Tomorrow is the big day! It's food challenge time. Time to see if Abigail's body is ready to stop the peanut protein drops and start getting the real thing.
We're heading out after lunch today to go to my parent's house which is just 30 minutes from Chapel Hill. Given that Abigail and I need to be at the hospital tomorrow at 8:00 am, their house is very conveniently located. It's also nice that they can keep my 5 year old. The day is going to be long enough as is.
The challenge is blinded and Abigail will have to consume both peanut flour and oat flour. She'll know quickly what she's eating. It's pretty hard to disguise the taste of peanut flour. We're praying that the lab sends the peanut flour first. There's an hour between challenges usually coinciding with lunch time. If she has the peanut flour first thing in the morning, we can leave as soon as she finishes the oat challenge in the afternoon, around 3:30. If she gets the oat flour first, then we have to wait two hours for evaluation after she finishes the peanut challenge in the afternoon meaning we're there till at least 5:30.
As soon as we get there tomorrow, they'll put numbing cream on Abigail's arm so they can insert an IV. After the IV is inserted and all safety precautions are in place, they'll begin giving her applesauce mixed with doses of flour at timed intervals working up to the highest amount. A nice perk is that our doctor from earlier visits to Duke plus the two nurses that have been there from the very beginning will be at UNC to oversee every step of the challenge. So, with lot's of familiar faces and a big bag of activities, hopefully it will be a fairly easy day (if one can refer to this process as easy). During the day, they'll also draw blood for labs and do some tree nut skin test. She's tested negative to tree nuts in the past on her blood test, but given that she's never consumed raw nuts, she also needs to be skin tested. They'll test for just 2 to 3 tree nut at this visit and do 2 to 3 more at our next visits.
And, what happens after tomorrow? If it's a success, she'll stop the drops, stay on her restricted peanut-free diet, and then head back to UNC for a second food challenge in August. That one will be a repeat of tomorrow except at the end, if she passes, she'll have to consume the equivalent of 2 tablespoons of peanut butter. If tomorrow Abigail doesn't make it past all doses of peanut flour (the equivalent of 16 to 17 peanuts)....well, we'll address that then.
As for today, we're asking for prayers for a safe trip, peace for Abigail during the challenge (she's super nervous) and that God continue blessing this trial, not just for Abigail and our family, but for the many children and families whose lives can be changed as an outcome of this journey.
I'll keep you posted. Thanks for all of your continued support!
Monday, July 9, 2012
Sunday, May 27, 2012
Roller Coaster Ride, a.k.a., Peanut Clinical Trial
It's been quite an emotional roller coaster ride this spring. At our last visit to Duke in January, we discussed the details of Abigail's pending peanut food challenge. At that time, we were all set for this summer. In March, we received an e-mail from our doctor stating that the protocol had changed. They've decided to extend the study from 3 years to 5 years. My heart sank.
Earlier in the year, they selected 10 participants, those that have been in the study for 3 years, and who had passed their original food challenge at the year mark, to do the 3 year challenge. This challenge consists of eating the equivalent of 16 - 17 peanuts. Less than half of those 10 passed the desensitization challenge and were able to go onto the tolerance challenge. The thinking is that SLIT (Sublingual Immunotherapy Treatment) takes longer, much like traditional allergy shots, and the additional 2 years will allow for more changes in the immune system.
At this point in the e-mail, I'm almost in panic mode. We've been saying to Abigail for months now, "You're almost there.", "You can do this.", "It's countdown time." and "You can make it till July." Obviously, we're operating on the thought that she's going to pass her challenge. Now, I'm not so sure, and what I'm going to tell her?
I was relieved to read further in the e-mail that there is a provision in the study protocol that allows for a food challenge sooner than 5 years if the IgE is 15 or less and the skin test is 5mm or less. Whew!!! Those numbers were based on their experience with the peanut flour studies, and the fact that the kids from the SLIT group of 10 who did pass both food challenges had lower IgE numbers. Abigail's number was 7.54, and her skin prick test was almost non-existent. We're back on for July!!
Fast forward to May. I call the now transferred staff at UNC Chapel Hill to see about scheduling her food challenge in July. In talking with the nurse that's been there from day one and more or less coordinates all of the peanut clinical trials, I find out that they are re-thinking the 3 year challenge provision. There goes the heart sink again. She explained that the additional 2 years may mean the difference between being desensitized and being tolerant. Obviously, as disappointed as we may be, we choose the cure over the band-aid. On that call, I did find out that we could skin test for tree nuts, and if the test backs up Abigail's negative blood test results, we could introduce tree nuts. That's a big deal, and helped ease the blow of potentially staying on the SLIT drops for another 2 years. We'd know for sure after the staff met and made a final decision.
