surviving epilepsy | Luv'N Lambert Life

It has been a year since Jackson’s battle with Severe Involuntary Breath Holder Spells with Epilepsy began. Time has passed quickly, yet there are days when I still feel suspended in time. This year has been hard on our family but we are still moving forward.

It’s hard for me to believe that a year has passed since this journey began for us. I can tell you that each time you find out your child has some disorder, it sucker punches you deep in the gut. Having multiple children with health issues doesn’t make it easier and you genuinely hope with each child that they will be healthy and “normal” like children should be.

We are finally at a point in our lives where we are able to breath again and are finding balance. Jackson’s last medicine increase has his breath holding spells controlled for the most part and seizures have decreased with the decrease of IBHS episodes. I could not be more thankful for this reprieve no matter how short it may be.

When you have children with disabling health issues, it becomes hard to function and plan your day to day activities because you do not know what to expect or even how to plan since you cannot guess when a seizure or spell will happen to them. Events get cancelled, schoolwork is put off, living becomes second to surviving. This has been our life for the last year.

At this stage, I’ve learned that seasons are short and each quiet period must be packed with catching up on the things we’ve had to put off. Housekeeping is done in these time periods, restoring balance to the home so that we are ready for the next unsteady path. Schoolwork is also done during these times so that when needed breaks come we do not fall behind. Life and living come first for a while and surviving does become second even for a brief time.

After living this year surviving, we are ready to live life again and move forward, hoping the days remain balanced and settled for a while. Whatever happens, I will take what I can get and enjoy these moments while we have them for they are gone all too quickly.

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.

Balancing Life {Epilepsy Awareness}

A New Doctor {Epilepsy Awareness}