I wasn’t going to post today, but we have slight improvements that I wanted to share. I mentioned this morning that we hadn’t quite knocked out the seizure activity with the Phenobarbital. The second drug of choice (in addition to, not instead of) is Keppra.
J and I understood the details slightly differently, but our combined understanding is that N hasn’t had a seizure since they started Keppra, and L’s have finally slowed down significantly. We believe he has only had one seizure this afternoon. Now…that was all after a loading dose, so they haven’t settled in to maintenance doses yet. That means there may still be some work to do to settle on a maintenance dosage. But at least we’re seeing that the combined medicines are helping.
We met with the weekend neurology team and asked some questions, few of which could be answered. We are hoping that a non seizing brain is more productive than a seizing brain. But no one can be sure what these brains are capable of. We asked if the seizures were focused in one particular area, and the answer was no…they were happening all over their brain. That isn’t surprising since their particular area of concern is the entire outer layer of brain. We are concerned about the sedating effect that seizure medication can have. They said that generally the patients become accustomed to the dosage, and that drowsiness wears off. Hopefully that will be true for our boys.
Nonetheless, it feels better to know that we might be close to getting these boys seizure free. Other than the obvious reason of wanting the seizures to stop, that also gets us closer to getting them off of the EEG equipment and in to our arms.
In other uplifting news, I was surprised with some visitors this morning. I knew my brother was coming up, but he brought a crew with him! Aunt Pam, Uncle Lanny, Eric and a Pay Day Bar were also on board!
Since we can’t handle the boys a lot right now, and since K was in for a visit, it gave us an excuse to just…play!
K was such a big boy. We are so proud of how he has been handling the shuffling the last two weeks. We are so thankful for the friends and grandparents who are helping us with him. He is adjusting well, staying happy, and brought us so much joy this weekend. A fine big brother indeed.
Pamela Surber said:
It was so good to see you and to meet 2 sweet angels…..As for the Pay Day Bar,………..It DIDN’T make it home.
Kaity woods said:
We are praying for your little guys and entire family. They are just the cutest little ones. May God BLESS them and you all.
Beverlee Dowdy said:
Just riding along with you. Blessings to you each day…… ❤
Sheila Blevins said:
Continued prayers as you ride this roller coaster. Praying the highs are more frequent and longer lasting than the lows. I’m sure Karson was such a treat for you and Justin. Prayers for continued blessings.