It’s been roughly one week since we got Abigail’s MRI results back. We now have some more concrete answers about her epilepsy, it’s likely cause, and what treatment options we can now explore! Read on to get the latest update on Abigail’s seizures situation!
As some of you may know, Abigail was diagnosed with infantile spasms around 9-10 months of age. We managed to get them pretty well under control for awhile but a few months ago she began having new epileptic episodes again. This prompted a new round of tests for her, which leads us to a recent brain MRI scan she underwent at the Children’s Hospital.
To read more backstory on Abigail’s journey start here!
I knew when the neurologist left a voicemail saying “I don’t want to leave this in a voicemail so I will send you a message through (our healthcare app)” that something had been found on the scan. Instant nerves! We had been praying the doctors would find answers and guidance for helping Abigail control her seizures. We prayed and hoped that putting her through sedation and an MRI scan would be worthwhile if it meant it brought us some clarity and direction!
But we also wanted the MRI to come up clean- to not reveal something in her precious little head that is causing these episodes.
The Results & New Diagnosis
As it would turn out the MRI revealed what is called Focal Cortical Dysplasia. Essentially, this means there is a section of her brain which developed abnormally in utero. This is very likely to be the cause of her infantile spasms and all seizures thereafter.
Focal Cortical Dysplasia can be genetic so as Abigails’ parents, Bobby and I will be trying to participate in a genetics test with her to learn more about where the condition may have come from. Naturally, as her mother, I wanted to know if I had done something while pregnant with her which may have caused this abnormal formation to occur- as far as I can tell there is no clear evidence that I could have influenced the outcome for her.
One specific trait of Focal Cortical Dysplasia that stuck out to me was that the seizures are often drug-resistant. This explained why her episodes were controlled for a period but then increasing her medication dose did not seem to help regain control. As frustrating as this is, it is good to have explanations and insight into some of these things my sweet girl is experiencing.
Some Interesting Revelations:
The very small area of abnormal formation in her brain was found to be on the left side of Abigail’s brain. The spot is locates close to her sensory and motor skills parts of the brain and so we have some new perspective on some of her development.
One of the most interesting is that from an early age we have claimed Abigail is left-handed or left hand dominant. She always seemed to have better control and dexterity with her left hand! Now, since the left side of the brain actually controls the right side of the body, we have reason to believe that this obvious hand dominance may be a result of the location of her FCD. How interesting is that!?!
Among other things this diagnosis explains where her infantile spasms comes from, why her medication is not controlling her seizures, and even why she doesn’t seem to have a clear trigger for her episodes.
What do we do now?
Now that we have a name for her epilepsy condition we can look towards treatment possibilities. Ideally, we will be able to find a medication combination that provides Abigail control over her seizures. There is also some potential that a modified diet could help!
Some more intense options to consider if medication and diet changes are not enough might include implanting devices to disrupt the abnormal brain activity or even epilepsy surgery.
Looking Ahead for Abigail
The reality is though, my precious little Abby-girl may never be seizure-free. And that hurts my heart to think about because I know she dislikes experiencing them. I wish so badly that I could wave a magic wand and bippidee-boppidee-boo them away.
My mind wonders for her future, especially now with my small understanding of this new diagnosis. Will she be able to safely drive? Will flashing lights be a trigger for her which would force her to avoid emergency lights, movie theaters, & even school class videos? Will this affect what jobs she can perform? Will her speech always be delayed? What can I do? How can I best help her? Is it dangerous for her to swim or live alone? Can my baby grow up to live a normal life?
Honestly, I don’t know. I don’t have any of those answers. I can only fight everyday for the best possible outcomes for her and strive to support her so she can overcome any barriers FCD will bring her as she pursues her dreams.
How Can You Help?
First, a gentle word from a frustrated parent. It’s NOT helpful to treat Abigail like she is different from any other child. Bumping her head under a table or falling over are not going to affect her any more or less than any other child. Some well-meaning people have made comments like ‘well I’m sure hitting her head isn’t helping’ or ‘you should put a helmet on her or something’. To be clear: my child did NOTHING to hurt herself or put herself at increased risk of brain damage. This isn’t a sports injury or trauma result which could worsen with a new injury. She was born this way.
It’s also not overly helpful to talk about your friends-brothers-coworker who has seizures. Epilepsy and seizures are very broad terms and encompass a lot of different kinds of conditions. Each case is unique and unless it is a similar Focal Cortical Dysplasia case, it is probably not going to be relatable to Abigail’s experiences. While I love hearing success stories about people who have overcome epilepsy and seizure complications, it might just highlight the resistant nature of Abigail’s episodes and can potentially be more discouraging than supportive.
What would be tremendously helpful would be celebrating the happy, silly girl Abigail is and the fact that she continues fighting her way forward despite her FCD. Join me in praying over my beautiful Abigail. She is such an adorable little goofball who deserves a life where FCD has no control over her.
Tell Me More
Have you ever heard of Focal Cortical Dysplasia or infantile spasms? Do you have any recommendations or information on the ketogenic diet you would be willing to share?
Will absolutely keep little Abigail in my prayers. God is already using this to bless others…just by your posts. It offers help and support to other in your position. I can’t wait to see how He is going to use little Abigail as she walks this path. God made her just for this. He has a plan and will reveal it in His own perfect time.
God bless you and your little family.
We keep the same cycle going.
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