Monday, September 19, 2011

An Enigma Wrapped in a Riddle

"It is a riddle, wrapped in a mystery, inside an enigma; but perhaps there is a key." - Winston Churchill

We always say "if it's not one thing, it's another." Miss Sadie continues to be a mystery. The seizures are relatively low (well, for Sadie's standards), but she has not been herself lately. She is restless, irritable, not eating and sleeping well. She is also not as interactive as she once was. It's been about 2 weeks since we've seen a smile (very un-Sadie-like). This lack of recognition and interactivity just tugs at the heartstrings, especially because this was once one of her strengths. We're trying to figure it all out, but it's as if we have 12 puzzle pieces from 12 different puzzles.

We thought we solved one piece of the puzzle when the docs found another UTI last week. Yes, her fourth UTI...which we think is happening because she tends to hold her urine for hours on end, then bacteria builds up and before you know it, another infection.

However, we are now on day 4 of antibiotics and Sadie has not gone back to her happy-go-lucky self. My current theories are a Dilantin level that is way too high (when in doubt, blame the Dilantin) or a side effect of weaning the vigabatrin (maybe it was doing more than we thought).

Sadie's oxygen requirements have also been up and down. She'll do great for a few days off oxygen, then for some unknown reason, she'll need it again. We had a great appointment last week with Mary Massery, a PT who specializes in kiddos with respiratory issues. Since Sadie has developed her propensity for oxygen, Mary's name has been brought up by numerous people. She is in such high demand, that it took 6 months to even get in to see her! She was able to provide some great recommendations for Sadie. Maybe we can get her off this oxygen once and for all!

The biggest news of the past few weeks is that we've heard back from the doctors at Cleveland Clinic regarding a second opinion on Sadie's treatment and possible surgery. We will be traveling there in early October for some testing and a surgical evaluation. While she is there, Sadie will meet with Dr. Elaine Wyllie and will undergo a PET Scan and an ICTAL SPECT . The ICTAL SPECT is a test where dye is injected during the onset of a seizure, the dye pinpoints the location of the seizure activity in the brain. It can be very helpful for doctors in surgical planning.

Sadie will be hooked up to a Video EEG in the Epilepsy Monitoring Unit during her entire stay at Cleveland Clinic. This will enable the docs to capture as much brain activity as possible.

We hope and pray that this team of doctors can help us determine the right path for Sadie's treatment. Perhaps they can find the key to unwrap this mystery.

1 comment:

  1. Dear Cathy,
    When we prepared for our son to have his hemispherectomy, the most helpful thing any of the doctors said to us was that we shouldn't think of him afterwards as having half a brain, but as having a brain of one hemisphere instead of two. It's more than half a brain because first of all the deep structures in the brain stem aren't touched (i.e. the two hemispheres together are not the whole brain in the first place), and second the remaining hemisphere will grow, not only in function as it compensates for the missing hemisphere, but in physical size. Our neurosurgeon estimates that our son's remaining hemisphere will end up taking 2/3rds of the cranium."Half a brain" was a terrifying thing to consider, but this way of thinking about it made us less fearful. And like many have said on the yahoo group, it was the best choice we ever made for our son. Maybe one thing you could plan to ask the doctors when you meet them (I'm sure they'll tell you anyway) is how good they think the remaining hemisphere is. And even if it's not perfect, we've learned that children do so much better with a reduction in seizures coming from a hemisphere that is already contributing nothing BUT seizures--losing that hemisphere, in most cases, doesn't mean losing anything useful to the child, only losing bad stuff that is making things worse for the good hemisphere, which could do better on its own. I wish you could see our little boy now, a year and a half after his surgery. He is ALL THERE, with or without that hemisphere. Good luck and God bless.