Thursday, June 25, 2009

Cycle 1 - week 3 summary

Will's counts remaines strong this week, the 'sore' in his mouth (probably just a canker) has resolved and he his sleep seemed to return to it's previous schedule. The only impact thus far seems to still be related to the once a week steroid dose Will receives. THe night of, and the night after, his sleep is disturbed and his appetite is voracious. His mood is volatile, he can become unusually angryr, he is saying things and acting out in a manner he has previously never exhibitied (being defiant, kicking, spitting, hitting) and throwing tantrums over denied request for absurd amounts of food and drink. As we enter the 4th week of the cycle that did not require a dose of steroids or TPI we hope he returns more to his usual kind temperment. While always very active and fidgety he was never defiant, angry, rude, or defiant. Otherwise we see no other side effects from his therapy.

Sunday, June 21, 2009

Cycle 1 - week 2 summary

Will developed a canker/mouth sore towards the end of the week.
Will normall would sleep 9 - 10 hours per night but was sleeping 12
Even with that sleep his mood and behavior seemed like a 4 year old in need of a nap. He was cranky, whiny, and moody and had more temper tantrums in a one week period then he has had in his entire life. He is always asking to eat more and more food and while we did not let him eat too much he went from 58 to 61 pounds in 1 week. This is the most Will has ever weighed. Other than the canker/mouth sore all of these sound like they may be steroid related which seems odd given how little WIll has taken.

The day Will gets his dose, and the day after, is a day where he has a very hard time getting to sleep, almost as if anxious or full of caffeine. A day or two after this goes away. His face still looks bloated as well.

Other than these seemingly steroid related issues he exhibited no other side effects than perhpas being a bit tired.