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Tuesday, November 29, 2022

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Our Journey with Meghan!

Dear Tampabay Parenting,
I’ll never forget my daughter’s first seizure… Meghan was about a month of age, she was laying on my chest when her left arm started to jerk. I tried to hold it still but it continued to making these rythmic jerks and started to raise up as though she were shaking her fist at me. This happened for maybe a minute and then she went limp. It was a really scary moment, I held her out infront of me, I honestly thought she was gone and began to panic. I didn’t realize at the time she had just had her first seizure and was in a postictal state (an altered state of consciousness that a person enters after experiencing an epileptic seizure).

At first it was really frustrating because no one believed me something was wrong, they would tell me babies twitch and I was just a nervous new mom. I knew something wasn’t right, it’s a motherly instinct, you just know.

Meghan continued to have little episodes of fist shaking and sometimes it would include both arms and legs jerking, but it seemed to only happen when I was alone with her. feeling so frustrated that no one else had seen one, I started to carry a video camera around with me, I was determined to catch an episode on tape to show everyone what I was seeing was not just a baby twitch, although inside I wanted to believe they were right. My husband was present for the next episode my daughter had and I caught all seven and a half minutes on tape. This was the moment our lives changed and our journey with epilepsy began.

After I caught the seizure on tape we found a great neurologist, Dr. Parrish Winesett, who sent us to All Children’s Hospital where they did a series of EEG’s and a Cat Scan. We found out Meghan had a mix of fluid and blood on the brain, Dr. Winesett thought that this may be the cause of Meghan’s seizures and he reffered us to Dr. Tuite, a pediatric neurosurgeon who sent us back to All Children’s for an MRI to get a better look. That was the first time we heard the word “Subdural Tap” our world felt as though it was collapsing I couldn’t fathom the thought that they might have to cut into my three month old daughters head. Luckily Dr. Tuite was a thinker, he felt that the fluid would clear up on it’s own, that there would be no need to do anything invasive.

We went back for a follow up MRI with Dr. Tuite,he told us that the fluid had indeed had cleared up on it’s own. Dr. Tuite said that Meghan also had a mild case of Plagiocephaly, “a misshapen (asymmetrical) shape of the head from repeated pressure to the same area of the head. Plagiocephaly literally means “oblique head” (from the Greek words “plagio” for oblique and “cephale” for head”). At first the word startled me but Dr. Tuite told us that it was so mild it should correct itself by the time Meghan was five and again he was right.

Somewhere in the midst of all this, it was time for Meghan’s immunizations. It may sound silly, but it was really hard for me, I read up on all the shots and was sooo nervous. I had read that you shouldn’t give a child with seizures pertusis and was set on telling our pediatrician at the time she would not be having that shot. Between the doctor and my family I was talked into giving her the full DTaP which contains pertusis.

Remember I talked about that gut feeling, that motherly instinct, I wish I had been stronger and listened to mine that day because Meghan went from one or two seizures every couple of weeks to eight to twenty a day. Meghan was bayflighted for status seizures and we spent a lot of time back and forth to All Children’s back then, it was an incredibly scary time.

Thankfully, by the age of three her seizures started to taper off and became more infrequent. Her last seizure (until recently) was in Kindergarten, we had period of three years where she had none! It was great and we began to feel hope as we weaned her off of the phenobarbital and down to almost nothing on the Keppra. We even had a “she may be growing out of it” conversation at the doctors office.

Sadly this past summer, just a few months after that conversation brought us hope, her seizures came back. They started with small swallowing episodes and then generalized into bigger, longer seizures. We found ourselves back at All Children’s again a few times trying to find the right medicine to keep her seizures controlled. We also discovered her seizures are now not coming from the left as we’d originally thought but instead from the right. The surgery word has been dropped a few times and it scares the hell out of us.

Meg has been amazing through all the blood draws, medicine changes, extra homework and hospital trips, she always has a smile and I love that about her. She’s the bravest girl with the biggest heart and no matter what our next hurdle we will continue to advocate, raise awareness and work through it as a family.

Epilepsy is a disorder that results from a misfire of electrical signals inside the brain, which can result in a seizure. When people think of seizures, they often think of convulsions in which a person may drop to the ground and shake uncontrollably, but what a lot of people don’t know is that not all seizures are drop seizures. There are many types of seizures and some have mild symptoms. Focal seizures, also called partial seizures, happen in just one part of the brain. An example of a focal seizure might be repetitive swallowing, a blank stare, or in Meg’s case when she was a baby it was a fist shake. Generalized seizures are a result of abnormal activity on both sides of the brain and are more prone to the drop seizures many people are familiar with.

Meghan had been well controlled on medication for three years until she started having seizures again this past summer. We spent a lot of time back and forth to All Children’s Hospital trying to find out why this was happening. As I mentioned found out her seizures were now coming from a different part of her brain than originally thought. We scheduled an MRI to rule out a type of tumor that is sometimes present with the EEG readings they were recieving and thank god that came back clear, no tumors! However, Meg was still having seizures so we began the journey of trying new medicines and getting the levels up to keep her seizures under control. Meghan has an amazing Epileptologist Dr. Parrish Winesett who works closely with us to keep Meg’s seizures under control and we are thankful for that.

We keep everything normal around here and try to get out as a family as much as we can, because we will not let epilepsy stop Meghan from being a kid and/or doing the normal things kids her age are supposed to be doing! Meg has played t-ball and soccer, but decided instead decided she’d like to learn the piano and join a Drama Club at her school! We constantly tell her there’s nothing she can’t do, she just has to do things smart. There are a lot of stigma’s associated with epilepsy and we work very hard with organizations like to help dispel the myths. You can read more about our story on my blog (on the right if you scroll down you can click on categories and find epilepsy). We also blog at Family is important to us and we’ve been blessed with an amazing support system consisting of family and friends. We would love the opportunity to spend time at either Busch Gardens or Sea World making memories and we would love to blog about our experiences!

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