I got a call last week. We're back on! Told you it was a roller coaster ride. Here's how it will work. At the 36 month mark which we've actually passed (it was mid-May, but over the years, we've pushed our annual visits to June to get past end-of-school commitments), Abigail will do the desensitization challenge. Looks like this year it'll actually be July due to summer camp and their schedule. On challenge day, she'll consume doses of peanut flour up to the equivalent of 16 to 17 peanuts. If she can finish the challenge, then she's considered desensitized. We go home, and stop the drops for a period of 1 month. In August, we go back for her tolerance challenge which is the same dosages up to 16+ peanuts. If she doesn't tolerate the full amount, they look at the dose where she started showing symptoms and step back one. That amount will be her tolerance level.
We're excited and scared at the same time. I'm praying that she passes both challenges with no issues. Having her be tolerant to peanuts would be so much more than what we were asking for when we started this trial. My hope then was that she could consume products processed in a facility that manufacturers peanuts, and that I would no longer have to worry about accidental exposure. Being in a position where she needs to eat peanuts would be amazing!
Let's hope there are no more changes!
Earlier in the year, they selected 10 participants, those that have been in the study for 3 years, and who had passed their original food challenge at the year mark, to do the 3 year challenge. This challenge consists of eating the equivalent of 16 - 17 peanuts. Less than half of those 10 passed the desensitization challenge and were able to go onto the tolerance challenge. The thinking is that SLIT (Sublingual Immunotherapy Treatment) takes longer, much like traditional allergy shots, and the additional 2 years will allow for more changes in the immune system.
At this point in the e-mail, I'm almost in panic mode. We've been saying to Abigail for months now, "You're almost there.", "You can do this.", "It's countdown time." and "You can make it till July." Obviously, we're operating on the thought that she's going to pass her challenge. Now, I'm not so sure, and what I'm going to tell her?
I was relieved to read further in the e-mail that there is a provision in the study protocol that allows for a food challenge sooner than 5 years if the IgE is 15 or less and the skin test is 5mm or less. Whew!!! Those numbers were based on their experience with the peanut flour studies, and the fact that the kids from the SLIT group of 10 who did pass both food challenges had lower IgE numbers. Abigail's number was 7.54, and her skin prick test was almost non-existent. We're back on for July!!
Fast forward to May. I call the now transferred staff at UNC Chapel Hill to see about scheduling her food challenge in July. In talking with the nurse that's been there from day one and more or less coordinates all of the peanut clinical trials, I find out that they are re-thinking the 3 year challenge provision. There goes the heart sink again. She explained that the additional 2 years may mean the difference between being desensitized and being tolerant. Obviously, as disappointed as we may be, we choose the cure over the band-aid. On that call, I did find out that we could skin test for tree nuts, and if the test backs up Abigail's negative blood test results, we could introduce tree nuts. That's a big deal, and helped ease the blow of potentially staying on the SLIT drops for another 2 years. We'd know for sure after the staff met and made a final decision.
I got a call last week. We're back on! Told you it was a roller coaster ride. Here's how it will work. At the 36 month mark which we've actually passed (it was mid-May, but over the years, we've pushed our annual visits to June to get past end-of-school commitments), Abigail will do the desensitization challenge. Looks like this year it'll actually be July due to summer camp and their schedule. On challenge day, she'll consume doses of peanut flour up to the equivalent of 16 to 17 peanuts. If she can finish the challenge, then she's considered desensitized. We go home, and stop the drops for a period of 1 month. In August, we go back for her tolerance challenge which is the same dosages up to 16+ peanuts. If she doesn't tolerate the full amount, they look at the dose where she started showing symptoms and step back one. That amount will be her tolerance level.
We're excited and scared at the same time. I'm praying that she passes both challenges with no issues. Having her be tolerant to peanuts would be so much more than what we were asking for when we started this trial. My hope then was that she could consume products processed in a facility that manufacturers peanuts, and that I would no longer have to worry about accidental exposure. Being in a position where she needs to eat peanuts would be amazing!
Let's hope there are no more changes!
Wednesday, April 25, 2012
Easter Experiment
Before Easter gets too far behind us, I wanted to write about an Easter experiment that we conducted this year.
In keeping with our dietary habit of avoiding artificial colors because of their link to allergic reactions and ADHD, I decided it would be fun to try to dye our eggs naturally. It's something that I've wanted to do for years. In fact I posted about it way back in 2010, but never made it a reality.
Because we weren't going to have a table full of rainbow colored cups, I tried to still keep it fun for my 9 and 4 1/2 year old by turning it into a science experiment. I had found an article in Natural Awakenings that recommended we add natural ingredients when boiling the eggs. Using their suggested foods/ingredients, we pulled out every pot in the house, added water, the ingredients and vinegar and commenced boiling. Know that saying that a watched pot never boils? Well, it's true.
