Tuesday, August 07, 2007

More Medical Mysteries

So, Firecracker spent last week in the hospital hooked up to an EEG and confined to the area of her bed covered by a video camera. We had to deprive her of sleep, drop her meds, and keep her off food and water between 8 am and 3 pm every day. She has had seizures since age one, and she had an MRI at that time that did not reveal anything. Her MRI this time, however, showed lesions. The goal with the hospital stay was not just to record her seizures but to catch her in one, shoot her full of dye, and wheel her in for a contrast MRI. She also had a CT scan and will have another MRI next Monday. Then the epilepsy team at the hospital will confer and decide what course of treatment we should pursue. It took the whole blessed week for them to catch her at the right time.

One of the concerns is that she may have something called Tuberous Sclerosa, which is a genetic disease that causes benign tumors to grow in the brain and other organs. This would be a very discouraging diagnosis, since there is no cure for Tuberous Sclerosa, and it’s impossible to predict what impact it will have. So, because she doesn’t have any skin markings associated with TSC, she will have a special test done to determine if she has the genetic markers. If it’s not TSC, it could be scar tissue from a brain bleed, or it could even be related to celiac disease (the doctor ordered labs to determine if she is gluten intolerant). Whatever it is, the lesions are placed in areas responsible for language, mood control and executive function, and that tells me there’s a long, difficult road ahead.

Needless to say, last week was just awful. Added to that, my MIL came into town to help and ended up alienating the nurses and doctors. She told the neuropsychologist that she didn’t believe in IQ tests while he was trying to evaluate Firecracker, and she generally tried the patience of everyone by being bossy and demanding. She came with the best intentions, to be helpful, but she is really not at her best when over-tired. She has a tendency to parent my children that I find really annoying. But I’m not very good at maintaining firm boundaries, as Dear Husband is always pointing out. She also seems to have fed Firecracker nothing but sugar during the entire hospital stay. I am now working on getting her to forget that glazed donuts exist. Ironically, MIL got uptight when I was going to let Firecracker have a second piece of sugarless gum (one of her parenting on my behalf moments). Gum – donuts. Call me crazy, but I prefer a stick of fake sweetness to a ring of lard coated in sugar. Well, actually, I adore donuts, but I don’t think I need to encourage that in my offspring.


  1. I simply cannot believe the luck you all are having around that household this year. Goodness, you have got to be at your wits end...

    I'll continue to pray for you and your daughter's health and your family in general.

    God bless...

  2. Praying for you and yours....MIL's need boundaries...I AM a MIL....

  3. Healing hands from here in Mississippi. Glad you're back for a post, been checking for awhile now.

  4. My good God.

    I haven't checked in for a long time. So sorry that you are having YET MORE medical problems...!

    blessings and prayers coming your way.

  5. I will add my 2 or maybe 3 cents about the MIL, that she was driving us all crazy, especially the MIL's son.

  6. ouch!

    I like donut too :) but try to avoid them

    I think the problem might not be so much as you not setting boundaries but those boundaries being violated and you not knowing what to do/say when that happens.

    hugs and prayers for you all - not on FC

  7. Golly, BA, that sux. It's the waiting and testing and waiting some more that sux the most. It's like, at least once you know something you know it and can move forward.

    You've all been in my prayers and I'll keep you there. And I know sometimes a sane person to respond to that with, "Uh, guys, not sure it's working here". But I always figure we never know how rough things would be if we weren't praying.

    Hi. Call me Pollyanna.

    Hang in there.

  8. Please keep us posted, no matter how hard it may get to write. I'll be adding my prayers to the pile.

  9. I'm so sorry for this difficult time.

    I will add a small prayer for you and yours in my daily prayers.