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Heidi’s Story: Mom recalls experience with Benign Rolandic Epilepsy

Strawser Family-LWWEHeidi submitted her family’s personal experience with Benign Rolandic Epilepsy to Living Well With Epilepsy.

Our Experience

Ashley was a child who went through every possible bad sleeping habit known to man. The year that she was in 3rd grade was particularly awful. So, in order to get some sleep, I would often let her sleep in bed with me on the weekends. Brian was often at the races on Saturday nights and didn’t get home ’til late anyway.

On one such Saturday night, I thought Ashley was having a bad dream. I went around to her side of the bed and tried to wake her, but she didn’t respond. I tried sitting and standing her up. I yelled for Brian to come help me. By the time he got upstairs, Ashley’s eyes were rolled up in her head and she was shaking uncontrollably all over. I know now that she was having a grand mal seizure.

We spent the next day in the emergency room. They did a CAT scan and an MRI. The results of both came back normal. We were sent on our way.

The seizures continued – always after Ashley was in bed for the night. We visited our pediatrician who referred us to a pediatric neurologist. I was less than thrilled with this doctor who performed various motor tests on Ashley and then, right in front of Ashley, told me that she would “always be slow” – that she’s probably always going to struggle with school work, etc. After an EEG, she diagnosed Ashley with Benign Rolandic Epilepsy(BRE).

I had been keeping track and I could pinpoint every time that Ashley had a seizure to a day that she had ingested Aspartame in some form during the day (even something as small as a stick of gum). I asked the doctor if there could be a connection, but she was adamant that there couldn’t be. She said the seizures should go away once Ashley had “completed puberty” and, unless she started having day-time seizures, there was no need for medication.

The Aftermath

Once we got home for the diagnosis appointment, I started doing my research on BRE online. (I really don’t recommend this in many instances because it tends to make you worried and panicked, but I’m a researcher and I wanted more information than the doctor gave me.) I realized that while Ashley was experiencing grand mal seizures, that she had actually been experiencing mini-seizures for some time before this.

Witnessing the seizures was just awful. Afterwards, she would be able to tell us that she could feel them coming on, but was already non-verbal and wasn’t able to yell to get our attention. I would always hear her and rush to her bedside and just sit with her through them. Sometimes being a parent can be a very helpless feeling.

Ashley experienced a few more seizures after that time. But, fortunately for us, she did outgrow the condition once she hit puberty. She has been seizure-free for about 8-9 years now.

How We’re Dealing with It

To this day, Ashley reads the nutrition labels on EVERYTHING. Did you know that most gums – even the ones that aren’t sugar-free – contain Aspartame? We steer away from all diet drinks around here. Up until recently, we didn’t keep any artificial sweeteners on hand. (We’ve since realized that she’s fine with both Sweet ‘n Low and Splenda.) (We often wonder if Aspartame would still cause her to seize, but we’re too scared to test it out.)

We’re glad that we can now look back on Benign Rolandic Epilepsy as a memory, as something we experienced for a time, but we’re past it. If fact, when I told Ashley what experience I planned to write about this week, she said , “Oh, I kinda forgot I even had that!” I’m glad it’s a distant memory for her! When I hear of other children who experience seizures, it all comes flooding back, and I can understand how those parents must be feeling – the fears, the questions, etc.

I’m happy to report that the pediatric neurologist was WRONG . . . Ashley has never been slow in any way. She’s never had any learning issues in school. In fact, she continues to excel in many ways. She has definitely proved that doctor wrong.

If you have a child who experiences seizures for an unknown reason, you may want to research BRE a bit. The good news is that it is outgrown!

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7 Responses

  1. tia
    | Reply

    THANK YOU SO MUCH..Im so afraid. .my daughter had a seizure & was diagnosed with BRE last week..a day before her 9th birthday..Im terrified..You’re story has helped me more than you’ll ever know..I thank God for you.

  2. Lei
    | Reply

    Hi! I’m so happy for you especially to your daughter. My daughter was just diagnosed of BRE last July and just like you before I feel helpless everytime she’s having a seizure. I’m prayed to God every night to be with her by her side .
    I just want to ask if you gave meds to your daughter and why.
    Thank you so much !

