The long awaited diagnoses is in: Jackson has seizures. In our world, we call it Epilepsy as seizures are Epilepsy and vice versa. He does NOT have Apnea as the neurologist first suggested.
Wednesday, both Jackson and Laycie went to the doctor for a double appointment. We will have a lot of those in the future. Hope they are ready for us!
Laycie’s checkup went first. He stated she looked great. He was as concerned with me over her seizure breakthroughs. He said that he felt that she was being under-treated for her Epilepsy. He felt she was not on a high enough dosage for control with all the activity going on in her brain. Apparently, she has a VERY active brain which is no surprise to me!
All joking aside, Laycie’s brain has seizures in the that center around the Rolandic region with what are termed centrotemporal spikes. The activity in this area is heavy but it is not the only area that shows activity for her. He confirmed my suspicions that there may be more to it than the simple diagnoses of Rolandic Epilepsy and he is planning to look into the details of that for us.
His choice for now is to raise Laycie’s medicine dosage to 3 pills of Depakote at night and 2 in the morning to see if the breakthroughs become controlled. If she continues to breakthrough or she has any of the signs of side-effects that we had previously when her dose was too high, then we will discuss the next step which will be switching meds. His goal however, is to get her to 3 pills morning and 3 pills nightly at this time.
Once he finished up with Laycie and after much discussion of our strange generational family curse with Epilepsy, he moved onto Jackson. Jax got the same rave reviews of being perfect, as Laycie had gotten. He was a little concerned with Jax’s minor delays and is interested to see what happens with those as we start on medicines.
He asked that we give Jackson more time to develop his Epilepsy, allowing him to have another seizure before starting him on medications but due to him losing his breath and requiring CPR through his last seizure I was not willing to agree with him. No argument, he completely understood. So he sent us home with a script for Jackson for Trileptal. We are starting off very slow and building up so that hopefully (fingers crossed) Jackson won’t have the same side-effect issues as Laycie had on the medicine. He is aware of those effects and is willing to switch Jackson at any sign of them rearing their ugly head!
We left the office with a new neuro that I feel confident in. He was great with both of the kids, made Laycie smile and happily answered all the questions I had, as well as held intriguing discussions on other issues dealing with the Epilepsy. He learned from us and we learned from him.
We came home, filled prescriptions and immediately began treatments for both kids. Laycie is awed at the size of her new medication bottle! It’s super tall! So far she’s doing great with the increase. She was a little bit whiny today but it takes about a week for the tiredness and crankiness of the adjustment to stop. I forsee naps for us in the next few days.
Jackson began his meds last night and is doing great with them so far. He’s a little more tired than normal but acts like he can’t go to sleep at naptime. He’s showing no signs of forgetting anything he knows or stopping speech which were issues Laycie had while taking Trileptal. Since starting his seizures, he’s not been sleeping as well so I’m really hoping the medicine does help with that, so long as he doesn’t have delays from it.
We do have to keep a close eye on them both right now and we are doing that by splitting tasks. Momma is sleeping near to Jackson and caring for him, while I am sleeping next to and caring for Laycie. We split help from Winston and Emmalee and Josh when he’s home. I’m so thankful to have children who are understanding, caring and so helpful with their siblings as mine are! I cannot express how blessed I am by every single one of my children.
We are thrilled with the new doctor, the new changes and the new outlook on this disorder we are forced to live with. Everyone is doing well for now and hopefully I can catch a break to rest a little while. I am one exhausted Momma.