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A few weeks ago Laycie was having a few strange things going on that led to a call to her neuro. The symptoms she was having could be related either to her seizures or her medicine but it was enough to concern me after a long period of watching to see what happened next.
The neuro told us that we could not raise her medicine dosage any more. She decided that she would like to test Laycie for a longer period than normal with an overnight EEG and sleep study. I was more than willing to agree.
So this week Laycie, Daddy and I are off to the Children’s Hospital at MUSC in Charleston to spend the week. Grandma will be home with Bubba and MiMi, keeping things going while we are away. Honestly, you’d think we are going on vacation with the amount of luggage we have ready to go: clothes, medicine, private needs, toys, movies, and more. It takes a lot to keep a 4 year old busy during a 3-5 day hospital stay in a room that she cannot leave without a tech to accompany her.
Daddy has to take off work to accompany us on our journey. His bosses are not thrilled with this but he knows Laycie and I both need him there. Being 5 months pregnant doesn’t make this trip any easier on me and being alone with a tired and sometimes very sick Momma doesn’t do Laycie any good either. Needless to say, we are both happy to have Daddy going along with us.
So tonight we have packed and are ready to go. The kids are asleep and we are soon to follow. Tomorrow we wait until we get the call saying our room is ready and then we will head off on our week-long journey in an effort to overcome our battle with Epilepsy.
What are your plans for this week??
I woke up with a mild migraine this morning and knew I would have to return to the bed. I hate days like this. Migraines are the unfortunate side effect of having had Epilepsy as a child (for me and for my oldest daughter). It’s often hard to tell if a migraine, for me, is caused because of an imbalance (brain) or because of my sinuses, since both both me at times. I believe this one was from an imbalance due to stress.
The last month as been an extremely busy one, filled with ups and downs, going here and there, and barely any time for rest. This weekend was the last busy one for a month and didn’t allow for a lot of rest, though there was a tremendous amount of fun for all involved. I’m thrilled to have been a part of it and I’m just as thrilled for it to be over with.
Dealing with a migraine is never fun. Waking with one this morning, I knew I would spend most of my day in bed and I certainly have. After napping to rid myself of the main effects of this major headache, then checking on my sweet children, I have gotten caught up with my world online. There wasn’t much else to do while waiting for my head to completely ease off.
I find that taking my allergy meds, which I do daily, taking an Aleve, drinking a Pepsi and eating a Hershey’s chocolate bar, my headache will sometimes disappear, especially if I do all of this early in the process. Today it’s certainly worked for me, though I know from previous experience that it can return at any time. A good nights sleep is what’s needed to really keep this mild migraine from returning and turning into a Super-Sized-Sick-All-Around Migraine.
As I think about all my girls will go through with their Epilepsy and it’s atrocious after-effects, I feel sad and a little guilty that I have passed this on to them. It breaks a Momma’s heart to know her children have something like this hidden illness that causes them to not be completely perfect health wise. It breaks my heart to know all of the pain they have endured and will endure because of this disorder throughout their lifetime. One never knows the effects Epilepsy will have on their life. Until you become a parent with a child who has a disorder like this one, it’s hard to understand HOW much it truly does effect a child’s and a parent’s life.
Growing up, I knew the effects of Epilepsy as a person living with it. I, thankfully, don’t remember my convulsive seizures but I do remember the tests, the weirdness I sometimes felt when I had an Epileptic episode that was non-convulsive, and the sadness I felt when a teacher would yell at me because I wasn’t “listening”. (No I wasn’t listening because I was seizing and you didn’t know it.) The impact of this disorder on my own life caused me to relearn everything I could for my children when it became their turn to suffer through this. It also impacted my decision to homeschool my children so that they wouldn’t have to deal with an imperfected educational system set up for millions of children who are considered normal.
I’m thankful that the effects of our busy season, the Holidays and Birthdays, has had mild effects on all my children. I’m thankful that it’s me sitting here with this mild migraine instead of the girls. I’m thankful to know what they go through and know how to handle it, for the knowledge God himself has bestowed upon me.
Recently, I had a friend tell me I home school because I’m afraid to let go of my children, that I do it for myself. Maybe, partially, I do. I know how easy it is for God to take a child home to Him. I want to enjoy every selfish and selfless moment I have been given with these three beautiful children by Him. I am afraid to lose my girls to this disorder, to let them go into an imperfect institution that is not prepared to handle their seizing IF it was to happen. I cannot live with that maybe, that IF. I would never forgive myself if something were to happen that could have been easily prevented at home, under guidance of someone who knew how to handle the effects of their disorder.
It’s easy for anyone to look at my children and say “oh they look normal”, or “there’s nothing wrong with them”. Looks can be so deceiving and yes my children’s respective disorders could be much worse than they are. I’m thankful everyday that they aren’t, that I am able by God’s hands to be able to deal with each of their individual special needs. The life of a Mom with special needs children is exhausting and it never ends. There will be no end for my girls with this disorder, even if it goes into remission. Like Cancer, Epilepsy can always return, unexpectedly at any time. Until the day I die, I will be on my knees praying it goes away and does not return but even this is not a promise it won’t. However, when it comes up, when they have bad days, and good ones, I’ll be there beside them battling away the demons and receiving the love and hugs and happy smiles that come.