It's Easter Sunday afternoon, and instead of enjoying a relaxing activity with my family, I find myself slaving over a hot stove...all by myself. Some would call that a failed experiment and stop there. Still needing hard-boiled eggs for breakfast the next morning, and being somewhat curious, I (notice the singular tense) completed the experiment. I could call it a success in that the eggs were cooked, some had color and we weren't promoting the use of artificial colors. Just as easy, I could call it a failure, and for obvious reasons.
In order from left to right, we used frozen blueberries for blue/purple, frozen spinach for green, cherry juice for red, paprika for orange and turmeric for yellow. I'm not giving up though. The yellow eggs were gorgeous, and with the right ingredients and amount, this could be a viable option. The eggs absorbed the nutrients from the spinach, blueberries and cherry juices making that a bonus, and all of the water and ingredients used to boil the eggs got used to water the outside plants. So, maybe not a complete failed experiment.
In keeping with our dietary habit of avoiding artificial colors because of their link to allergic reactions and ADHD, I decided it would be fun to try to dye our eggs naturally. It's something that I've wanted to do for years. In fact I posted about it way back in 2010, but never made it a reality.
Because we weren't going to have a table full of rainbow colored cups, I tried to still keep it fun for my 9 and 4 1/2 year old by turning it into a science experiment. I had found an article in Natural Awakenings that recommended we add natural ingredients when boiling the eggs. Using their suggested foods/ingredients, we pulled out every pot in the house, added water, the ingredients and vinegar and commenced boiling. Know that saying that a watched pot never boils? Well, it's true.
It's Easter Sunday afternoon, and instead of enjoying a relaxing activity with my family, I find myself slaving over a hot stove...all by myself. Some would call that a failed experiment and stop there. Still needing hard-boiled eggs for breakfast the next morning, and being somewhat curious, I (notice the singular tense) completed the experiment. I could call it a success in that the eggs were cooked, some had color and we weren't promoting the use of artificial colors. Just as easy, I could call it a failure, and for obvious reasons.
In order from left to right, we used frozen blueberries for blue/purple, frozen spinach for green, cherry juice for red, paprika for orange and turmeric for yellow. I'm not giving up though. The yellow eggs were gorgeous, and with the right ingredients and amount, this could be a viable option. The eggs absorbed the nutrients from the spinach, blueberries and cherry juices making that a bonus, and all of the water and ingredients used to boil the eggs got used to water the outside plants. So, maybe not a complete failed experiment.
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!!
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!!
Friday, January 13, 2012
I'm still here...promise!
Hope everyone had a great holiday season!
Just wanted to let everyone know that I'm still here and do have plans to post again soon! Please be patient, and don't stop visiting!
By the way, we're heading to Duke again next week for our 6 month visit. No skin prick test this time though. They've changed the protocol to only 1 time per year as opposed to every 6 months. Abigail does have to have blood drawn, but less than usual (another protocol change). I'll definitely be posting about our visit.
Just wanted to let everyone know that I'm still here and do have plans to post again soon! Please be patient, and don't stop visiting!
By the way, we're heading to Duke again next week for our 6 month visit. No skin prick test this time though. They've changed the protocol to only 1 time per year as opposed to every 6 months. Abigail does have to have blood drawn, but less than usual (another protocol change). I'll definitely be posting about our visit.
Wednesday, December 7, 2011
Another successful cake baked!
This last weekend was my husband's birthday. I asked him what type of cake he would like, and he mentioned a German Chocolate cake. My immediate response was no way...pick again. His second choice was a coconut cake. That was a little better.
If you've been following my blog, you know that I'm a "from scratch" baker when it comes to fancy desserts. It's really one of the only ways to bake when you are trying to avoid processed foods and have to cook for a peanut allergy.
After doing some recipe research online, and remembering that I had successfully pulled off the chocolate marble cheesecake he requested last year, I re-considered the German Chocolate cake. Especially since I found this great recipe that started with a boxed German Chocolate cake mix. Yes, I was willing to "cheat" just a little, especially this time of year when I'm on over-load. Well, the problem was, that I couldn't find a German Chocolate cake mix that I was willing to purchase given the list of ingredients. I did find a Dr. Oetker** organic vanilla cake mix, and after comparing the ingredients thought I'd take a chance. I also purchased Baker's German Sweet Chocolate bar (unfortunately, no other organic or peanut risk free option in site) to turn my vanilla cake to chocolate.
