We just spoke to our team at UNC and our son's IgE level has continued to drop. He started at 8.52 and then it went up to 16 and back down to 8 and then in February, to 4.21. His IgE is now 3.38!
I am very excited to see it continue to drop. Remember that the golden ticket is for it to fall below 2. Once it gets below 2 AND we have been on maintenance for at least a full 12 month period, then we can start the food challenges. We will return in October for more bloodwork and to see how his IgE looks. He also had skin tests in June. Those didn't really look like they were changing much, but they didn't get any worse. They said this is typical and that many will actually still test positive on a skin test even though they are no longer allergic. This is why the food challenge is so important to really know what they can tolerate or not.
Friday, August 24, 2012
Saturday, May 5, 2012
Anniversaries!
We just passed the anniversary of our son's ocular tort eye surgery...last April 20. He is still doing so great and we are blessed. We are coming up on the one year anniversary of our start in the trial for his peanut allergy....May 9.
We also just got the results of his last bloodwork from February. His IgE has dropped to 4.1!!! Yay! We will go back in June for another blood draw and skin tests. So, I will update again after that visit.
We also just got the results of his last bloodwork from February. His IgE has dropped to 4.1!!! Yay! We will go back in June for another blood draw and skin tests. So, I will update again after that visit.
Saturday, March 3, 2012
And off we go....
Our every other week trips to Duke are now complete! Our son hit his maintenance dose on Monday, February 27, so now he won't go back until June! Now we settle into the structure of eating the same dose every week. It is amazing to look at the size of the dose now and compare it to where we started. We started with a tiny dose and now it is probably a tablespoon full or more. If he is on the high dose, that would be 10 peanuts!
In other news, they have started the food challenges for some of the kids in our trial. Three kids saw their IgE drop below 2 and they have been on maintenance for over a year, so they were ready to challenge. The first 3 started in January and all passed the first challenge, which is typical since you have been on the dose there is no reason you wouldn't handle it. Then they have to go a whole month with no dose, no exposure....then they come back for a second challenge. This is the one that counts and shows true clinical "tolerance". All 3 of the kids passed the second challenge with no issues and were able to eat a tablespoon of peanut butter at the end of the day!! Awesome!!
So, our son had his blood drawn again and we will learn the results of that next month. I am anxious to see if his IgE has dropped any further. I was so happy that it dropped to 6 from 16 during the fall. I am hoping to see another point or two shaved off of there! Our goal is under 2, so the closer we get the better.
The AAAAI conference is in Orlando this weekend and they are covering the results from the first trials...interesting stuff. They have learned so much already....still a long way to go, but each day brings new discoveries.
I will check back in again in June after our next appointment. Also in June, we go back to the eye doctor for his 1 year follow-up to his surgery. He is not tilting hardly at all any more and his eyes look great! Yay!
In other news, they have started the food challenges for some of the kids in our trial. Three kids saw their IgE drop below 2 and they have been on maintenance for over a year, so they were ready to challenge. The first 3 started in January and all passed the first challenge, which is typical since you have been on the dose there is no reason you wouldn't handle it. Then they have to go a whole month with no dose, no exposure....then they come back for a second challenge. This is the one that counts and shows true clinical "tolerance". All 3 of the kids passed the second challenge with no issues and were able to eat a tablespoon of peanut butter at the end of the day!! Awesome!!
So, our son had his blood drawn again and we will learn the results of that next month. I am anxious to see if his IgE has dropped any further. I was so happy that it dropped to 6 from 16 during the fall. I am hoping to see another point or two shaved off of there! Our goal is under 2, so the closer we get the better.
The AAAAI conference is in Orlando this weekend and they are covering the results from the first trials...interesting stuff. They have learned so much already....still a long way to go, but each day brings new discoveries.
I will check back in again in June after our next appointment. Also in June, we go back to the eye doctor for his 1 year follow-up to his surgery. He is not tilting hardly at all any more and his eyes look great! Yay!
Sunday, January 8, 2012
Update for the new year!
Whew, this fall has been busy, but good! We had a wonderful holiday season and have really enjoyed wrapping up 2011.
Our son is still doing great on his treatment plan at Duke and we continue to feel so blessed to be able to participate. Dr. Burks and his team are moving to UNC later this year and we will go with him and the whole clinical trial unit. We will finish our updosing before they move, so the only change for us will be going to UNC instead of Duke every 4 months afterward and for our food challenges when we get there. Anyway, he is doing great and has had no issues with any of his doses thus far.
We have gotten good news on his IgE levels too. His initial IgE was 8.52 on day 1 at Duke. In August, his IgE was 16. It is the pattern of everyone on the treatment...the IgE goes up initially, then begins to drop. So, we had another blood draw on November 28 and we just got the results......6.21!!! Wow, I am so excited to see it drop below where we started already! I didn't expect to see that until after we hit maintenance. Woo hoo! So, we have 4 more visits before maintenance. Once we hit maintenance, we will only go back every 4 months for bloodwork and to get our next set of doses. We will head home with a huge bag of doses....4 months worth then! That will be a big difference from our little 2 week bags!
