Going down...

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. 

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.

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! 

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! 

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!  :) 

Moving right along....following the trends!

So, another successful day at Duke this week and we moved up to our next dose. We are almost at the point in the dose where the two options split...one group will get a "high" dose and the other a "low" dose of peanut.  We won't know which group we will be in until after the trial is complete.  We do know that at minimum, he will get at least 1 peanut a day and at maximum 10 peanuts a day.  Either way, the treatment seems to be working, so we are happy to participate and help them determine the most effective dose with the best safety record! 
As I mentioned, my son had his blood drawn back in August and we got the results this week.  His IgE at the start of the trial in May was 8.52.  His current IgE is 16.  Now, that sounds like a bad thing, but it isn't.  In all the participants, the IgE goes up at first...doubling or even tripling.  Then....it starts to go down, down, down.  :)  So, the good news is that our son is responding to the treatment and his body is changing its immune response.  They also look at a bunch of other immune indicators that I can't remember the names of, but this one is the one that matters to me.  Once his IgE is below 2 and he has been on maintenance for at least a year, then we can food challenge!  So...hopefully we will start to see his IgE drop at our next blood draw 2 months from now (we do that every 3 months). 
In other news, he has gained weight and grown taller at pretty much every appointment!  :)  He is now 21 months old and I can't believe I will soon have a 2 year old boy!  :) 

Rain, rain go away....

We had a rainy trip to Duke today, but another successful one.  We are now well into our routine and things are going well.  My biggest concern is just keeping him healthy so that he doesn't miss any more doses!  I hate when the kids are sick...it is no fun for them and I just want them healthy as soon as possible...I feel so bad for them!  They are pretty good about it though.  So, when we got home today, our daughter was running a fever and feeling a little tired and yucky.  So, here we go again!  My goal is to keep him away as much as possible!

Anyway, we have another dose and start another two week process.  :)  Onward and upward!

You give me fever....

Well, we had to miss our first doses this week!  Because of his fever, we missed the Tuesday and Wednesday doses.  Boo!  However, his fever broke today, so we were able to get back on track today.  If we missed 3 doses, then we would have to head back to Duke to be monitored for his next dose.  So, luckily, his body kicked the infection or whatever was going on and he was fine today.  I was a little nervous doing the dose again, but he took it just fine and had no symptoms!  Yay...back on track! 

Fever...yuck!

Well, we made it to Duke yesterday and he was kind of warm, but not registering a temperature when we got  there for our visit, so we went ahead with his next dose and then got him ready for his blood draw.  After about an hour, he started to warm up and we checked his temperature again and it was 99.8.  Ugh.  Under the protocol, he is not to have a dose when he has a fever.  So, we kept a close eye on him.  He was just sleepy and tired, but no other symptoms.  He had no issues with that dose of peanut though, so that was a blessing.  They were able to draw his blood without too much issue and then they gave him some Tylenol so that he would be more comfy for the ride home. 
We came home and he was playing, but still feverish off and on the rest of the evening. 
Today, he was still feverish this morning, so I gave him some Motrin and took him in to the doctor to have his ears checked...they looked clear, so likely it is just a virus running through him.  He continued to be fevered this afternoon, so no peanut flour dose today.  He can skip two days of doses without issue, but if we miss three days, then we would go back to Duke to give him that dose and have him monitored to make sure he is still fine with it.   I am hoping that we just miss today's dose though.  He is doing well now and is playing and eating normally, so I hope it gets out of his system tonight. 
In other news, there are three kids in our trial whose IgE levels have dropped below 2 and they have been on maintenance over a year.....so, they are ready to food challenge!!!  They will start in October.  I am so excited and I cannot wait to hear how they do!!
Anyway, here's hoping that we kick this virus asap and can get back on our schedule!  :)

3 months already!

