March 18, 2013

another EEG

Last week Olivia had her fourth EEG since birth.  It was a bit of a last minute thing because Olivia began showing signs of seizure activity a few weeks ago and despite an increase with her current seizure medication, we began seeing seizures more frequently and for longer periods of time throughout the day so the neurologist wanted another EEG to better assess what is going on in Olivia's brain as she is growing.

Fortunately, we were able to do the EEG locally and we got to have the same tech as last time so it was a familiar thing for all of us.  Most of Olivia's seizures occur when she is waking up so the tech wanted her good and asleep so we could wake her up and watch what happens.  This girl was snoozin!

And was not too happy with us when we woke her up....
She had one of her seizures during the EEG so the tech got a really good picture of what happens, both in her brain and physically. 
 
We were told they would send the EEG to be read in Little Rock and then we would hear back from our neurologist locally by Thursday.  Well, I got a call Wednesday late afternoon from the nurse that the neurologist needed to see us Thursday morning because Olivia's EEG was definitely showing signs of seizures.  Even though the EEG confirmed what we had been seeing at home for a few weeks, hearing that we needed to see the doctor as soon as possible sent Jason and I into a bit of a tizzy Wednesday night.  Fortunately, we had small group that night to distract us a little and also to be prayed for by our amazing friends.
 
                                      
So Thursday we went to see the neurologist and Olivia wasn't too excited about being back at the doctor. Ha! 
 
We kinda went in with our minds set on the worst case scenario so what we were told wasn't too horrible.  Olivia is having infantile spasms, which is basically a form of epilepsy.  Of course we have known since Olivia's birth that she would be at risk for seizures but we were just praying that with medication, seizures would never happen.  However, our neurologist told us that the type of seizures Olivia is having is very common for babies who go without oxygen for a period of time during birth.  And it is definitely common for these types of seizures to manifest 4-10 months after birth so with Olivia being 6 months old, the neurologist said she wasn't surprised this was happening.  We have started a new type of seizure medication that will hopefully "cure" these infantile spasms and we prayerfully will never see them again.  The risk of the new medication is peripheral blindness so we are praying hard that that doesn't happen to Olivia.  And after only three days of this medication, we are already seeing a reduction in Olivia's seizure activity so we have full confidence that this medicine will take care of these seizures and hopefully Olivia won't be on these medication for more than a few months, which will also reduce her risk of peripheral blindness.
 
Even in the midst of all the unknowns about Olivia's future, we know that God is good and His plan is so much greater than ours...and that is the truth that we have to cling to to make it through each doctor appointment with Olivia because it is so difficult as parents to know there is nothing we can do to "fix" Olivia....it is simply our job to love her and trust God with her life.

9 comments:

  1. My daughter starting having these shakes when she was 5 months old. Her arms would raise and tense up and her mouth would open and she would shake for a couple seconds. We went to AR Childrens at 13 months for an EEG but since she didn't have one of the "shakes" during the test nothing was ever done. Do you mind sharing what one of Olivia's seizures look like? My Ped just thought it was behavorial and only sent us to Childrens at my request.

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    1. Hi! Olivia's seizures involve stiffening of her limbs, hard turning of her head to the right side and twitching/rolling of her eyes. I hope this helps you figure out what is going on with your sweet baby! If you have any other questions, feel free to email me.

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  2. I'm so glad y'all were able to get some news and are able to try a new medication! The neurologist told us that Addi could have peripheral blindness as well, but she never experienced this. We still get her eyes checked once a year since most of her swelling on her brain was on her occipital lobe, just in case. We are still praying for y'all!

    Mary Beth

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    1. Thank you so much Mary Beth! it is encouraging to hear that your sweet baby is ok and didn't suffer from any blindness. That is our biggest fear right now but the risk of that far outweighs the benefit of stopping the seizures. Thank you again for praying for us and offering such great encouragement during this time!

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  3. Praying for you sweet friend. We know all too well about "unknowns" and even though the cases are different I can relate to alot of the feelings you are dealing with. Ya'll are amazing and of course have amazing attitudes! Love ya'll!

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    1. Thank you Katie! We love y'all so much and continue to pray for you and sweet Sawyer as you also navigate the medical unknowns. Love you friend!

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  4. Just curious, what medicine is she on? My daughter is a 22 month cardiac who had a stroke during her open heart. Within the last month she had a focal seizure (her first) and has been on Keppra since. Her EEG shows tendenicies but she hasn't had any since. I would like to have another EEG done sooner but they want her to be 18 months seizure free. I found your blog a while ago through a blog through a blog. I feel like maybe I was supposed to find you to have someone in a similar journey to learn from. Thank you!

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    1. Hi! Olivia is also on Keppra, and has been since she was about a month old. The new medicine she was just started in is called Sabril and it is definitely helping with reducing her seizure activity. I'm so glad you found our blog! Feel free to email and ask any questions you may have! It is nice to have other moms understand what we go through with our babies

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