Reflex seizures/ epilepsy anyone?
morgs8384
member
Ds #2 is 9 months old. Two weeks ago he had a low grade fever and started making movements with his arms ( both sort of tremor-ed) and his eyes would roll back. The "episodes" would last for literally 2-3 seconds and were very sporadic, having maybe 3 the first friday. Long story short, I took him to the ER and he was admitted for two nights to run two EEG's and an MRI. The 24 hour EEG showed up being abnormal, while everything else looked fine. They said he has reflex epilepsy and gave us a script for Keppra.
I feel like a crazy person since we have yet to have our first appointment with his neuro dr. In the meantime Ive probably put in 4 phone calls since we've been home to speak with their nurses. His "seizures" ( feels weird calling them that since they last two seconds) have gotten worse. They are still the same short seizures but he has upwards of 15 a day, if not more. I feel like the keppra, which is now up to 2.5 ml twice a day is doing nothing. I was told to keep it at that dosage and wait til we meet his dr in a week. I've called and asked to get an earlier appointment if something opens up, but in the meantime I feel so hopeless for my baby. The keppra has done nothing, but I am supposed to keep him on it for another week, and that seems so odd. I have a million questions that DH and I have written down over the last two weeks.. the stress of all the whys, whats, and who knows are quickly building. Top it all off with us moving in less then two weeks.
I know I have never posted on this board, and I am sorry to through my pity party out there. Just looking for any support from other moms that have been through something similar with seizures/epilepsy.
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Re: Reflex seizures/ epilepsy anyone?
I know it might not be what you want to hear but theyre likely going to make you stick it out for four weeks until they call it a fail. My daughter is doing awesome on keppra now even though the seizures continued in the first few weeks and she want batshit crazy. It took a full month before we saw actual improvement-it literally was one day out of the blue everything got better. Also something that helped was adding a midday dose instead of just upping the morning and evening ones. I would keep a log and if the seizure activity is around lunchtime and/or later in the afternoon see if a midday dose helps.
i hope you find the right medication soon.
KC thanks for your reply! They never told me how long it would take to see results, and upping it from 1ml to 2.5 in less then two weeks made me feel like results should be seen quickly. So it generally takes a month?
from what my neuros office told me that it was generally quick acting but every kid takes to it a little differently. They always want to give meds a solid month to get in their system before they consider it a success/fail. I was really annoyed they made me stick it out but it really was worth it.
Epilepsy can be a lot of trial and error. First there's finding the right med or combo of meds. Then there's finding the exact correct dose of med/s and this will change as your lo gets older. Keppra might not be the right drug for your child, or they may need keppra alongside another drug for effective seizure control. I can completely empathize with the process completely sucking of waiting while your child continues to seize but your experience isn't atypical of a newly diagnosed child.
Give the meds at least a month to work. Some like Keppra take time to build up in the system. My understanding is that you may find a "silver bullet" that works one month, and a couple months later, it doesn't and you try something new.
My daughter's seizures were not stopped with all of the meds we tried, and to go up on a more effective dose knocked her out all day. We ultimately got her started on the ketogenic diet through Children's Hospital, and it has made all the difference. She has a third of the seizures she had before, and we actually have gone down on the dose of medicines she is getting per doctor's instructions. Good luck with everything!