In the craziness of moving, preparing for Easter and our trip to the beach (where I'm writing this post), I almost forgot to tell everyone about my latest call with Abigail's doctor at Duke. Now that Abigail is on the maintenance dose, we only have to drive to the Duke Clinical Trial Unit every 6 months for lab work. In between those visits, the doctor calls to check in to see how she is doing, and to see if there are any issues or concerns. I had not heard her IgE lab results from our January trip to Durham so I was anxious to find out what her new numbers were.
Her IgE number is in the single digits! That's incredible! Our goal is to get her number to 2 by the end of the study. We are on our way. Her number is now 9.28. With a year still to get there, I quote our doctor, "Abigail has a really good chance of kicking this thing."
Her IgE numbers are following the pattern that they are seeing with the other clinical trial participants. When Abigail was 18 months old, her number was in the 14 range. When she entered the study at age 7, her number was 10.4. During the study, it spiked to 16.7, then down some to 15.5, then 12.9 and a year and a half into the study she's at 9.28. One of the biggest conclusions the staff at Duke has made is that this process takes time. They increased the sublingual immunotherapy study length by 6 months for a total of 36 months instead of the original 30. They've found that the extra time is getting the numbers that they want to see.
While Abigail's IgE numbers were in the teens to start, Duke is still seeing the same trend with children that start with numbers in the 300's, 800's and even 1000's. The number curve is still the same. The numbers spike and then drop along the same curve. I have a friend whose daughter's IgE number was in the 300 range, spiked up over 500, but is now in the 50 range. It sounds like a long way to go to get to 2, but her percentage change is in line with Abigail's. Her daughter is just seeing the drastic changes while Abigail's change of 2 to 2 1/2 points is equally a big deal.
Bottom line...it's working! We are so blessed. You guys hang in there too. The latest trial that Duke is doing now is administering the peanut protein via a patch. I really believe doctors are doing everything they can to make this process of desensitization as easy as possible to administer so that it can be done by allergist and doctors beyond those involved in the trials.
6 comments:
Wow, congradulations. I pray that it will be able to help all people with allergies sometime in the next few years.
Allergy Mum - http://allergymum.blogspot.com/
great news. I just read about eh patch recently, interesting. When Abigail started did they have to give her a reaction to prove her allergy? They are doing that now and I am scared about that part. So is my 5 year old. I don't know if I can start off the trial like that.
OMG! That is awesome! :) So great to be able to actually "see" some results. I mean, it is so hard to measure success with an allergy...it isn't like you can just test it out with real food whenever you want! So, it is nice to see a tangible measurement in the IgE levels. Even though IgE doesn't tell us much about the allergy itself (other than to just say you are allergic), we do know that any number under 2 is the golden number for peanut! So, it sounds like Abigail is on her way to number 1!! :)
I can't wait to get the same results for our son! :)
Laura - are you starting at Duke too? My son is starting in May! Yes, he does have to have a reaction that first day and it scares me the most too! However, I have talked to other parents and they said that is the worst of it and as soon as your child shows any tiny reaction, they stop and give treatment. My son just had surgery and having him be under general anesthesia was way worse in my mind! I mean, he has had a reaction already and this one will be about as controlled as it can get. I am also planning for that day 1 reaction to be his last one EVER! That is why we are doing the clinical trial!
Lisa, we're not involved yet, just waiting for one in his age group to start. But this new info has me leary. I know in the long run it would be worth it, hopefully! Just hard to start out like that.
When Abigail started the trial, a food challenge was not required. Now though, all participants have to start the trial with a challenge.
Abigail did have a food challenge at the 1 year mark so I can attest to the high level of care given by her doctor and the staff at Duke. Doesn't mean I wasn't nervous. Regardless though, there really is no better place to be than Duke to determine your child's allergy threshold. Every single safety precaution was employed and she was monitored for even the slightest sign of a reaction.
We definitely had an advantage in that we had a year to get to know our doctors and the staff prior to the challenge. We were comfortable going into it because we were confident in the level of care and concern shown to Abigail throughout the trial. Bottom line though, a food challenge at the start is a small price to pay for the outcome.
Lisa, it sounds like your son did okay with his recent surgery. When our son was a toddler, he had surgery to put tubes in his ears and remove his adenoids. I still vividly remember the nurse taking him away crying and then the process of trying to wake him up after the surgery. It was very traumatic. It was a much worse experience than Abigail's food challenge.
Blogspot was down last week so comments didn't post. Here's one from Lisa:
Laura - we did our day 1 challenge and it went great! Scary, but I felt totally safe there! You can read about it at my blog - http://myadventuresinhealthyliving.blogspot.com/
They are about to stop recruiting for the DEVIL study (9 months to 36 months).
Oh, and yes, he did great with his surgery...and yes, it was scarier than the food challenge because I had to leave him! He was fine waking up though, they put in some extra sedative to keep him from scratching his eye, so that seemed to help him with the whole wake up process.
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