In other news, our hearts and prayers go out to the family in Chesterfield, VA who lost their little girl this week to a peanut allergy reaction. So tragic. I can only pray that the work we are doing at Duke will help other children someday and help to keep them safe!
Our son is still doing great on his treatment plan at Duke and we continue to feel so blessed to be able to participate. Dr. Burks and his team are moving to UNC later this year and we will go with him and the whole clinical trial unit. We will finish our updosing before they move, so the only change for us will be going to UNC instead of Duke every 4 months afterward and for our food challenges when we get there. Anyway, he is doing great and has had no issues with any of his doses thus far.
We have gotten good news on his IgE levels too. His initial IgE was 8.52 on day 1 at Duke. In August, his IgE was 16. It is the pattern of everyone on the treatment...the IgE goes up initially, then begins to drop. So, we had another blood draw on November 28 and we just got the results......6.21!!! Wow, I am so excited to see it drop below where we started already! I didn't expect to see that until after we hit maintenance. Woo hoo! So, we have 4 more visits before maintenance. Once we hit maintenance, we will only go back every 4 months for bloodwork and to get our next set of doses. We will head home with a huge bag of doses....4 months worth then! That will be a big difference from our little 2 week bags!
In other news, our hearts and prayers go out to the family in Chesterfield, VA who lost their little girl this week to a peanut allergy reaction. So tragic. I can only pray that the work we are doing at Duke will help other children someday and help to keep them safe!
Friday, November 4, 2011
Halloween and beyond
Well, October was a long month...very long! We made it to Duke 3 times. Everything went really well with the updosing and we are still on track with his doses. He hasn't had any issues with any of his doses so far, so we are very happy with that.
We had some excitement at the start of December when I hit a deer on the interstate on my way home from Duke. My son was in the car with me and thankfully, we were not hurt, but our car was totaled. Boo! So, that was a lot of time and effort getting a new vehicle and just dealing with all that stuff.
Then we had a wedding to attend where our daughter was a flower girl. It was very nice, but a lot of work for all involved. She had a great time though and it was all worth it.
The best part of the month was getting to meet another boy at Duke who has FINISHED the trial and is completely allergy-free! I almost started crying talking to him! He doesn't like peanut butter on a sandwich, but he does love it with chocolate! So, he eats whatever he wants now, whenever he wants. His mother said she couldn't even describe what it was like to now go into any restaurant without worry or pick up any food without reading the label! Wow! This young man was in the first trial and is now in 7th grade, so he started at a later age than my son and it took him a while. They are hoping to show that if they get the kids at an early age like my son, that they will take to the treatment faster and their bodies will respond faster. Thus far, it seems to be holding true...there are kids in our study ready to food challenge after just 2 years in the trial.
Then, the last time we were there, we met a young girl who was doing her first food challenge...she was doing great and they all expected her to pass with no issue. Then she comes back a month later to do another challenge and if all goes well, she is DONE! Her family is already planning a peanut-filled holiday season!! We were chatting about all the restaurants they want to go to and things she wants to try. :)
I don't think people realize how much food allergies affect not just the child, but the whole family. It was so nice to see these families conquer this and make their child's world a MUCH safer place! Of course, as parents, we still worry about everything, but not having to worry about food is a very big deal!
So, all is well and we are moving right along...now, if we can just avoid the deer from now on! :)
We had some excitement at the start of December when I hit a deer on the interstate on my way home from Duke. My son was in the car with me and thankfully, we were not hurt, but our car was totaled. Boo! So, that was a lot of time and effort getting a new vehicle and just dealing with all that stuff.
Then we had a wedding to attend where our daughter was a flower girl. It was very nice, but a lot of work for all involved. She had a great time though and it was all worth it.
The best part of the month was getting to meet another boy at Duke who has FINISHED the trial and is completely allergy-free! I almost started crying talking to him! He doesn't like peanut butter on a sandwich, but he does love it with chocolate! So, he eats whatever he wants now, whenever he wants. His mother said she couldn't even describe what it was like to now go into any restaurant without worry or pick up any food without reading the label! Wow! This young man was in the first trial and is now in 7th grade, so he started at a later age than my son and it took him a while. They are hoping to show that if they get the kids at an early age like my son, that they will take to the treatment faster and their bodies will respond faster. Thus far, it seems to be holding true...there are kids in our study ready to food challenge after just 2 years in the trial.
Then, the last time we were there, we met a young girl who was doing her first food challenge...she was doing great and they all expected her to pass with no issue. Then she comes back a month later to do another challenge and if all goes well, she is DONE! Her family is already planning a peanut-filled holiday season!! We were chatting about all the restaurants they want to go to and things she wants to try. :)
I don't think people realize how much food allergies affect not just the child, but the whole family. It was so nice to see these families conquer this and make their child's world a MUCH safer place! Of course, as parents, we still worry about everything, but not having to worry about food is a very big deal!
So, all is well and we are moving right along...now, if we can just avoid the deer from now on! :)
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