Mystery

We are happy to report that the last 2 days Oliver has been free (as far as we know) of Infantile Spasms (IS)! Even if he has one tomorrow his brain was able to "rest" the past 2 days therefore, we are thanking God! We are praying for a record breaking 3 days without them...we'll see! On the flip he has began to have short absence seizures again. These aren't nearly as serious or noticeable as the IS seizures. We aren't happy about them, but they are much less concerning. These are the ones that seem like he is dazing off/glazed over for a few seconds. So our hypothesis is that the Trileptal (which he went off of Tues) was controlling the absence seizures, but probably contributing to or causing the IS. That is our best guess at what is going on...

The new med seems to been causing Oliver great difficulty with sleep. Add in the new big boy bed/climbing out of crib/etc. and you have a big mess! Oliver will fling himself out of the pack-n-play and then walk around crying, this happens multiple times in the night. We go put him back in but, after the 2nd or 3rd time Andrew gets in the big boy bed with Oliver and holds him till he goes to sleep. It feels like having a newborn again! Whew!

The mystery is what is the culprit of this radical sleep change? We aren't sure if it is the new med, new bedroom, seizures waking him up, 2 year molars coming in, or a mix of all of these???? Before we went to TN and changed meds Oliver was still sleeping well, but helping himself out of the crib/pack-n-play when he woke up. That wasn't that big of a deal. We thought once we returned from TN we would teach him to stay in his bed like he stays in time out. Don't laugh out loud...you probably already know that, that didn't work :( Now, he won't sleep well for a nap or at night and we're all exhausted. He is clearly sleepy during the day, but just can't seem to stay asleep.

So, he is keeping us on our toes. We are drafting an email to our doctors tonight to ask if we should switch off this med or keep soldiering through this? We will keep you posted. Please keep praying for Oliver to be seizure free and, if you don't mind, add on some good quality sleep for him! Fatigue often triggers seizures so we'd love a well rested little guy! You are so kind to come on this journey with us and spend your precious time praying for us! We're thankful!