Today someone mentioned that families with history of Epilepsy are lucky. That’s a big word: Lucky. It means to be fortunate.
People assume that because a family, like mine, has 5 generations that have Epilepsy and that because I have three children who have Epilepsy, that I am fortunate because I have prior case history to go on and I know where our Epilepsy is coming from.
Let me tell you, that could NOT be further from the truth.
It is true that we do have a strong family history with Epilepsy. We were lucky to know what this disorder was when my Emmalee began showing signs of seizure. I was not a satisfied Momma when she was initially diagnosed as having Febrile Seizures and I did not rest until we had the correct diagnoses.
I was lucky to know that I had had this disorder, to know of the signs, the stigmas and the common misdiagnoses of this disorder to be something less. I was lucky to have a Mother who had suffered through night after night of wondering if I was ever going to wake up in the morning, if I was ever going to be a “normal kid” or if I was going to wake and go into a seizure without her knowledge. I agree, I was very lucky to have those things.
Her knowledge of this disorder helped get me through, but honestly, we are no farther in knowledge with this disorder than we were 34 years ago when I began having seizures myself. We are no farther along in knowledge than my Great-grandfathers family or my Grandfather’s mother was when he went through this as a child. We are no farther along in knowledge than we were when my Grandfather was on three separate medications in an attempt to control this Monster that even now they do not understand.
I am NOT a lucky Momma to have this family history. Having more than one child with Epilepsy does not help me to understand this any better than it did the day I had one child with Epilepsy. What I’ve learned past how to deal and the strength I’ve gleaned from my Mother in dealing with it, I have taught myself.
I listen to my children’s neurologist. I grasp any tidbit of information they have to offer. I can sense when they are full of crap and my motherly instincts are rarely wrong. I force them to listen even if it takes multiple visits or me taking my child’s care into my own hands to make that happen. I do what I must to get my babies the best care possible.
Fact: There is NO CURE for my children. I’ve known this for a long, long while. It was confirmed by our neurologist last week, not without care but in an effort to tell me the truth. It wasn’t a truth I didn’t already know.
Genetic disorders pass through from generation to generation on a gene. Generally, they skip generations, passing down the line but not activated. Patterns like Uncle: niece, Grandparent: Grandson and so on are the common inheritance. It’s very rare to pass from generation to generation directly without there being a gene that causes it. And it’s extremely rare to pass through for 5 straight known generations (we do not truly know how many generations before my Great-grandfather have had this disorder as there is no record).
Because this disorder is passed on a gene in my family, there is NO CURE for us. We cannot edit genetic inheritance. We cannot choose DNA. It’s a flip of a coin as to which child will pass this on and how many of their children will have it. I know at least one of my grandchildren will inherit this. I know most likely at least one of each of my three children’s children will have it. That’s 3 grandchildren, at least, possibly more that will go through this and there isn’t a cure for them.
It can be controlled. A cure could be found for my children dealing with it in their lifetime. I’m not saying that. What I am saying is that it won’t stop with us. It will travel on and curse the next generation with it’s terror.
I may be fortunate to have known what this disorder was for each of my children to start, but as I’ve already stated, I know because I’ve taught myself. The records of my relatives before me are not accessible and even if they were, I doubt they would provide much information. This disorder was hidden from the world. It was not and is still not understood by even the doctors trained to provide care for it. There is no wealth of wisdom to glean from the past history that we have.
Each and every one of my children’s cases are different. Each and every one has been treated like a first time case with no common connection. I am currently pushing for answers, for comparisons, for more information on this disorder and how it relates to us. My goal is not for a cure, but for understanding of how this disorder works and how it affects my family. I plan to pass this on for my children’s future and their children. I plan to arm them with the knowledge to live through their lives with this and be empowered along their path.
This is their life with Epilepsy and the only luck they have is a Momma who will provide them with all she can in preparation for their future in living with this.
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.
Everyone keeps telling me how strong I am. But I don’t feel strong. I feel weak and tired. I feel overwhelmed and unsure. I have no idea how to manage my life as it currently stands.
I’m well aware it will all fall into place. This isn’t my first time dealing with diagnoses and doubts. I have two daughters with Epilepsy and now it’s possible that my son has it too. I know from my life with my daughters that this is only a season and before long it will be routine and balanced again, as much as it can be when you live daily with Epilepsy.
This is normal for us. The ups and downs. The shifts and swings in life. It’s our daily normal.
My girls have never had a “normal” life. All they’ve known is Epilepsy. Winston, my oldest, briefly had normalcy. I cherish those days and I miss them greatly. I realize now I had hoped for the same with Jackson because surely my boys wouldn’t inherit this dreadful monster. I mourn the loss of that “normalcy”.
I remember being naive when Laycie was born. I remember thinking “ok I have my daughter with “E”. Laycie can’t have it too.” I remember enjoying those days with her thinking this monster would never rear it’s god-awful head. But then it did and here we are fighting daily.
I guess I thought the same with Jackson, though I wasn’t quite as naive this time. I have watched for it in him for months. As we passed the four month mark, I breathed a little easier. I let my guard down, even when I knew better.
When I got the call the other night, I just remember thinking “my heart knew it was coming” and “not my baby too”. But my instincts, my Momma heart, my sixth sense have all screamed at me to “be aware” for months.
Yesterday was Jackson’s neurology appointment. The doctor went through the usual questions. We answered them as best we could. He wonders if there is a possibility of Apnea. I tell him, “I don’t know”.
He asks me, “what would you like to do?” Well, doc, I’d like to run like hell and hide my baby. I’d like to have my baby back, normal and pretend this never happened. I’d love to pretend it’s all a dream or there is another cause. Previous history, strong family roots, gut instinct all tell me differently.
This nightmare will not just “go away”. Its here and it’s big as night and day. I chose to hold off on medicating Jackson. I chose to agree to have an EKG for him to check for Apnea and an EEG to check for seizure activity. I do not want medicines to prevent that possible activity from showing up, even though we know it may not anyways. It doesn’t always show for me or my girls when have had EEG testing in the past. I do want the chance to find out.
I’m at war with praying right now. I pray he never has another seizure episode and at the same time, I pray it would just happen and get it over with. Then I’d know what’s wrong with my baby and I wouldn’t sit in fear of him stopping breathing never to regain consciousness again. I’d know. We’d be able to treat him. And life would move forward as “normal” as we could get.
Jackson is back to normal for him. He’s smiling and cute as a button. He’s trying to crawl, learning new words every day and working hard with his sign language. It’s as if nothing ever happened which makes me feel even more like it was a dream even though I know it wasn’t.
I feel so weak and tired from all of this and I know that’s ok! I don’t have to be strong but I have to get through it. My strength comes from God, from Life, from my children. I see them daily and know I must face the days ahead for them, even when I want to hide from it all. Hiding won’t get a diagnoses or treatment for my son.
This is life. This is the raw emotion of a Momma who is fighting every day to provide a normal life for her children who didn’t ask to battle a disorder called Epilepsy that generations have carried and passed on. This is our daily life and our “normal” and I chose to be blessed by it even when I’m at my weakest.