  3. Nancy
    | Reply

    Was your daughter ever put on medication? My son was put on trileptal or oxcarbazepine. Makes me nervous wondering the longtime side effects. I would love any input. Thanks

  4. Steve
    | Reply

    Thank God for people like you for taking the time and energy to share your information. We suspect that our son has BRE. The doctor always asks us to keep in mind what is different about the days prior to the night when he has a seizure. Sure enough shortly before going to bed last night he had some bubble gum containing aspartame. This morning he had a seizure. The seizures are infrequent, and he has had the same type of gum without any problems. But just the possibility has me concerned. When in doubt, leave it out. He will enjoy other treats besides gum from now on just to err on the side of safety.

  5. Jodi
    | Reply

    My son was diagosed with BRE at age 10 after we witnessed a generalized (grand mal) seizure shortly after he fell asleep in a hotel room on vacation. Our pediatrician thought we should just “watch things” and not go through testing. I asked for an EEG and between that visit and the test I noticed that he had a facial droop and impaired speech during the day. When I asked what was wrong, his response, “my tongue is numb, it will go away it a little while”. We went to a Pediatric Neurologist and he was diagnosed with BRE after his EEG findings and a negative MRI. He could remember the partial seizure (the tongue and face stuff) as far back as age 8 and didn’t tell us because he thought it was normal:( He went on Keppra and has been almost 2 years seizure free. Yesterday, we had a repeat EEG and it was normal. Our neurologist correlated it to his age (12) and sexual maturation (it is starting). We will wean off of the keppra in a few months and see how it goes.
    Our story isn’t unlike many others, but after living with the constant feeling in my maternal gut that he was going to seize at any minute, there now is light at the end of the tunnel. My son’s biggest trigger was sleep deprivation. He was never a good sleeper, and we can’t help but wonder what role the BRE played in that. Hang in there and know your child. While I wasn’t thrilled about him starting a medication, I will say that it worked and he did not experience side effects on Keppra. He started on Trileptal and developed an awful rash. My husband and I noticed right away that he seemed to be sleeping better once on medicationsThis is anecdotal, but a welcome observation none-the-less after years of him being sleep deprived.
    There is good support out there – thank goodness for online resources like this!!

  6. Melissa
    | Reply

    My son had his first seizure at 6, his finger went numb and a couple seconds later he was on the floor, he said he was conscious and could see and hear everything (all the panic )
    His second seizure was in his bed around an hour and a half after waking up, this seizure was much worse, lasting 9 minutes, he lost sight in one eye for a while afterwards .. a few months later he had an eeg and was diagnosed as bre (I questioned it as he never has the tingling drooling of the face it’s ALWAYS his finger goes numb and it either travels up his arm and goes into a full seizure or it stops) but they insist it’s bre. It terrified me I was a mess. His next seizure was again around an hour and a half after waking up and this time I witnessed the entire thing from start to finish, a full tonic clonic seizure lasting 8 minutes, the scariest 8 minutes of my life. I will never ever forget the pain and pure heartache I felt seeing him like that. He is now 8 and 1 year seizure free, he is medicated because of how frequent the prolonged they were becoming. I really do hope he grows out of this, it’s so sad to see him suffer and to see the fear on his face knowing he’s about to lose control of his body. Breaks me heart.

    I feel for every other child and parent going through this. I will say the anxiety in the last year for me has significantly subsided and my son feels a lot better about his diagnosis.

    I did want to ask, if anyone does come across this would you say my son’s experience with his seizures are typical of bre? The tingly/numb finger that travels up his arm and eventually either one whole side of his body or a full tonic clonic effecting his whole body? He’s never had the tingly tongue or drooling etc.

    Thankyou for taking the time to read.

    • Jessica K. Smith
      | Reply

      Melissa, As I’m sure you know I am not a physician but I would like to put this (anonymously) in front of a neurologist friend. I am thrilled he is a year seizure free and I am hopeful that he does grow out of it. But to ease your mind I am happy to reach out to see if we can get you some answers. I will email you separately.

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