Saturday, May 24, 2014

A Diagnosis: Epilepsy

This post has been a long time coming. I've hesitated to write, probably mostly out of denial. I just wanted to share our experience in hopes that it may help, enlighten, and unburden me and others. At the beginning of the year we experience our first seizure with Lil. You can read more bout it here. What was diagnosed as a febrile seizure (even though she didn't have a fever) I was able to cope and hope that that was our first and last experience with them. 

Unfortunately...that hasn't been the case.

Almost 4 months later she had another one with my husband. He didn't experience the first one, so it was quite a shocker. After seeing our doctor, we were sent to a specialist. He ordered an EEG and an MRI. Two weeks later, she had another. We saw the specialist and he put her on medicine (a generic of Keppra) and diagnosed with Epilepsy. This diagnosis, though scary, is a broad one. Any child who has experience more than 1 seizure has epilepsy. Somehow I find comfort in this.  

Her EEG was that following week and luckily it turned out normal. All praises to GOD!!

And then another one this morning.

Although it is frustrating and at some points completely overwhelming. I have to keep perspective in place. Our sweet girl is healthy, vibrant, and such a love. It is easy to get caught up in the "diagnosis" of it all and become boggled down by the appointments and such. I'm so grateful for her health. We continue to pray over her and trust in God's protection and love. Its so easy for me to forget to be thankful for health. It's those simple things I'm reminded of that makes me remember how lucky I am. Though this diagnosis now places a label on our family, I vow to not let it weigh us down. 

My sweet little one is more than I could have asked for. Her love and temperament is sweeter than honey and her laugh is more joyous than Christmas Day. It is in these things I know that she will overcome. And that brings me much comfort.

I also just want to share a bit of information that can be helpful if this ever happens:
1. A visit to the ER is under your discretion. I believe that our two trips were very important for our well being and kept me more at ease knowing she was getting looked at. The following two seizures we did not take her to the ER because her recovery was normal.

2. It is common for children to experience "staring spells." The child with be awake but limp, possibly foaming at the mouth. MONITOR THEIR BREATHING!! We typically take Lil to a comfortable position, talk and encourage her in a soothing voice and check her breathing. It can sometimes take a few minutes for them to come back. During this time they may be listless, have a labored breath, not blink.

3. After a seizure, it is very common for them to fall asleep. This is encouraged. We find that when she went to the ER she was much more fussy because she was being poked and prodded. 

4. Seizures are common and mostly go undiagnosed. 

5. Track your child's seizures and what was going on. I will be doing this soon. It is a great record in the event it is needed.

Thank you for reading and please share with anyone who may have experienced this. I would love to chat :)

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