It all started 2 years ago right after we moved to Albany. We caused quite a stir when we came here because of Jackson's peanut allergy and the need for the school to be peanut free for him to be safe. In the weeks before we moved I had called the school and talked with them about our situation and they took care of things before we ever set foot in Albany. They were amazing...however, from that point on whenever we would meet anyone new and introduce ourselves they would immediately say, "Oh, you are the ones with the boy with a peanut allergy." Yes...that is us. The family with the boy with a peanut allergy. Also known as the reason why your child can no longer eat a PB&J sandwich at school.
Everyone was very understanding of our situation, but for we hated that we were known that way. You see, for Jackson, it was dangerous for him to simply come in contact with something that someone who had eaten peanuts had touched. He didn't have to eat a peanut to have a life threatening reaction, he just had to touch a door knob, a keyboard, a table etc. that someone who had eaten a peanut had touched for him to be in danger. Most people didn't understand why their kid couldn't eat peanuts as long as Jackson wasn't eating them. It is hard to understand that simply touching something with peanut oil on it can cause a reaction. It was not a fun way to live.
A few months after coming here I was approached by another lady who's young daughter also had a severe peanut allergy. We got to talking and she mentioned that a friend of hers was going through a peanut desensitization program in Dallas. I had never heard of it before. We had always been told that there was nothing they could do for a peanut allergy. He would have it the rest of his life and it would get worse with exposure. I went home and immediately started looking into it. I scheduled an appointment for Jackson later on in the summer...and then I chickened out. This was so new and only being done in a few places across the country and that scared me. We were lucky that there was a place 3 hours away that was doing it, but I just wasn't ready to jump in and do it.
Over the next 2 years it became more obvious how hard this peanut allergy was going to be to deal with as Jackson got older. What about taking him to his first Texas Rangers baseball game? An event that should have been so exciting for him just caused a lot of anxiety because there were peanuts everywhere! Same thing when we took the kids to their first Texas A&M football game. The moment the lady behind us started shelling her peanuts, Jackson clammed up and went into panic mode. It was then that he looked at me and insisted we do the desensitization program that summer.
We had been dealing with his Peanut allergy since he was 1, but something about last year just made us realize that if we could, we needed to do this for him.
I started looking into it again and started calling doctors and reading blogs about the process. There wasn't a ton of information because it is so new but I found some pretty good resources. I booked appointments at 2 locations and decided to meet with both doctors and see which one I felt most at ease with. We finally decided on Southwest Allergy and Asthma in Denton because they just seemed more personal and the protocol was pretty much the same. Once we found out that our insurance would pay for the majority of it we decided to go ahead and have our other son Tyler who suffers from a severe egg allergy go through the program as well.
Tyler's egg allergy didn't have as big of an impact on his daily life. It was a pain to deal with, but if someone ate an egg around him it wasn't going to kill him. Both boys were diagnosed with an egg allergy at the age of 1 through a RAST test and Jackson was also found to be allergic to peanuts. Jackson has outgrown his egg allergy for the most part, but Tyler's has gotten worse over the years and he had started reacting to things that he had previously been OK with. We knew that if we were going to do it for one son we needed to do it for both. I called my friend who's daughter was also allergic to peanuts, (the one who had told me about this treatment) and told her we were going to do it and wanted to know if they wanted to do it with us. They decided to go ahead with it and we got it scheduled to start in June of 2012.
The Oral Desensitization Therapy (ODT) basically tricks your body into tolerating whatever you are allergic to. You will never be cured from your allergy but you will be able to live a pretty normal life. On the first appointment the boys went in and had skin testing and blood work and we got an overview of the program. Once everything was in place we were scheduled for our RUSH procedure.
On the RUSH day the boys received increasing amounts of their foods (via peanut flour and egg flour) every 30 minutes until a maximum dose was reached. The nurse would come in and monitor the boys and take their vital signs every 15 minutes as we continued to increase their dose. We were at the office for about 6-7 hours on their RUSH day.
Once we had completed the RUSH procedure we then began the build up phase. The boys went home with their dose of peanut and egg that we had to give them every morning and every evening. We had to give this to them a minimum of 10 hours and a maximum of 14 hours apart. Ideally right around the 12 hour mark. The boys were put on a daily antihistamine (Zyrtec) and would do their dose twice a day for the week and then we would return to Denton the next week where they would increase the amount of the flour that they were getting and then we would continue on that dose. We had to limit their activity and not get them too excited for 2 hours after they would take their dose. This was pretty easy at night...not so much after their morning dose. We spent a lot of mornings this summer lounging around watching movies. You generally do this for around 16-20 weeks depending on how your child does with their dose during the week. There were some weeks that the boys would have issues and we would just maintain their current dose until their body adjusted to it and tolerated it better. It was a lot of driving. (3 hours there and 3 hours back) It was a lot of time spent in the doctor's office. (2 hours per visit on average). It was a lot of time spent measuring out their flour doses and mixing them up. Especially at the end with Tyler's egg flour. It was just like trying to mix play dough with grape juice and then have him drink it. Very nasty. He took it like a champ.
It has been a LONG process!
