Living with Epilepsy

Long ago when we started our adoption process we started that dreaded check list of needs we thought we could handle. As we went down the needs we started getting braver, after all how could we say no to any child?! But only one need really made me stop quick and had me turning circles in my mind. This need was Epilepsy. You see, my vision (the only vision I had in my made for tv mind) was of a person constantly falling to the ground in hours of convulsions and throwing up. Living with someone who would lose chunks of time in their day due to seizures and lived a most uncomfortable life. At the time we had 4 children, ages 9 to 1 1/2, and the thought of being on high alert 24/7, just did not seem possible. But after much prayer we really felt we could handle a child whose Epilepsy was controlled by medicine. So that is what we did. And then we waited.
Fast forward to a year later and we were hopping on a plane to get our two children. Nina and Isaac. Nina had the diagnoses of Epilepsy controlled by medication, or so we thought. After getting Nina home we realized she had Tuberous Sclerosis Complex. A genetic disorder that causes tumors to grow anywhere from her brain and kidneys to places even outside the body. She had more tumors than the doctor could count and that was the cause for all of the seizures.

Fast forward again to a year later and we were on our way to China again to adopt our daughter from China who also suffered from seizures. Hers are caused by mild Cerebral Palsy, a condition marked by impaired muscle coordination (spastic paralysis) and/or other disabilities, typically caused by damage to the brain before or at birth. I will not lie and say that Epilepsy still does not cause me to be on high alert, it does, but we have managed to get our Abbi’s seizures under control and Nina’s for the most part, are not as scary as I once thought all seizures are. I think it is funny the way God designed women. I think we all thought there were needs that we thought would not be a good fit, but our God makes us ROCK solid when it comes to our babies and we always rise to the challenge!

As I said, Abbi’s seizures have been 100% controlled. Once we found just the right meds for her (coming up on two years this summer!!! YAY!) But Nina’s have been much harder to manage and 3 1/2 years later, still cause her issues. We have spent many, many days and nights in the hospital room for EEG’s and brain surgeries, many MANY trials of different medications and diets, and still battle them. But our God has been SO big through it all and grown us in more ways than I could have EVER imagined!

Managing Abbi’s needs look like 4 pills at night and 4 pills in the morning. She also has an annual MRI to keep an eye on her brain. 😉 Nina’s care looks a lot different. We usually end up doing EEG’s twice a year (depending on how heavy her seizures happen to be), an MRI at least once a year, medicine in the morning and evening, and keeping emergency medicine on us 24/7 in case one of her seizures last more than 3 to 5 minutes. We also have to keep an ear out in the middle of the night, as sometimes her seizures will wake her up in the middle of the night and have her running around the house, but this is not a constant worry.
If you or a friend are interested in adopting a child with Epilepsy, it would be important to find a pediatric neurologist who can help guide you what life may look like on the medical side. Please know that even with videos, it is very hard for any doctor to give you too much information on their seizures. There are SO SO many different kinds of seizure that range in a number of different special needs. And many of those seizures can and will affect every child differently. But when you do bring your child home, videos of their seizures are VERY important to get to their neurologist as soon as possible. It is not an easy task at all, but unless your child is seizing constantly, your doctor may not just believe that your child is really having many or any at all, unless they have proof. Seizures will not always show up on an EEG, especially a 24 hours EEG. So your videos can help show how often and how long they are so they can take the next step.

And in my experience, ALWAYS ALWAYS stick to your guns! If you KNOW something does not look right in YOUR child, keep pushing the doctor to do longer EEG’s. I love our neurologist and she has done a great job with Nina, but when we brought Abbi home she did not believe that she was having seizures, even after showing her videos. She thought they were temper tantrums. But after much pushing we caught many on the second day of her EEG that proved how severe they really were.

When considering a child with Epilepsy make sure your insurance covers pediatric specialists, EEG’s, MRIs and long hospital stays as these are things you will most likely have to do at least once a year.
Many doctors do not understand Tuberous Sclerosis Complex so I have to struggle often with having to really explain to them in detail what it entails. But Epilepsy in and of itself it common enough for most doctors to spot it, but be ready for some to not be completely educated in what may be causing the Epilepsy. Like I say, stick to your gut! NO ONE knows your baby like you do!

Epilepsy is a diagnosis we have to face on a day-to-day basis, but it does not define either of our girls! They are sweet, loving and fun children of God, and I honestly could not imagine our family without either of them!
If you have gone through the process or are in the process of adopting a child with Epilepsy, we started a Facebook page of moms who are a wealth of information and can help you navigate these waters!! Please do not hesitate to reach out! And do not have fear of considering Epilepsy. Many children grow up to be very productive adults living full and easy lives! They deserve to know the love your family can offer.








Guest post by Sara Noll. Visit her blog, His Grand Design