Skip to main content

Better Living Through Chemistry

After four days of being on Keppra, it seems that we have a handle on the seizures! Day two he was still seizing so the neuros recommended doubling his dose. I played it safe and upped the dose to 1.ml instead of the 1.4ml. Yesterday he had his EEG. Of course it had to be during one of the biggest snowstorms of the year, and super early in the morning to boot. However, Leo handled having 25 plugs stuck on his head with good grace and we got out the hospital in a decent amount of time. We haven't gotten the full results of that yet (not like we care anymore) but his PCP briefly dropped me a message saying there was good news from his EEG. So either he showed no propensity for seizures, or if so, they are ones that can be controlled. That's my guess anyway to what the "good news" entail.
My theory, based on mom instict, is that he is teething something fierce and that it's causing the low-grade fever and seizures. He has a very low seizure threshold, so even when his temp is slightly elevated he can start to seize. Normal kids have a high seizure threshold, though almost all can seize after a certain temp (106...) Our little dude seizes at 99. So it seems to me that even though he is still warm, he hasn't seized in two days. Thank you Keppra?
Today was a good day in our snowed in little cabin. The little lion got his mane trimmed and big sister practiced her photography. So sorry for all the pics, but I couldn't resist sharing some of the cuteness! We also had a special vistor, one that likes to come by and look in our windows...See the last photos..Love to all and thank you so much for all your love and prayers this week!












Comments

  1. That's great news! I love all the photos!

    ReplyDelete
  2. So glad the seizures are under control. Great pics, thanks for sharing...keep them coming :-)

    ReplyDelete
  3. Beautiful pictures. Glad to hear that Leo's doing better. ~Taylor

    ReplyDelete
  4. How wonderful they were that easy to control! I love the pictures - Leo is such a cutie! The owl is amazing too.

    ReplyDelete
  5. Thank you for the wonderful news and the great pictures! Glad to see that Nika is still such a ham.

    ReplyDelete
  6. I love that second picture. You can just tell that he loves you to pieces. It literally brought tears to my eyes.
    I am so glad to hear that his seizures are under control. I pray they stay that way.

    ReplyDelete
  7. Love all the pictures. Nika and Leo are so cute together. The kids and I have been doing some bird watching lately. It's remarkably simple, yet remarkably fun. You have incredible mommy instinct. Helped me through a lot of sicknesses back in the day. Love Marcy

    ReplyDelete
  8. They look so sweet together.I can see how much Nika loves Leo. His little mane looks great! Glad you have a beautiful place to live. Is that a snowy owl!

    ReplyDelete

Post a Comment

Popular posts from this blog

Pharmaceutical Fallout

I'm sure you guys are wondering what's been up with the Lion this past week after our worrisome VEEG adventure.  To tell you the truth, I feel like I've been taking shots of Leo's drugs and consequently feel dull and numb and just plain depressed. That is now of course, two days ago I was running high on adrenalin and resembled a charging rhino. I'll tell you why: So after being put on his new drug, Trileptal, Leo definitely started having a cessation of seizure activity, unfortunately however, he also started having severe headaches, photophobia, inconsolable crying and then in the last couple of days, a rash on his thighs, face, and hands. Just as an FYI the word "rash" is a magic word that will open the doors of the medical castle faster and slicker than a trojan horse. It's true, one does not mess about with allergic reactions. He was seen by his neuro within the hour, and after some bullying and grilling from yours truly, the action plan was det…

Not Your Average Special

Leo. This kid. Honestly? Life with the lion can be quantified in two parts: into a simple 60/40 equation. The 40 being the happy normal parent feelings, and the 60 being sheer exhaustion, confusion, worry, and what-the-hell-is-it-now feelings.  All normal right? Just another day in parent land. Wrong. I have always been an advocate for down-playing the special neediness of special needs. Yeah, yeah we all think we are special in our own unique hardships, get over it. We all have crap in our lives to deal with. But I might be starting to change my outlook.  Just a bit. Case in point: Leo and consequently me and everyone else who lives with him, have now been dealing with daily seizures for well over a year. Ok it doesn't sound that bad, when you string the words together and type it out into a sentence; there are way more scary sentences out there like "your child has a terminal brain defect" sentence etc etc. That sounds way more scary than daily seizures. This I know f…

The Rhythm of Life

When I think of the word rhythm, what comes foremost to my mind is a picture of my grandpa's metronome. My grandpa, when he lived in Russia, was a fairly well known voice professor who dedicated his whole life to the perfection and instruction of the human voice. As long as the human in question was applying said voice to opera and only opera, that is. Opera, in my grandpa's mind, was the only music worth bothering with. All other music he condescendingly referred to as "the bebop" with a lot of Russian eye rolling and sighing. He taught me about rhythm by sticking his old wooden metronome on the edge of his piano, and commanded me to never take my eyes off it during the whole voice lesson. Since it was conveniently eye level to my ten year old self it was pretty easy to get completely mesmerized watching the little weighted metal stick swish side to side, side to side, side to side.  I'm thinking now, almost twenty years later, that it may have been part of gra…