I am so thrilled to report that as of Thursday October 25th Tyler has graduated the program. He ate and egg and did great with it. He will now continue to eat an egg twice a day and take Zyrtec for the next 3 weeks. After the 3 weeks are up we will drop the Zyrtec and just eat an egg twice a day for the next week. After that week has passed we will go back to the allergist and repeat his skin and RAST test. He should be good to go and will just have to be on a maintenance dose of 1 egg every day for the rest of his life. (Can you imagine?) If he stops eating his egg he will become sensitive to it again and will be allergic to it again. I hesitate to use the term "allergic again", because the boys will never lose their allergy.
Jackson will always be allergic to peanuts and Tyler will always be allergic to eggs. They are just desensitized to the effects of them.
Thursday was also a big day for Jackson. He ate his first whole peanut! He still has 5 more weeks of buildup left but, HE ATE A PEANUT!!!
With him we are working up to 10 peanuts every day.
It was a very emotional day for me to see him reach into a baggie and touch something that previously would have caused him to have a serious reaction just from touching it. And he ate it!
I cried. He cried. We all got emotional. It was such a relief to see him get past that hurdle. It has opened up a whole new world for him. (and us) The stress of looking at every label, worrying about everything and everyone surrounding us and being the peanut boy just faded away. This is going to work! I just feel it! When Jackson is done with his program he is looking forward to to going to eat at Texas Roadhouse. The doctor said we could take him there once a month, but not to overdo it. He is beyond excited.
Unfortunately our friend's little girl ended up dropping out of the program after the first couple of weeks. She just had a mental block she couldn't get past. She was only 4 at the time. Very young. I don't know that Jackson could have completed the program at her age. Hopefully one day when she is older she will be able to go through it again.
I will update once Jackson has completed the program, but tonight I just wanted to get all of this down. All of the emotion. I am still in awe when I see Jackson open up a can of peanuts and pick one out to eat. His whole life has changed thanks to this program!
Tyler's too...Can you imagine having cake or cookies or pie make you sick? He is very happy and can't wait to have a piece of his Meme's pumpkin pie!
If food allergies are controlling your life I highly recommend you looking into the program.
Here is a link to where we are going:
There are several other helpful links to some of the studies on there as well.
And of course you know I took pictures of it all!
5:45am Headed out to our first appointment for testing and to learn about the program.
Skin testing for Jackson.
All of the boys meds ready to go for the RUSH procedure. We have a lot of Epi Pens everywhere you could imagine as well as a large supply of Benadryl and Zyrtec!
The boys headed out for RUSH!
Jackson after having his very first dose of peanut.
Tyler after his first dose of Egg.
Relaxing in between doses on RUSH day. Their Kindle Fire's saved us that day and have kept them entertained in the car and while we are at the Dr. each week.
A picnic in the procedure room. We couldn't leave the office so we had to eat there.
Jackson relaxing with his daddy. It was a long day.
Measuring out egg flour.
The kids being silly at one of their regular appointments. This was before our friend had to drop out.
The boys as we got near the end of the program.
Measuring out peanut and egg flour. On the weeks when I would have to measure out 2 amounts (like a pinch and a dash of peanut or a tsp. and 1/2 tsp of egg) it would take me about 45 minutes from start to finish to measure out their doses. I made sure we were being really exact and packing it in good.
Egg mixing. It was so nasty and smelled terrible. We would have to mix it with a little warm water to help dissolve it and them mix in grape juice to try to mask the taste. I don't know how Tyler would drink it. He almost never complained until the last week and then he was gagging on it. The peanut smelled wonderful. Like a grape PB&J sandwich!
Working on homework at his appointment. We have had to miss a day of school almost every week since it began. The boys go until 10 and then I pick them up and we head out to Denton for our appointment at 2:00. We usually get home around 7:00.
Playing a little mine craft on his Kindle.
Drinking his egg and grape juice.
That crazy moment when you have to go out and buy things that you previously wouldn't bring into your house! We had the peanut M&M's just in case he couldn't tolerate the regular peanuts. He did great without them. While we are still in the buildup phase they really want him to just eat a peanut with nothing else on it. Once we are on our maintenance dose he can do peanut butter or peanut M&M's.
Jackson holding a peanut in his hand just before eating it.
Not as bad as he thought it was going to be. All done and feeling great! This is the moment where I started crying. He did it!
Tyler ready to eat his scrambled egg.
It tastes good.
Tyler with the female Dr. Foster after eating his egg and graduating the program. We were working with a great husband and wife team.
He got a T-shirt to celebrate his graduation!
(BTW: It bothers me that it should say Got AN egg allergy?)
So happy to be done! So happy that we were able to do this for the boys!
And I'll leave you with these fun facts for Tyler's treatment:
6,132 miles Traveled,120 hours spent driving,
65 hours in dr office,
12 hours spent making and mixing doses,
$1,400 in dr fees & co-pays,
$1,200 spent on gas
Having Tyler thank God in his prayers for finally being able to eat an egg...PRICELESS!
I love how excited he is!
I'll be sure to figure out the same statistics for Jackson's treatment as well!