Last night (Sunday, Feb. 3) Oliver started having seizures again. He's been on a maintenance seizure med for about three weeks and had not had a seizure for over a week and a half, but starting last night around 7pm he's had over 27. Most have been moderate but one of the last ones dropped his oxygen saturation to 43%.
We called the on-call doctor when the seizures started last night but unfortunately it must have been a newer doctor at our pediatric group and he was not familiar with Oliver and not comfortable giving us counsel about how to change his medication. Of our three choices (the on-call doctor said to go to the ER for tests, or we could do nothing and just watch him have seizures all night, or we could increase the dosage of his seizure medication on our own), we choose to increase his medication on our own. Our own pediatrician had just made a house call earlier Sunday afternoon and had said several times that we were on the low end of the dosing range for Oliver's weight, so we gave him a slightly increased dose from what we had been giving him, in keeping with the incremental increases that the doctors had ordered in the past. The seizures seemed to ease up slightly, but still continued throughout the night.
We called and talked with a different doctor this morning and he agreed that what we chose to do was fine, and he even increased the dosage again since the seizures had not stopped. The seizures have persisted so the doctor just instructed us to use the "rescue" seizure med to break this series or cluster of episodes. Essentially it is a fast acting valium, which will probably wipe him out in a deep sleep for a while. We pray and hope that the seizures will stop to let his little body rest.
*** Update: the first dose of the valium helped but did not completely stop the seizures so we just gave him an additional dose as per the doctor's instructions. Hopefully this larger total dose will help him.
***Another Update: Tuesday morning - we gave Oliver the Valium again at 1am, but each time it wears off his seizures come back with a vengeance, as frequent as every 10 minutes. Please continue to pray for Oliver and for us and his doctors as we try to figure out how to help him today.
***Finally: Tuesday afternoon his seizures became gradually less intense and finally seem to have subsided. Hopefully the current dose of his medicine will keep them under control and let him (and us!) rest. Thank you all so much for your prayers over the last few days!
We called the on-call doctor when the seizures started last night but unfortunately it must have been a newer doctor at our pediatric group and he was not familiar with Oliver and not comfortable giving us counsel about how to change his medication. Of our three choices (the on-call doctor said to go to the ER for tests, or we could do nothing and just watch him have seizures all night, or we could increase the dosage of his seizure medication on our own), we choose to increase his medication on our own. Our own pediatrician had just made a house call earlier Sunday afternoon and had said several times that we were on the low end of the dosing range for Oliver's weight, so we gave him a slightly increased dose from what we had been giving him, in keeping with the incremental increases that the doctors had ordered in the past. The seizures seemed to ease up slightly, but still continued throughout the night.
We called and talked with a different doctor this morning and he agreed that what we chose to do was fine, and he even increased the dosage again since the seizures had not stopped. The seizures have persisted so the doctor just instructed us to use the "rescue" seizure med to break this series or cluster of episodes. Essentially it is a fast acting valium, which will probably wipe him out in a deep sleep for a while. We pray and hope that the seizures will stop to let his little body rest.
*** Update: the first dose of the valium helped but did not completely stop the seizures so we just gave him an additional dose as per the doctor's instructions. Hopefully this larger total dose will help him.
***Another Update: Tuesday morning - we gave Oliver the Valium again at 1am, but each time it wears off his seizures come back with a vengeance, as frequent as every 10 minutes. Please continue to pray for Oliver and for us and his doctors as we try to figure out how to help him today.
***Finally: Tuesday afternoon his seizures became gradually less intense and finally seem to have subsided. Hopefully the current dose of his medicine will keep them under control and let him (and us!) rest. Thank you all so much for your prayers over the last few days!
Here's one of my favorite essays on praying for healing, by theologian Margaret Kim Peterson. I can't remember if I've already shared it.
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