April 13, 2009

What we learned

We promised an update on what we learned about Bertrand last week.
  1. Bertrand can see, but his retina is beginning to cloud, and his optic nerve is beginning to atrophy. His vision is already degraded, and eventually, he'll be blind.
  2. His ears are in good condition, but the auditory part of his brain is damaged. His hearing is probably poor. They recommended giving him up to 20 seconds to process what we're saying to him. Eventually, he'll be deaf.
  3. His brain is experiencing frequent spikes in electrical activity. These spikes aren't seizures yet, but they will become seizures eventually.
  4. His brain is not demylenating, but it's not mylenating properly.
  5. His brain has had mild tissue loss.
  6. His brain is growing new tissue, but the new tissue is not healthy.
  7. His skeletal system is normal.
  8. His heart and cardiovascular system are normal.
  9. His nerves are showing signs of atrophy. Eventually, he'll be paralyzed and his senses will deaden.
  10. His liver values are continuing their steady rise, but they are not yet in a range which indicates damage is happening.
  11. He suffers from severe acid reflux.
  12. He experiences a dull pain over his entire body (peripheral neuropathy). This is what makes him very sensitive to touch.
  13. Cognitively, he is probably much more advanced than his tests indicate. They believe that he may actually be close to his true age cognitively, but this was difficult to measure through behavioral tests.
It's difficult to judge his life expectancy, but they feel has "more than months."

The damage acquired so far is permanent. Even if we were able to halt the progression right now, it's unlikely he'll ever be able to walk or talk. (But we're going to try walking and talking anyway!) In terms of treatment, stem cells can repair some of the damage, but only a treatment for optic nerve atrophy may be ready during his lifetime. There has been recent progress in reversing brain damage in rats with stem cells, but this is unlikely to be ready for humans within the next five years. Symptomatically, we should be able to stop the neuropathic pain and the reflux. After his lumbar puncture, we may be able to calm his movement disorder if we find he has a neurotransmitter imbalance.


  1. Stay strong - you are doing handling everything beautifully!

  2. I can't type... I meant to delete "doing" in that previous comment... :)