Thursday, July 1, 2010

They're Lurking - TSC

Recently, over the past few weeks, we have seen evidence of those pesky seizures lurking beneath the surface....trying to push their annoying way our Bup.
R will come to us with his right arm held partially up, his hand floppy and bent at the wrist like it's broken, stating,"My hand is wiggly."
Now, we know that R has a tumor in the "right hand centre" (that's definitely a technical, neurological, medical description of location!) of his brain. Also, in the past, when R was seizing on a regular basis, his right hand and arm was affected both with tremors, stiffness, the inability to use his right arm and hand as well as showing left hand dominance.
Bing! Bing! Bing! The seizure alarms went off for both B and I! Even though we weren't seeing any other evidence. This "wiggly hand" was happening too often and Bup would always alert us to it.
Thankfully, he's on a low dosage of Keppra and Dr. Neuro quickly responded via Super Neuro Nurse to increase this dose. After two increased doses, the wiggly hand has disappeared so far. Woot! Woot!

Let me tell you, our hearts all but stopped with the threat of seizures again. It's all worked out and Bup is fine, but it's just a reminder that there is "stuff" going on in his little brain and body that we easily forget about now that he is seizure free, and the meds are working. It makes my stomach sink and heart squeeze with fear that Bup could possibly be en route to living a seizure riddled life again. All is well though. Just a little reminder that we need to be grateful, keep our eyes open and hug our little man until he yells, "Please stop!"


  1. I can only imagine how scary the thought of seizures returning would be. You are right, we need to really appreciate every moment to the fullest and remember to hug our kids lots :) Glad that the new dosage did the trick and hopefully it wont go any further than that. *sending you good vibes*

  2. Oh sweetie...I've been there and have the shattered pieces of my heart to prove it. And as cliche as it sounds...seizures suck. Speaking of...I ran across the funniest little website tonight while I was researching the things us seizures mom research on American holidays when the rest of the world is drunk. :) made me chuckle when the author referred good-naturedly to neurological disorders as "brain cooties"!



    Wrap your little man up in the tightest hug...with your protective mommy eyes open.


  3. my heart goes out to you. Hope everything will be ok. Hug him even when he says stop.

  4. Hugs for little Bup...and Mommy and Daddy too!


  5. Glad to hear that the change in meds made a difference so fast. HUGS to all!

  6. I'm so relieved and thankful to hear the meds are working. I know the fear you live with. The fact that my little Pay is finally seizure free still seems too good to be true. But you're right to cherish each moment and to wrap your little one in a big hug. Come what may and love it anyway.