search for the answers.

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