For those wondering, my son does not have Epilepsy but he does have ADHD, as does my step-son, which is a disorder very similar to Epilepsy but instead of resulting in seizures that shut their bodies down, as Epilepsy does, ADHD results in hyperactivity and impulsiveness that is caused by over activity in the imbalances of the brain. My son is not medicated for his disorder but my step-son is. My son does not attend Public School because of his disorder and also his sisters disorders, while my step-son does attend, by his families choice.
Both these disorders, Epilepsy and ADHD, treatments are very similar and can sometimes (not always) be controlled without medication by adjusting your child’s schedule, sleep patterns, and home environment as my son and oldest daughters are controlled. My youngest requires all of the above and also medication to control her seizures at this time but as time goes on I hope to be able to remove the medication and control her episodes through the same balance and structure provided for her older siblings. Only time can tell what will happen with this.
When my oldest was going through the days and months of her first seizure, my brother told me the wisest piece of advice I know. He said, “We dealt with this with you and made it through and we will deal with it and make it through hers too”. Funny that as time has gone on, due to his own life, we are no longer close, meaning he is no longer dealing with it (or my sister either for that matter, both because of their own choices in life) but his words have always stuck with me and they are definitely true. I have made it this far, they have made it this far and I will keep fighting with and for them for all the things they each need to over-come their each of their special needs.
They have changed my life for the best and I would never have it any other way. I’m thankful for the gifts they are in my life. And if you’ve made it this far, thanks for reading my blah blah blah blog.
Have a blessed day!
Having Epilepsy generally means taking medicine to control it. There is a large range of available medications for control of seizures and each comes with their own side effects. Some of the side effects are managable and others are not, so you should always read up on a medication, ask questions to both your doctor and pharmicist and know what your side effects are for that medication, as well as other drug interactions.
Our family has taken the following medications over the years: Phenobarbital, Trileptal, Dilantin, Lamictal, Keppra, and Carbatrol. Currently Laycie is taking Carbatrol. Medicine dosage is important. Too much can lead to severe side effect symptoms and too little can result in seizure.
Here are some examples of the side effects of these medications and how they have affected our family:
Phenobarbital can cause over-excitement and hullicinations, as well as rash and itching. I personally suffered all of these as a result of this medication.
Dilantin can result in the same side effects and I also suffered these from the medication.
Trileptal can cause extreme drowsiness, lack of appetite and speech impairment. Laycie suffered all of these side effects while taking this medication for her first two years.
Carbatrol can result in over-excitement, severe hyperactivity or ADHD type symptoms, insomnia, lack of appetite, rash, and itchiness. Laycie has suffered all of these symptoms from this medication also.
For Laycie, the Keppra stopped working after two weeks without warning. The doctors give no reason as to why.
As I stated above these are examples of how these medications’ side effects have effected our family. This does not mean they will effect your family in the same way, and should not be viewed as such. As a patient, parent or loved one of someone with Epilepsy, you should read up on the facts about the medication your family member is taking and pay special attention to the side effects so that you know what is normal and common and what is not. Some of these side effects can be dealt with in other ways but some can have severe and dangerous effects. Our family is lucky that it is not the case for us. Our side effects are mild, thankfully and easy to live with.
A common myth in Epilepsy is the belief that a person can swallow their tongue. Once upon a time, it was advised that a person place a spoon into the mouth of a seizing person to prevent them from swallowing their tongue. In recent years, Doctors have discovered that this is actually one of the worst things you can do for a seizure patient.
FACT: A person CANNOT SWALLOW their TONGUE. The little piece of skin underneath your tongue prevents it from being swallowed.
FACT: Placing a spoon into a seizing persons mouth can be extremely dangerous. It can gag the person. It can become lodged in the persons throat. It can be jabbed into the back of the mouth causing serious damage.
FACT: The tongue can close over the opening in the throat preventing a person from breathing during a seizure.
The best way to prevent a person from having this happen is to roll them onto their side during a seizure. This allows the tongue to fall forward and remain in a normal position preventing blockage to the throat, thereby preventing blockage of air during seizure. It is also best to try to help a seizing person onto the ground away from sharp or hard objects to prevent further injury during a seizure episode.
To learn more about seizures, and to become Seizure Smart please visit https://www.getseizuresmart.org/ today!!
Did you know there once was a time when Epilepsy was considered to be demonic? During this time, people assumed that having seizures equaled being possessed by Satan or one of his many demons. Churches tormented seizure patients by torturing them and putting through exorcisms to release this so-called demon possession that never even existed. Almost 100 years ago, seizure patients were locked in insane asylums to be dealt with because so little was known about Epilepsy as a disorder. Parent’s whose children had this disorder did not bother to deal with it but instead locked their child away at the doctor’s insistance.
Today the outlook on Epilepsy has changed a lot. People now know that Epilepsy is simply a neurological disorder which results in seizures. Still, this demonic possession theory has been passed down by many and it’s our job as patients and parents to make sure the world knows that Epilepsy is not a curse from Satan but instead a disorder that can be treated with medication, among other things. Children and Adults who suffer from this disorder do not need to be institutionalized as past generations believed but instead they need the support and love of family and friends to get them through. They do not need people gawking at them in time of distress but instead need a helping hand and the caring assistance of others.
To learn more about what to do to help someone who is having a seizure, please visit https://www.getseizuresmart.org/ and get seizure smart today!