Wow...we just got back from our biweekly trip and I can't believe it has been 3 months already!  We started on May 9 and here it is August 9 already!  My son is doing great with his doses and luckily, he has been able to take all of them and we haven't had to miss any.  Typically, you only miss a dose is the child has a fever or a significant illness.  I am hoping that we can avoid all of that as much as we can! 
At our last visit, we had a chance to meet some other families and that is always fun.  I love to hear about their experiences and how their kids are doing.  One little boy that is in the same study as us is on his maintenance dose and his numbers have dropped below 2 already...so he will likely be food challenging this fall!  That is so awesome and so encouraging!  She also said that he hadn't had any reactions with any of his doses throughout the whole program...so, that is what we are aiming for!  :)  We also met another boy who is older and is in a different trial, but still on oral immunotherapy for peanut.  He has been on the maintenance dose for probably 6 months or so and then out of the blue, he had a reaction.  Well, not out of the blue actually....he has asthma and it seems that asthma kids seem to have more issues with the treatment (although that is just my own observation, not scientific).  Anyway, he has asthma and then on top of that he had his dose and then went on to participate in a particularly intense athletic class which was soon after his dose.  We are supposed to not have them participate in anything strenuous after a dose.  So, at the end of his class, he started having asthma symptoms and that is what they thought it was, then hives showed up...not asthma...peanut!  So, that was a gentle reminder to us all that we have to follow the protocol and not ever take for granted even if they have been great with no issues!  However, this kid is still doing great and his IgE has dropped significantly since he started...so his dad said that this was merely a blip and that they were going to keep on keeping on! 

So, we are still doing great and they are still seeing great results for kids in both the OIT and SLIT trials!  We still feel very blessed to participate and every other parent I talk to has said the same. 

Another trip, another dose

We are moving right along on our updosing schedule.  Thus far, our son has has no reactions to any of his doses and he seems to be tolerating them with no issue.  We follow the protocol exactly and make sure that we do as we are told!  He is supposed to eat a full meal prior to his dose and to not do any "strenuous" exercise after his dose.  Now, he is 19 months old, so he is able to run around and play and be a normal toddler, but we won't be taking him outside to run any races or do anything super strenuous for the two hours after his dose.  During the week, he gets it in the evenings after dinner, so we are settling down anyway.  So, our biggest challenge is just getting  home from work and getting his dinner on the table as quickly as possible.  We are to monitor him for two hours, so that puts us in a time crunch in the evenings since he goes to bed before 8:00 pm.  So, I rush home with the kids, get their dinner ready and then give him his dose after he eats.  On the weekends, we have more options, but I normally try to get his dose done right after his breakfast, so then we relax for a bit and then are up and about for the day.  That seems to work out really well.  Oh, and it is okay to give him his dose at different times each day.  It isn't a medication, it is just an "exposure".  :) 

Also, I found out that some of the kids in his study who started 2 years ago are ready for their food challenge!  Their IgE has dropped below 2 and they have been tolerating their maintenance dose for over a year.  So, they will start their food challenges in September.  They are ready to challenge now, but it is such a labor intensive process that Duke simply doesn't have the staff to handle the food challenges.  It is an all day process and requires one or two people to be in the room the entire time, so they have to schedule them way out.  I hope to have good news to share this fall about those first kids.  :) 

One more down!

We have been on treatment for over 2 months now!  My how time flies!  I feel like I have learned so much and I am very happy with everything and our efforts.  My son is doing great...his environmental allergies are under control, his peanut allergy is being treated and he is doing great on the treatment and he no longer has any real tilt, so his eye surgery was a success!  I feel like this is the "healthiest" he has been since he was born!  Although we are still dealing with the allergies, the treatments are working and he is doing so great!  We are truly blessed!  We had another updose of peanut this week and all is well!  We go back again on the 25th!

