Sunday, April 3, 2011


We expected to hear more information last week. However, as the health system goes, answers rarely come quickly. Ever heard of "too many cooks in the kitchen"? Which is a good thing I guess as we know people aren't making rash decisions.

The outcome of R's VEEG stay in the hospital. Is one that takes our breath away, B & Me. It is one that we never wanted to hear. It is one that from TSC day 1, I have always said in my heart and head, nope, not for us. Please don't ever let this be for R.


The reasonable, kind, gentle, friendly bedside, filled with knowledge neurologist Dr. B is suggesting that the best route to go for R would be to remove the tuber (benign tumor) from his right temporal lobe.

The meds aren't holding these temporal lobe seizures at bay. He is at the top of the doseage scale for Trileptal. There is a 3% chance that other AED meds would have a positive affect. The side effects from these meds aren't worth the trial and error effort and then disappointment of 3% odds.

There is an 80% chance of surgery stopping these seizures.

If left as is....the seizures will intensify. Memory and cognitive development will be affected. Also, there is a correlation between temporal lobe tumors and Autism.

I don't like it. Not one little bit.

Even with the reassurance of how often these surgeries are successfully done by R's doc.
It. we wait.

R's case was being presented on Monday to the overall Neuro team. It needs to be a consensus, not just Dr.B's decision. Two other little guys were being presented on Monday and each case takes I don't know yet if Bup was really discussed. My two phone calls and two emails have been heard/read, but not responded to.

The MRI needs to expedited from June22 until like now!

There will be no grids. No PET scan either. Does this mean it's all very straightforward? I hope so.

Surgery could take place within 1-2 months.

I have my own research to do.

And so we wait. And hold our breath...hold our squishy little boy close....while his future is held in other hands.....while we secretly shed tears...and get angry....and scared....and wait.....


  1. Awwww...poor R! I hope the team makes the best possible decision for R...may you find peace in whatever outcome they are proposing....try not to research too much my friend...sometimes ignorance is bliss....atleast until immediately confronted with their decision....good luck my friend....

  2. I'm sorry I haven't been by sooner! Any more news? My heart is with you my friend.
    It's not fair to have so many worries for your sweet little boy.
    I will pray that he's in good hands. Hope and faith!

  3. ((((((((hugs)))))))

    You know I know...



  4. To all of you...who comment and those of you who do not...cause I know you're out there....
    A many hugs right back at ya!;)