Moons...Harvest Moons.... and Thunderstorms

Update II:
We were instructed by our neurologist to take Ivey in to the ER if she continues to seize after we administer her Diastat and if continues having cluster seizures. Do you have Diastat? Once in the ER, they always start an IV of medication, the first typically Ativan. Under normal circumstances it takes three meds on top of her Diastat to get them controlled.

You need to talk to your neurologist and ask him to help you setup a 'plan' for days like this. I would do that today. Then have it with you in the ER. I would ask the neuro. to recommend the order of medications that he thinks would work best for Reagan's seizures. He knows best and that way everyone is on the same page. We were lucky the first few times we took Ivey in to our home ER, they were able to get our neurologist on the phone. Since then, the ER staff pulls up her records and do the same routine each time, because it seems to work.

Ivey's seizures have been lasting one complete hour so our ER staff is getting to know us really well. We have not had a seizure in recent months that has not called for a trip to the ER. I administer her Diastat, but she continues to seize and we head to the ER in a jiffy. Half of the time we are sent on to Scottish Rite Children's Hospital in Atlanta. Are you near a Children's Hospital?

If she is seizing in clusters I would definitely take Reagan in, make sure she doesn't have a bladder infection, ear infection, etc and double check her levels of her seizure medication. I hope this helps. Of course you probably already know all of this and I am merely singing to the choir! It is so frustrating having no control over these things. This definitely is an off week for us too. I hope Reagan gets these things under control - and fast!
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Update I: Yes, I suspect that it is pressure change, especially during thunderstorms.
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Seizures again...

Ivey had seizures again this weekend. We did take her in to the ER at Floyd. Ivey was treated with medication administered via IV then released to come home after observation.

Thank you to the ER staff who treated Ivey, and to all of those treating her in previous ER visits. I am especially grateful for those starting her IV's.

Normally Ivey bounces right back from her seizures. This week she has not. She has been irritable and fussy. Saturday morning Ivey had labs ran looking for infection or some explanation for a breakthrough seizure, all labs came back thumbs up. Today we are watching her closely for infection that might not have been present Saturday or for other seizures to pop up unexpectedly. She just has not been herself the past couple of days. Please keep her in your thoughts and hope for a quick bounce back.

Ivey's seizures have no definite explanation as to 'why' they occur. They are a result of her chromosomal abnormality. We adjust Ivey's medication accordingly with her seizures and have tried various combinations. At this point she should not have breakthrough seizures due to the dosage of medication that she is on at this time. Her levels are good. No sign of illness and no growth spurts.

Here's my question to other parents who have children with seizure disorders. We try to keep note of factors that might be triggering her seizures. For example illness, growth, time of day, her behavior, etc. Most often Ivey is literally playing one second - seizing the next. The only real consistent factor seems to be the moon and the weather. She seems to have seizures more frequently during full moons and thunder storms. Note the Harvest Moon this week. Does this trend seem to happen with other children with seizure disorders? I have asked our neurologist about this. Of course he can not say a definate 'yes' because there is no scientific basis for this. However, the trend seems to be there. Is anyone else experiencing this?