Still going strong

We are now up another dose and doing well!  My son is handling the treatment with no issues so far and we are so grateful and blessed!  He has also been suffering all spring from congestion and obvious pollen allergies or some kind of environmental allergies.  So, after talking with the Duke team and our local allergist, we started him on first Zyrtec to see if that would help him...we tried it for about a month and it did help, but didn't clear things up completely.  So, we started him on Nasonex nasal spray.  Within 3 days, his congestion cleared completely and hasn't been back!  Oh gosh, I wish we had started it earlier...he is so much more comfortable...all day and all night. His sleep has been great and he is just in better spirits all day since he isn't sneezing and wiping his drippy nose all day.  So, we just do one squirt a day in each side of his nose and that does the trick!  We still do the Zyrtec too just to keep the histamine in his system to help with the other symptoms, but the Nasonex seems to really do well for him, so I am happy to have it and he takes it like a champ.  :) 
So, in our little allergy corner of the world, all is well right now!  We will head back to Duke next Monday for another dose increase and then later this month, I think they will do bloodwork again...has it really been 3 months already since we started?  I don't pay attention to the calendar much with his doses, we just do it each day and when the bag of doses starts looking low, then I know it is time to head back again soon!  I really like that feeling because it means we are making progress!  :) 
I also really like going to Duke!  It sounds silly, but the drive is simple and boring...just like I like it.  It is long, but not unbearable.  Then it is nice to chat with the other parents and hear their stories and to see how the others kids and other trials are doing.  It is also nice to discuss my son with the doctors and nurses and just discuss allergy research in general.  All-in-all, not a bad way to spend a day and I leave knowing that my son is in good hands there! 

Another day, another dose

We just got back from our next updose appointment.  Everything went well.  He did fine with the next dose and no reaction or issues!  Yay!  We also got his bloodwork back - his IgE was 8.52...can't wait to see it go down!!!

6 week post-op eye appointment

It has been six weeks since our son had his strabismus surgery on his left eye to correct his 4th Cranial Nerve Palsy.  We saw our doctor on Tuesday and it went so well I keep pinching myself to make sure I am not dreaming! 
His doctor checked out his eyes and measured the alignment and declared, "Man, I am good".  We agreed!  The surgeon did a wonderful job and the issue has been fixed.  My son no longer has to tilt his head to keep from seeing double!  He stopped tilting pretty much within 24 hours of his surgery and hasn't reverted at all.  Now, sometimes he does still tilt, but we have noticed that it is when he is tired or looking at something in his lap and we believe that it is merely muscle memory/habit rather than a need to do it because he can stay midline in the same position. 
So, thank God for our wonderful doctor and for getting us over this hurdle!  Now our son can proceed with his head straight and eyes aligned...much easier to get through life if you don't start out tilted!  ;)

First updose trip!

Today we traveled to Duke for our first "regular" visit.  We moved up to the next dose and will spend the next two weeks with that size dose.  Today, they took his height, weight, blood pressure and listened to his heart and lungs, then we fed him his dose for the day and the waiting game began!  He is monitored for two hours after ingesting the peanut protein to make sure he is able to handle that dose.  He was fine today...at one point they thought they heard a little rattle in the chest, but it was nothing and was probably just some general congestion from the cold he has had.  So, he did just fine and we headed home with our next bag of doses!  We will go back in two weeks for our next visit.
Today was fun in that we got to visit with other families who are doing the different trials.  One girl is on the same schedule as our son.  It will be neat to see them both progress together.  It was also nice to see some of the older kids and we saw one family heading home with their maintenance dose of peanut and they won't return until the fall!  I can't wait to get him to the maintenance dose.  If all goes well, we will hit that in 10 months.  If a child has any issues, sometimes they will drop them back a dose or two (or more) to let their bodies figure it out and catch up again.  So, again, it is very individualized and focused on that kid or adult.
So, it was an exhausting day, but a good one!

Cooking plans update

Well, what is that saying about the best laid plans?   I am trying to get us all to eat healthier, but life keeps sneaking up on me!  The work involved in eating healthy in comparison to not is an issue and making it hard for me to get it together!  I just need to do it though!  I need to get a routine and some basic things in place for sure.  My issue is that we get home from work and I need to get food on a plate for my son almost immediately when we get home.  I don't have an hour or even 30 minutes to prepare a meal for him.  I have to get him fed so that I can get his peanut dose to him and have a full 2 hours to monitor him before he goes to bed. 
So, that is my new goal....getting things prepped and ready so that I can quickly get it on a plate for him.  I tried freezing the chicken nuggets I made on Sunday....they were fantastic on Sunday, but when I prepared them after freezing, they were dried out and yucky. 
So, I am just going to have to compromise on a few things.  I am going to look for some organic convenience foods that I can feel better about serving him.  I do manage to get fruit or veggies on his plate too, so I feel better about that. 
Any recommendations on some healthy, organic foods that are easy to get on a plate and safe for a 17 month old to eat? 

