It's 9:30 am and I haven't seen a single seizure since Emily woke up. KNOCK ON WOOD! Bang bang bang. :) Some have asked me about her medications ... she is now on Keppra and Banzel, both twice a day. She was weaned off Trileptal. She gets klonopin dissolvables orally for seizures over 3 minutes, and then a second dose 15 minutes later if she's still seizing. If she continues to seize 30 minutes after the second dose, she gets diastat. I think that the klonopin stays with her for a while, so it's making her more dopey and wobbly. Usually the first dose of it is knocking out her seizures, but only for a few hours. So she's getting the klonopin 2-3 times a day. I know it contributes to her wobbliness and grumpiness, but it's better than non-stop seizures.
They told me in the hospital last week that if I don't break up the long clusters of seizures, they will lead to status. I am terrified of status. So we do what we have to do to keep her from clustering a long time.
In the meantime, I am doing laundry, cleaning bathrooms, writing tons of notes, and getting ready for my cruise. I leave on Friday, my 35th birthday! :)
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
15 comments:
Banging on wood here too! I hope you can relax and enjoy your cruise and not worry too much about your princess. Although that is impossible I know!
Hoping and praying for Emily!
I so hope things continue to stay quiet! She needs a break!!
Praying!
Emily sounds exactly like Taylor. She has clusters of seizures and has been in status several times. You are right...they are not fun.
Taylor takes Keppra, Banzel, Zonegran, & Klonopin.
Thank you for your kind comment on Taylor's blog. As for her VNS surgery, we've had a run of bad luck the last 3 years. Taylor had hers firs implanted in 2000 in Atlanta by a neurosurgeon. She was only 10 so he decided for cosmetic reasons, to implant the device under her breast tissue. Of course she didn't have any to speak of at 10. Fast forward to 2008 when the battery died and the device needed replaced. Now an ENT does the surgery as he's more familiar witht the neck. He didn't like the placement but was stuck with it. He replaced it but unfortunately, it fell down and was pushing on the scar. He tried another surgery pusthing it farther up, it fell again. Last year he took it out and placed another incision higher up on her chest. That one worked for a year when the originals wires broke. This time they had to go in and replace the wires which is very tricky. They actually just cut the old ones as far up as they can, leaving them connected to the vagus nerve.
Sorry this got long. The VNS does actually help Taylor not have the big drop seizures but nothing has ever made her seizure free. Not even her corpus callosotomy.
I wish you good luck with the VNS. 11 years later, they now know the best places to put them so you won't have the problems we've had.
I understand exactly what you are going through and you and Emily are in my thoughts.
OOOO a cruise? How did I miss this adventure? Where?
Happy almost Birthday! What a fun gift to be going on a cruise. Praying that Em's seizures become less and less.
Praying for Emily and praying for you...I bet you are going to have a long week preparing for your big trip! Have fun and Happy early Birthday!!!
Knock, knock, knock! Praying that the worst is over for Emily and that you're able to enjoy your cruise. Yay!
wahoo! Praying for seizure-free days and a terrific cruise!
A tip about Klonopin: ask your doctor about Clobazam, which is a derivative of Klonopin but far less habit-forming with fewer side effects. The only trouble is that you have to pay for it as it's not FDA-approved. Our neurologist faxes the prescription to a pharmacy in NYC who then gets it from Canada. It has really helped Sophie get through rough spots and evened out her sleep (Klonopin was a nightmare for her, causing irritability, drooling and anorexia).
I'm glad to hear that the Banzel is kicking in and that Emily is a bit more stable. I'll keep myfingers crossed and prayers flying!
Knocking on Wood that the seizures stay away!
How exciting, a cruise for your birthday. Hopefully you will be able to relax and be able to put the day to day stress of taking care of a special needs child further back into your mind.
Oh yeah, once you finish cleaning your bathrooms, can you come clean mine? :0) The MOST dreaded chore of my day!
My son has a very long history of seizures as he has Ohtahara syndrome. He suffers over 100 distinct seizures a day, despite three medications and the ketogenic diet (vns was ineffective). But when he has large seizures I always give diastat (valium) as first line defense. Allowing her to seize for more than a few minutes is dangerous, period.
If you still feel comfortable with the long seizure period you might consider measuring her blood sugar to make sure it doesn't dip down too low.
How fun, enjoy the cruise..you deserve it! I hope those seizures stay away.
Im catching up here on your more recent posts and my heart is just aching for you. I can so relate. My 15year old is having increased seizure activity as of late. Well,her seizure disorder started at 4months of age and has never been controlled with meds (though she can go a few months without a seizure). I too know what you mean by being petrified of status epileptus. My daughter has gone through status about 10 times when she was very young. Unfortunately,she suffered a great deal of brain damage from these 30 - 90 minute seizures. It is awful. I cannot offer anything other than my prayers and hopes that things will improve. I know that my daughter's seizures DID become less frequent as she got older. Hang in there...both of you.
You haven't posted in a while. I hope all is okay. Just wanted you to know I'm thinking of you! xoxo
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