Kayden's Story

Kayden is now an extremely happy almost eight-year-old who loves soccer and gymnastics. She laughs, smiles and brings so much joy to everyone she is around. No one would ever know she has had more than 100 seizures daily for the past five years. This is the story of how LeBonheur is helping Kayden.

When Kayden was about 7 months old, I noticed her slump over really quickly and pop back up. It was as if someone turned a power switch on and off. I thought it was strange and called the Pediatrician's office. The nurse said it sounds like maybe she is tired and just falling asleep. Just keep an eye on her. I was still worried and then when it happened a few more times in the afternoon, I rushed her to the pediatricians office. The doctor was out so the Nurse Practitioner looked at her. Her vitals were all normal and she acted fine. I still didn't feel right about it after we left so my husband and I agreed we would take a video of it if it happens again. Sure enough, that evening after we put her to bed, she woke up and it happened again. 

We went straight to LeBonheur and showed the triage nurse the video we took. They took us back immediately and started running several tests. EKG, EEG, spinal tap, blood work, etc. We were so worried and the first thing they told us was that these were seizures. I always thought a seizure was just the convulsive kind. We now know the several different types of seizures and how they can look so different in each person. After being in the hospital for about 5 days full of tests and medications, they sent us home to start the first medicine of several. Three years later, we have been in the Epilepsy Monitoring Unit at LeBonheur for several days on 6 separate occasions, tried over 12 different medications, blood work every 6-8 weeks to check medication levels and numerous tests (EEG, MEG, MRI, genetic testing, etc).

After the hard work of the doctors at LeBonheur, Kayden has been diagnosed with Generalized Myoclonic Epilepsy. Myoclonic seizures are like twitches or jerks. She also does have atonic seizures at times which are also called drop seizures. We have not been able to find a cause for the seizures. The MRI showed that her brain structure is normal, no lesions or tumors. An amazing test she had in December 2012, was an MEG (magnetoencephalography). There are only 3 of these for pediatrics available in the country. LeBonheur being one of them. It is able to detect within a millimeter of where the seizure activity is located and will show what areas of the brain are being used. Basically, they placed headphones on Kayden to see if the speech area of her brain reacted when she heard speech. It can also see what parts of her brain respond to reflex tests as well. It was very insightful to find out that Kayden has two areas in her frontal lobe that are causing seizure activity. 

On August 2, 2013 Kayden had brain surgery since her seizures were not getting better through medications and were becoming physically dangerous. We would have to hold her hand all day to prevent her from falling and injuring herself during a seizure. The surgery is called a Corpus Callosotomy where the connection to the right and left sides of the brain is cut to prevent the seizures from spreading through out the brain. It was a huge success! Two of the three seizure types have stopped. Her development has skyrocketed since she can finally complete her thoughts and retain information without a seizure constantly interrupting. This all happened immediately.

Her first meal after surgery, Kayden took the fork from the plate and put food right into her mouth. We had been working on that for months prior to surgery and she couldn't do it. She has continued to make amazing progress daily. It's as if she was reborn after the surgery and came out of the cloud. Her recovery has been absolutely amazing. Kayden continues to have several seizures daily but they are mild and not developmentally damaging. She receives weekly physical, developmental, occupational and speech therapy. Physically she is coming along very well. She is walking and almost running these days. She absolutely loves her gymnastics class when she gets to do somersaults, jumping on the trampoline and hanging from the rings. 

Speech and communication is what we are really working on. Kayden hasn't said any words yet but does babble every once in a while which is a known side effect of the medication. During the MEG test she had in December, we were told her speech pathways are excellent and she may have an auditory processing issue. She has done well with following one step directions with physical and verbal cues. We are continually amazed at her strength and determination. Kayden goes to school every weekday and is doing fantastic! She is learning, playing with her peers and following directions. Her tonic seizures stopped in October 2014 and she starting making noises again. We are hoping these may turn to words some day soon as we continue to try different medications in hopes that she will be seizure free one day."

The LeBonheur Neuro Unit is such an amazing part of a wonderful institution, dedicated to the health and well-being of children. They are tremendously supportive medically, but also emotionally. They have the resources to be leaders in children's medicine, but also offer the compassion and support to treat each child as their own. As parents, they help get Jason and I though every day, knowing we are not alone in this struggle with our daughter.

RIBS Fundraising

If you can't make it to the tournament or the 5K this year, you can still make a donation through PayPal!  Click below to donate.

Mailing Address For RIBS & Rylee's Run 5K:
P.O. Box 38241
Germantown, TN  38183

Funds Raised
In 2022:

$22,000
 Funds Raised
To Date:

$273,805
 Donate To
RIBS

via PayPal

Follow us on Twitter, Facebook & Instagram, or email us below.

(Photos from previous editions of the RIBS Tournament & Rylee's Run 5K
are available on our Facebook page.)