Cooking plans for the week....

I have been reading a book, The Unhealthy Truth, and am going to amp up my removal of processed foods from our diet.  So, this week, we will get back into cooking some more.  This week though, I have to get some things cooked today that I can pull out easily to feed our son during the week.  It is tough getting his dinner in as soon as we get home so that he can get his dose of peanut flour prior to bedtime.  I have to have things that I can fix in minutes.  So, rather than buy fake chicken nuggets with who knows what in them and flourescent mac and cheese, I am going to make some today and freeze them into single servings that I can easily reheat for him. 

The other goal for today is to get things ready for the week for dinners for the rest of us!  I went to the local farmers market yesterday and it was wonderful!  I bought some broccoli, onions, potatoes, ground beef, lettuce and asparagus.  So, the goal will be to use all of that this week and head back again on Saturday for more!  :) 

So, today I am making mac and cheese, chicken nuggets, chicken egg noodle casserole, and anything else I can think up!  :)

In it for the long haul....

I did want to take a moment to talk about how our life is going to change by participating in this trial.  For right now, the only change will be that every day, our son will have a dose after he eats his dinner and we will monitor him for 2 hours afterwards.  Then every two weeks for 10-12 months, we will go back to the clinic for the next dose.  Other than that, nothing changes.  Our house is still peanut-free....we are still to remain vigilant about making sure he does not have peanut in any form or via cross-contamination.  This will be the same throughout the whole trial.  So, even though they see desensitization pretty early in the trials, that doesn't change anything about how we operate and how he eats.  Also...this is a long trial.  OIT is not something that you can complete in a month or two.  We will spend 10 - 12 months working on building up to his maintenance dose...then we spend at least a year, if not longer, on the maintenance dose.  During that time, we only have to go in every 3 or 4 months to do testing/bloodwork.  Once his IgE level hits less than 2 and he has been on maintenance for at least a year, then we can do the food challenge.  However, there is no exact date...every kid is different and their IgE numbers respond in the same general trend, but they don't all reach below 2 at the same time.  So, we are in this for the long haul...this isn't a magic bullet that you just swallow and you are cured.  We have to work hard for this and I can tell you that every minute we spend doing this will be worth if he is able to be safer than he is today!  If we are also able to contribute to the research and they are able to get the treatment out to other kids, then it will be worth it!

This is our first home dose of peanut flour.  As you can see, it isn't much.  Another parent described it as like looking at tiny grains of sand in the bottom of the cup.
Sad to know that some people would experience anaphylaxis from this small amount.  This is the same dose that we got on Wednesday at the clinic.
Every two weeks or so, we will return for the next dose.  They will give him the dose there and then monitor him for two hours to make sure everything is okay with the dose and that he is able to tolerate it well enough to move on to that dose.
The things we have to pay attention to are to make sure that he has something in his stomach prior to his dose...kids seem more likely to have a reaction if they take it on an empty stomach.  We also have to make sure he is not sick...if he has a fever or is "sick" in any way, then we don't dose.  It is okay for him to skip a dose or two and they would rather that we skip the dose than risk him reacting.  It seems as though when the body is busy fighting off something else, that it is more likely to react to the allergen.  So, it is better to skip it and let the body do its thing with the virus or whatever and then get back to the immunotherapy in a day or so.  If the fever or whatever lingers, then we would head back to them to give him the next dose just to make sure he is okay and that all is well.  The third thing we have to keep in mind is exercise after the dose...now, with a 17 month old, this isn't exactly a big deal, but for older kids and adults, they recommend not engaging in serious exercise after a dose (like running or aerobics or swimming).  Normal 17 month old activity is just fine though!  :) 
So, as you can see, they have learned a lot about the treatment already and we are able to benefit from all that they have learned from the other adults and kids in the earlier studies.  The safety record of the trials is really good and safety is always priority number one!  I wouldn't have it any other way of course!