On Thursday, we met with Dr. Tran and her team to discuss what she's observed so far, and her recommended plan. Turns out, Jenelle has constant "electric neurological interference" (my term, and Dr. Tran agreed it was a great description for what is going on in her brain.) What is that you ask? Well, maybe photos will help...
The photo below is of the EEG wave patterns we observed all day, every day when Jenelle was hooked up to the EEG. We've always seen this type of "chaotic" pattern when Jenelle has had an EEG, and just assumed it was indicating her movements, etc. We learned that this chaotic pattern is not because of movement, but it is actually electronic transmissions misfiring and disrupting constant brain wave thoughts. The chaotic waves inside the red boxes I applied to the photo below are not what a normal EEG should look like.
The lines in the green box below is what a "normal" EEG should look like. Small, calm squiggly lines on every lead going across the page. If the EEG were hooked up to you or me, it would have pages and pages of clean, small, calm lines. Jenelle's EEG for the last 5 days had pages and pages of chaotic lines like the photo in the red box. Constant electronic neurologic interference typical for a child with a diagnosis of Lennox Gastaut. Imagine trying to function when your brain is constantly interrupted like that - frankly I'm amazed at how well she adapts and functions given what her EEG looks like all the time.
So, although we didn't catch a big seizure like a grand mal (tonic clonic) or tonic seizure, we have a better idea of what Jenelle's brain is doing. Dr. Tran has decided to make some big changes in Jenelle's medications to see if we can "clean up" the EEG to get it to look more calm like the lines in the green box above. We have discontinued Vimpat, and we are returning to a drug Jenelle had been on for almost 6 years - Felbamate. We are also going to decrease the Onfi during the day as it makes her more drowsy.
Since stopping the Vimpat on Wednesday, Jenelle does seem more alert! Even Nurse Sue at UCLA felt Jenelle was too drugged when we considered the VNS a year ago; so its nice to see her more awake off the Vimpat. Brett says to be careful what you wish for... Unfortunately, Jenelle has been waking in the middle of the night, every single night since staying here. Brett and I have been wondering if she has had a habit of waking at night, or if this is a fluke because of the hospital environment? I think I may look into getting a video baby monitor so we can keep a better eye on her. Insomnia is something that can happen with Felbamate, and sleep deprivation can increase seizures, so looks like we may have some restless nights ahead.
Another thing we learned is that the seizures we thought were Absence seizures are not true Absence seizures. Sometimes, Jenelle "checks out" as she waits for some of the electronic interference to clear up... her outward appearance when that happens looks like an Absence seizure, but isn't. Tricky isn't it? The fluke grand mals, tonic seizures are just that... random break through seizures that should be treated separately, and with Diastat if they go over 5 minutes. If the atypical Absence seizures begin to interfere with Jenelle's function (i.e. excessive drooling, inability to walk, sit up, etc.) we should continue to monitor those and treat with Diastat if they go on for over 15 minutes of an hour, which is no different that what we've been doing all along!
We get to go home today after our last dose of Felbamate at 3:00 pm. Dr. Tran will monitor Jenelle's blood counts weekly for the next six weeks. One of the major side effects that can happen in the early stages of beginning Felbamate is aplastic anemia. Even though Jenelle used to take is without this side effect, we will still add it back with caution. Our next follow up with Dr. Tran will be in January. If things improve, we may have another overnight EEG to see if the waves are cleaner!
That is all for now! Lots of wonderful information! Thank you for the prayer - as always, I'll keep you posted!
Since stopping the Vimpat on Wednesday, Jenelle does seem more alert! Even Nurse Sue at UCLA felt Jenelle was too drugged when we considered the VNS a year ago; so its nice to see her more awake off the Vimpat. Brett says to be careful what you wish for... Unfortunately, Jenelle has been waking in the middle of the night, every single night since staying here. Brett and I have been wondering if she has had a habit of waking at night, or if this is a fluke because of the hospital environment? I think I may look into getting a video baby monitor so we can keep a better eye on her. Insomnia is something that can happen with Felbamate, and sleep deprivation can increase seizures, so looks like we may have some restless nights ahead.
Another thing we learned is that the seizures we thought were Absence seizures are not true Absence seizures. Sometimes, Jenelle "checks out" as she waits for some of the electronic interference to clear up... her outward appearance when that happens looks like an Absence seizure, but isn't. Tricky isn't it? The fluke grand mals, tonic seizures are just that... random break through seizures that should be treated separately, and with Diastat if they go over 5 minutes. If the atypical Absence seizures begin to interfere with Jenelle's function (i.e. excessive drooling, inability to walk, sit up, etc.) we should continue to monitor those and treat with Diastat if they go on for over 15 minutes of an hour, which is no different that what we've been doing all along!
We get to go home today after our last dose of Felbamate at 3:00 pm. Dr. Tran will monitor Jenelle's blood counts weekly for the next six weeks. One of the major side effects that can happen in the early stages of beginning Felbamate is aplastic anemia. Even though Jenelle used to take is without this side effect, we will still add it back with caution. Our next follow up with Dr. Tran will be in January. If things improve, we may have another overnight EEG to see if the waves are cleaner!
That is all for now! Lots of wonderful information! Thank you for the prayer - as always, I'll keep you posted!
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