I mixed the box mix with the buttermilk, oil & eggs per the recipe I found on Barbara Bakes and then had to figure out how to add the chocolate. The recipe that came with the chocolate instructed to melt the chocolate in the microwave with 1/2 cup of water. No sooner did I do that when I realized that I just added an extra 1/2 cup of liquid to the recipe. Already committed, I poured very thin cake batter into my pans and held my breath as I watched my cake layers in the oven through the glass. The cake layers turned out beautifully, but how would they taste?
I did use pecans in the frosting. Abigail does not have a tree nut allergy, but given the high risk of cross-contamination, the peanut clinical trial guidelines require that tree nuts be removed from the participants diet. My parents have several large pecan trees in their backyard. We've talked to our doctor at Duke, and because there is no risk of cross-contamination, Abigail is allowed to eat pecans from their trees.
Here's how the cake turned out.
And how did it taste? Incredible. It's the most moist chocolate cake I've had in a really long time! Yeah, another successful cake baked! Happy Birthday to my wonderful husband!
**Just a note about the Dr. Oetker cake mix. There was no allergen cautionary label on the box, and I haven't been able to find any information on their website. In hindsight, I shouldn't have allowed Abigail to eat a piece until I knew for certain. It's a Canadian company, and they're usually really good about labeling. I'll contact them and find out.
If you've been following my blog, you know that I'm a "from scratch" baker when it comes to fancy desserts. It's really one of the only ways to bake when you are trying to avoid processed foods and have to cook for a peanut allergy.
After doing some recipe research online, and remembering that I had successfully pulled off the chocolate marble cheesecake he requested last year, I re-considered the German Chocolate cake. Especially since I found this great recipe that started with a boxed German Chocolate cake mix. Yes, I was willing to "cheat" just a little, especially this time of year when I'm on over-load. Well, the problem was, that I couldn't find a German Chocolate cake mix that I was willing to purchase given the list of ingredients. I did find a Dr. Oetker** organic vanilla cake mix, and after comparing the ingredients thought I'd take a chance. I also purchased Baker's German Sweet Chocolate bar (unfortunately, no other organic or peanut risk free option in site) to turn my vanilla cake to chocolate.
I mixed the box mix with the buttermilk, oil & eggs per the recipe I found on Barbara Bakes and then had to figure out how to add the chocolate. The recipe that came with the chocolate instructed to melt the chocolate in the microwave with 1/2 cup of water. No sooner did I do that when I realized that I just added an extra 1/2 cup of liquid to the recipe. Already committed, I poured very thin cake batter into my pans and held my breath as I watched my cake layers in the oven through the glass. The cake layers turned out beautifully, but how would they taste?
I did use pecans in the frosting. Abigail does not have a tree nut allergy, but given the high risk of cross-contamination, the peanut clinical trial guidelines require that tree nuts be removed from the participants diet. My parents have several large pecan trees in their backyard. We've talked to our doctor at Duke, and because there is no risk of cross-contamination, Abigail is allowed to eat pecans from their trees.
Here's how the cake turned out.
And how did it taste? Incredible. It's the most moist chocolate cake I've had in a really long time! Yeah, another successful cake baked! Happy Birthday to my wonderful husband!
**Just a note about the Dr. Oetker cake mix. There was no allergen cautionary label on the box, and I haven't been able to find any information on their website. In hindsight, I shouldn't have allowed Abigail to eat a piece until I knew for certain. It's a Canadian company, and they're usually really good about labeling. I'll contact them and find out.
Saturday, December 3, 2011
Girl Scout Cookie Rally
There are two cookie manufacturers that provide cookies for the Girl Scouts. In our region, it's Little Brownie Bakers. Other areas of the country get cookies from ABC Bakers. Both have excellent allergen labeling policies. If you are concerned about peanut/tree nut ingredients and the risk of cross-contamination, you'll need to know which bakery supplies your cookies and/or double check the labeling on the box. At Little Brownie Bakeries, the Thin Mints, Samoas, Trefoils and the Thank U BerryMuch cookies are safe for peanuts and tree nuts. The Dulce de Leche and the new Savannah Smiles may contain traces of tree nuts, and of course, the Tagalongs and the Do-si-dos are not safe for either. It looks like ABC Bakers has just 3 cookies that are safe which are Thin Mints, Thanks-a-Lot and the Lemonades. That's a bummer! At least the Thin Mints are safe!
It's no secret that I'm not a fan of my daughter selling Girl Scout cookies. However, I do love her being a part of the organization, and we've found a really great Brownie troop in the new area where we live. I was pleased to find out that her new troop is selling cookies to raise money to go on a mother/daughter trip when they're in 5th grade. That gives them 4 years (the other girls started working towards it last year) to raise the money to spend a long weekend in Savannah, the birthplace of Girl Scouts. So, I'll be out there in the cold with Abigail the first of January while she rings doorbells asking if anyone wants to buy Girl Scout cookies. And, I'll even buy a box...or two.
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