Monday, March 29, 2010

Options, options, options..... But what's the right thing to do???

Well, Matt and I had a whirlwind trip to SF a few weeks ago.  It was really quite fun to go with just him.  We were gone for 36 hours exactly.  We arrived Tuesday afternoon and spent a few hours wandering around SF.  We also went out to dinner, to a CREME PUFF shop that was next door to our hotel and then I took him to see Avatar in 3D - there was a theater directly across from our hotel.  The next morning we woke up, had breakfast, wandered around for another hour or two and then headed over to the medical center for Matt's appointments.  After his appointments we caught a cab and headed directly to the airport and home!

(Here's Matt in the cab on the way to his appointments. We were laughing because his hair was blowing and standing straight up!)

Dr.Lustig was happy to see us and teased Matt since last time we had an appointment with him, we had to meet him at the hospital due to them finding more blood clots and Matt landing himself in ICU.  That was an adventure.  This time went much more smoothly.  We went fully intending to schedule a time to do the vagotomy.  Dr.Lustig is still on board with Matt having the vagotomy.  However, as I've mentioned before, it is very experimental - 4 children have had it and have follow up stats for a year.  I guess Matt is part of an elite group! :)  After we met with Dr.Lustig, we went to go see Dr.Farmer.  She is the surgeon who would actually perform the vagotomy.  She still does not want Matt to have the vagotomy.  She thinks he is doing too well to perform such an experimental procedure.  In other words, he doesn't have any obesity related diseases...... yet.  She does agree that the issue of the hypothalamic obesity needs to be addressed and she suggested Lap Band surgery.  It causes a very gradual weight loss and is reversible.  I like both of those things.  However, it is unclear whether lap band will work on kids with HO since their weight gain or loss does not seem to respond to diet and exercise in any normal way.  So, now I'm researching Lap Band.  I just contacted a doctor in DC who authored a study on Lap Band surgery in adolescents.  I wanted to know if any of the participants in the study suffered from brain tumors/injury to the hypothalamus or pituitary.  I heard back from him right away - he seems truly amazing, as well!  None of the subjects in the study had HO.  He is going to call me on April 5th to discuss whether he thinks Lap Band might be a good option for Matt.  By the way, isn't the internet amazing??  I LOVE having access to these doctors that specialize in Matt's complicated issues.  Overall, they are amazingly responsive and kind!

So, now I'm back to the same point I've been for the past year.  What to do???
Do we do the vagotomy? (experimental, permanent)
Do we do a lap band surgery? (experimental in kids with HO, reversible)
Do we just put him on Growth hormone and think about it for a few more months? (may not address weight issue, will likely make him FEEL much better)
Do we do nothing and just let him gain 100 more pounds this year - all the while watching his younger brothers out eat him at every meal....? (not really an option.......)

My decision wavers almost every single day.  Today I'm feeling like Growth hormone is the way to go.  We can see if that helps his weight loss and muscle building and energy.  If we start the GH, we need to wait 6 months before we do anything else to treat the obesity.  Is pushing off treatment a good thing because it would buy us some time?  Or is it a bad thing because we are delaying treatment that needs to be started sooner? 

Warren and I both feel so conflicted!


Handsfullmom said...

No advice from me, just wanted to let you know you have my sympathy as you grapple with the decisions.

And it IS nice to live in the internet age where you can more easily track down experts, isn't it?

Jessie said...

Oh man, that's so much deliberating! That would drive me nuts. And I'm sure you've prayed and haven't gotten that "sure thing" answer yet. Sigh.
I sure hope you're able to find peace on the matter soon. I have a feeling you will - amazing as you are.

And yes, thank goodness for the internet, when it comes to researching stuff.

Donna said...

I cannot tell you how helpless I feel. You and Warren are such special people. Matt is so blessed to have intelligent parents, that are doing everything in their power to help him. My prayers are with you every day. Grandma J.

Ben said...

Hard choices! Prayer is such a great thing at a time like this. I know if you pray sincerely, you'll get your answer.

We are back east getting treatment right now, (been here 5 wks, and 3 more to go) and it is because of prayers that miracles have happened for us. I know it will happen for you too.

I definately agree that the internet is fabulous! That is great that the doc responded so quickly to you.

The Huffies said...

Allison - I am praying for you guys and hope you can determine what to do - it is so hard sometimes to figure out what's best, isn't it?? I hope and pray that things will be resolved in a good way for your family and especially for cute Matt. Best wishes, please keep me posted.