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! 

Day 3 - OIT Peanut Clinical Trial

So, today was day 3 and while it was the end to a stressful three days, it is only the beginning for us.  :)  Today, we went in to the clinic and they did his vitals - blood pressure, temperature, height/weight, listened to heart and lungs and checked him out from head to toe.  They also asked about any changes and how he did last night.  Then, we mixed up his starting dose with some applesauce and fed it to him.  He had some breakfast already and then he ate more while we were there.  They have found that it is best not to give them the dose on an empty stomach...they do better when it comes at the end of a meal or when the stomach is already working on digesting some other stuff.  Interesting!  Anyway, he ate his dose and then we played and talked and waited.  We have to wait for two hours after his dose to make sure that he is okay and not reacting in any way.  So, we use that time to chat and play and just hang out.  It is actually not bad at all!  They are super nice and from now on, there will usually be another kid or more in the same area with us, so it is nice to meet other families and have the kids play.

Oh, I did want to say that I am going to keep it fairly general on here. I will not be listing the exact doses or specifics about the protocols used in the study.  We didn't sign any kind of confidentiality agreement or anything like that...I just feel strongly that the study is not approved for treatment and I don't want anyone to think that they can attempt to do this on their own or convince their allergist to attempt it!  The study is very deliberate, but also very individualized.  For example, if my son had reacted yesterday to the second dose, then he would have started at the first dose size...there is no one size fits all here.  They are very concerned with safety and that comes before anything in the study and the research.  So, anyway, that is why you won't ever read any numbers or specifics on here.  However, I do want to share the general process so that anyone else who is considering enrolling in a trial has an idea of what to expect.  :)

So, after two hours of playing, they checked him out again and all was well.  We made our next appointment, they gave me his bag of little plastic containers with each dose measured and labeled and we were on our way.  Oh, the other thing we got today was a medical action plan - when to do what as far as Epi and Benadryl.  It pretty much is the same as what we have now...for anything where two systems are involved or that looks severe - use the Epi!  Then follow up with Benadryl and call 911.  If it is just a little redness or something very mild, Benadryl should be fine, but again, monitor and use the Epi.  As I discussed with our local allergist, they said the same...the EpiPen will save a life....don't be afraid to use it!

Now we are back home and tomorrow we will start our first day of home dosing....

Day 2 - OIT Peanut Clinical Trial

Day two began at 8 am again.  This one seemed like a breeze!  We came in and did vitals, then got our first dose in applesauce.  It was such a tiny amount after yesterday!!  The goal for today was to get him to the first dose level.  The total dose for today was SO much smaller than what we did yesterday, so no one expected him to even blink at these doses...and he didn't.  He went through just fine.  We did the next dose every 30 minutes until he made it to the maximum dose for the day and then we waited 2 hours to make sure there was no reaction.  So, that is where we will start out our dosing.  Tomorrow we will go in for our first official dose.  Over the course of the next 10 - 12 months, we will go back every two weeks to get a new dose.  They will do bloodwork every 3 months or so and skin tests once a year.  After we reach the maximum dose, then we get to do the maintenance dose until his peanut IgE drops below 2...then we food challenge again!  If he passes the food challenge, then we go a month with nothing...no dose, no exposure...then we food challenge again.  If he passes that, then we "open challenge"...which means he eats something made with peanuts....like a cookie or something.  That is a ways away and in the meantime, he will get a daily dose of peanut.  It sounds crazy, but it seems to be working for a number of kids and adults to help them lose their allergies.
So...more to come...much more!  :)

Day 1 - OIT Peanut Clinical Trial

Whew...what a day!  Our son finished his first day as part of an Oral Immunotherapy clinical trial for peanut allergy.  The goal of the trial is to number one, achieve a level of desensitization so that an accidental exposure won't cause a reaction, and number two, to see if the treatment can help him achieve tolerance, which is basically the same thing as losing his allergy completely!  So, we began!

We started at 8 am and did the normal stuff...height, weight, history and then skin test.  They test different concentrations of peanut along with some other allergens (like weeds, grasses, trees, cats, pecans, dust mites).  They don't know of any connections with those in particular, but just want to see if there is any significant correlation to the peanut allergy for any of those.  He, of course, tested positive for peanut, but not all of the concentrations, just the higher ones.  He didn't test positive for any of the other allergens they tested.  That was good news!

Then we did the IV and blood draw.  They had put numbing cream on him earlier, so the stick didn't hurt him, but he sure didn't like being held down!  Once he had the IV in, he was fine.  They use an IV on this day just in case he needs fluids during the reaction.

So, then we moved to the scary part!  This was the part I had been dreading.  In earlier studies, the skin and blood tests and a history of a reaction was sufficient to enroll in the trials.  Well, they were criticized for this and people said things like "oh, those kids probably weren't even allergic to begin with".  So, they had to include a food challenge on the first day of the future trials...so there we were.  We sat in a room with a bunch of EpiPen Jrs and two doctors/nurses at all times.  I was nervous, but never afraid.  They were truly wonderful and I had no fear that they would push my son or do anything to harm him.  Anyway, he had some peanut on an animal cracker...and we waited.  Nothing.  More peanut in applesauce...nothing.  They documented everything all the way.  More peanut...more nothing.  So, then...my 17 month old fell asleep!  So, after the 30 minute waiting period between doses, we woke him up and decided to increase more frequently to try to get his body to respond.  So, we gave him that dose in some applesauce and within a few minutes...a little runny nose....cheeks turned a little red....lips started to look blotchy and swollen...then in the same minute, he started scratching at his nose and chin.....REACTION!  They were so on top of it.  I mean, I was going...umm...maybe...yeah, a little swollen...uhh....and they were like, nope, that is a reaction, that is all we need to see!  So, they gave him Benadryl immediately (which was already measured in a syringe and ready to go).  Then we waited.  They kept us there for another 3 hours just to observe him and make sure he was okay.  He played for a bit, then fell asleep again and woke up and played some more.  He was just fine!  In total, he consumed 296 mg of peanut flour.  One peanut is equivalent to 300 mg.  So, he had almost a whole peanut before he had a reaction.
So, they took out the IV and sent us on our way for the day.  During the course of the day they just talked to us a lot about allergies and the studies and just life in general!  It was wonderful to hear all about the studies and research and just to chat with people who are in the thick of it!
I was SO impressed with the clinic and all the wonderful people there...it was really a pleasant day considering!  So, now we move on......