I haven't posted in a while because everything around here has been busy and we have been in quite a routine and there wasn't really anything major to report but unfortunately, that did not last long.
Just over a week ago Rayleigh started having tonic seizures again. This is where her body tenses and her breathing slows drastically. Her face looks worried while it happens which is the most heartbreaking part. Her seizures before this were more like head drops, pauses and other 1-3 second seizures. These tonics last about 30 seconds total give or take. We use her VNS magnet as soon as we notice the seizure and that usually shortens the seizure or stops it all together but sometimes it doesn't seem to help with the seizure at all. Bug is having about 5 of these tonics a day.
When they first started it was very stormy here in Oklahoma and we attributed the increased seizure activity to the barometric weather pressures because it always seems to have some kind of negative effect on her seizures. But we soon realized, in between storms, that this was much too worse to be caused by weather changes.
We spoke with her neuro and he said we may need to make some medication or VNS adjustments but first he wanted us to try using her Clonazepam PRN, 1 pill twice a day for 3-5 days. After 2 full days on the Clonazepam we noticed a decrease of seizure activity BUT her mood was inconsolable. She was literally irritable and uncomfortable all day long, so we didn't do any Clonazepam on the 3rd day and she started getting calmer and happier through the day and the next day. But today, she is unhappy again.
We've doing rounds of Tylenol/Advil and providing lots of stimulation by rocking, bouncing, swinging, and snuggling but everything is only temporary relief. Her neuro isn't back in the office until Wednesday and we see him then but I, being mommy, want to fix her now. Moms know that there is no worse feeling than knowing your child is hurting and you can't do anything about it.
I don't normally reach out for prayer request but we could use some now. Please pray for Rayleigh's comfort to return and for her pain to vanish - and pray that Michael and I can find a way to keep our girl happy until we can see the doctor about this. Thank you so very much :)
Hey! My name is Kelli, and my husband and I just so happened to stumble across your page when searching about the VNS magnets! First off let me just say how beautiful your daughter is! She truly is a miracle! And we could tell right from the start that her parents are amazing too! My son just had his VNS placed on June 11th. I read some postings on your blog, and the more a read, the more I was in amazement how much our kids are alike! I also saw that you live in Oklahoma--we do too! Kannon (our special sweetheart) is also 3 and has epilepsy and a genetic disorder. Kannon also went through the transition process from SoonerStart and began going to school this year! Kannon's birthday is April 1st (April Fools Day :) I would love to talk with you more about our kids! I write about Kannon on a blog also at www.lovelythingsaboutkannon.blogspot.com and I have a Facebook for him also called Lovely Things About Kannon. I would love to talk with you if you are open to it! Have a great day! God bless!
ReplyDeleteHello Kelli! I'm sorry I sort of abandoned my blog! I have Liked Kannon's FB page. I would definitely love to chat with you more and learn from each other about our children!
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