Sunday, April 15, 2012

A Duke visit update...finally!

So much for "I'm still here!"  I had intended to then pick up where I left off and keep the posts coming.  Life kept giving me more pressing issues to contend with including getting both of my children settled in new schools, our family accumulated to a new community and my desire to start addressing the "to do" list associated with a new house.  I'm quickly realizing that the list never ends and only gets added to.  Now, it's also the start of the summer gardening season, and I have a blank slate that needs to be shaped into a thriving garden.  So, if I'm going to keep posting, I have to just figure out where to carve some time and sit down and do it!

Having not updated anyone regarding our last visit to Duke (in January), that's the obvious place to start.  Unfortunately, the trip didn't provide a ton of writing material.  We drove almost 3 hours there, stayed for 30 minutes and then made the long trip home.  Abigail had to sit through a blood draw, but like other visits, she was a real trooper and did so without complaint.  Time has equaled experience and knowledge and study protocols have been amended including the amount of blood drawn.  The nurse took just 2 vials versus the 6 to 7 of previous visits.  They've also amended the frequency of skin prick tests to just once a year.  Abigail's last skin prick test was 6 months ago, so she was off the hook at this visit. The rest of the appointment was spent discussing the upcoming trial move to Chapel Hill and the food challenge marking the conclusion of our 3 year participation in the clinical trial.

At the time of our visit, they had already had 3 other children complete that challenge and consume the full amount of 5 grams of peanut flour, the equivalent of 16 to 17 peanuts. The kids had also eaten actual peanuts in the hospital setting just to make sure they could safely be dismissed to go home and eat more.  I'm getting excited all over again just sitting here typing.  Abigail breezed through her first challenge eating all 2.5 grams without incident.  Since then her IgE number has steadily declined.  I'm very hopeful that she will complete this final challenge as easily as she did the first.

Abigail will most likely do her food challenge in July, and this time we'll be driving to Chapel Hill.  The staff is currently wrapping up the move from Duke University Hospital to UNC.  Like the last challenge, it will be double-blinded.  She'll have to do two.  One with an oat flour and another with the peanut flour.  We won't know which one will be first.  Only the lab tech who mixes the flour in the food of choice, most often applesauce, will know.  I say that, but it won't take long to figure it out.  It's pretty hard to disguise the smell and taste of the peanut and Abigail will pick up on it fairly quickly.  If Abigail digests the full amount plus the real peanuts we'll joyously leave and take a month off from the drops and all peanut products.  We'll then go back a month later and do the food challenge again.  If at that time, she again passes with flying colors, we are free to go home and bring peanut products back into our house.  She'll be under no restrictions as to how much peanut products she can eat, but it's advised that she consume at least 1 1/2  to 2 peanuts daily in some form or fashion.  It's also advised that we continue to carry her Epi Pen.

There's more to write about the visit than I thought, and I'm not done.  I'm going to have to stop though and write a Part 2.  If I'm going to keep up with my posting, then I've got to make these short.  Right now, it's breakfast time and duty calls.  There have been changes made to the study protocol since our visit that I also want to cover.  I'll address those next time.

Thanks for everyone's continued support!  I hope I don't sound to blasse regarding the completion of the trial.  It's been three long years, and frankly, the entire family is ready to get on with our lives.  At the same time, we do realize how incredibly blessed we are to have this opportunity.  "Just a few more months" is quite frequently uttered around our house.  How incredibly exciting!!


Kylie said...

So exciting! It's nice to know that it is working! Congrats!

Lisa said...

Did you find out her IgE level from this last blood work? BTW - the person I know in the same trial...her son passed both his challenges! :)

Mom with a Mission said...

Thanks Kylie! Lisa, good to hear from you. When I asked, I got a funny number. It was rounded for starters, and it either hadn't changed in 6 months which I find hard to believe or our doctor gave us the results from a year ago. It was right during the move so I'm going to wait until they call to schedule our appointment at UNC and ask Pam. Either way, she qualifies for the challenge at the 3 year mark.

Yeah for her son!!