Sunday, May 10, 2009

More San Francisco, More Questions.

This past week, Warren took Matt back to San Francisco to talk more about treatment options regarding the hypothalamic obesity. The bad news is that the testing confirmed the diagnoses. Matt's insulin levels during his oral glucose tolerance test were off the charts 30 minutes after beginning the test. It should take about 90 minutes for his insulin to 'max out' and it shouldn't ever get as high as Matthew's was. Also, although we've been pretty happy about Matt's weight gain this month (after all, it was only about 2 kg.!), the doctor was very worried. Because we track his weight in Kgs., it doesn't register how much that would be in pounds. On the one hand, two months ago he gained 5 kg. or ELEVEN pounds in one month. That's why 2 kg. feels pretty stable! However, that is 4 lbs. With a gain of 4 lbs. a month, Matt is on track to gain 50 lbs. over the course of a year. When you put it that way, it's much scarier! Also, because he has had several months of even more extreme weight gain, he is actually on track to gain closer to 70 lbs. this year. YIKES!!!

Warren and Matt also met with the surgeon who is working with Dr.Lustig and actually performs this experimental surgery. Warren was really impressed with her - she is the head of pediatric surgery at UCSF. She was leery of doing the surgery just yet. For one thing, she didn't think that Matt looked 'that bad' yet. The other children who have had this procedure are so big they can't fit in the MRI machine...... I don't know how I feel about that. Do we really need to let it get that out of control before we try something aggressive to help him? I'm uncomfortable with the 'do nothing' route just because we happened to catch the hypothalamic obesity earlier than some other patients do. Her other rationale, though, made more sense. She is also not willing to do the surgery until Matt's cancer treatment is finished. Her fear is that by doing the surgery to treat something secondary to his cancer, that the cancer treatment options will be limited. She is not willing to risk that. So, we have a slew of appointments on Tuesday (MRI's, Neurosurgery, Oncology) and we will try to determine the best course of treatment for Matt's remaining tumor. I am also anxious to get these doctor's opinion on the surgery itself. I trust our doctors (especially Dr.Walker in Neurosurgery), and think it's a good idea to discuss risky, experimental procedures with them! Later next week we also have an appointment with Matt's local endocrinologist. We are going to discuss the possibility of using the medication (Octeotride) to treat Matt until we are able to get more clarity on the surgery. It feels better than doing nothing!


Deborah said...

Good luck with all the decisions you have. I hope you are able to figure out something that works well for Matt so he can be done with all of this.

Ker-Dog and the gang said...

Allison I can't imagine facing such big decisions for my children. Matt is lucky to have such great parents! Hang in there and keep us posted! you are in our prayers!!!

Heather Parry said...

How blessed Matt is to have you and Warren making his medical decisions for him. What a lot to think about. I hope that you can figure out the hypothalamic obesity puzzle. On top of everything else, what a pain.

Thinking of you.

Tara Bergsjo said...

I hope they can figure out something for him. You have so much on your plate and you always seem so strong! You have such a wonderful beautiful family. I will keep you in our thoughts and prayers!