Another Peanut Allergy Bites the Dust

What a glorious day this has been! Our OIT journey has been nothing short of amazing and today all of our hard work and persistent prayers paid off because today our son completed the OIT program for peanut. (And yes, I'm in a state of blissful happiness!!)

This journey took us just under a year to complete, but it was worth it, worth it, worth it! As anything in life, it had its ups and downs but it is such a glorious feeling to be done.

Now What?

Not the Update I Wanted to Give

A little under a year ago, I first told you about our son starting Oral Immunotherapy (OIT) for his severe peanut allergy. Along the way, I promised to give you updates to let you know how the program worked out for us. I haven't given one in a long time just because of time, but we're at the stage where I feel it's only fair to give full disclosure to any who may be considering OIT for their child's allergy.

Before I go any further though, I just want to say, I would do it all over again in a heartbeat.

Our OIT Journey: A Bump in the Road

While I would rather only talk about the good in our journey with OIT, I did promise to tell you about the bumps in the road as well so that anyone who might be considering OIT can make an informed decision.

That being said, we have kind of hit a temporary stand still right now in dosing.

About 3-4 weeks ago, our son up dosed to two peanuts on a Tuesday. I was thrilled with his progress and couldn't believe how far we had made it. He did fine with the dose at the doctor's that morning and fine the next morning at home. I even remember standing there that Wednesday night in complete awe that my severely allergic son was holding two peanuts in his hand. TWO PEANUTS. To me, that was incredible. However, dosing at two peanuts was short lived because the dose that evening did not go well.

Just after dosing, he bolted towards his baby brother to get something from him. (Remember, they are not to get their heart rate elevated a half hour before dosing and for two hours after dosing). He immediately started screaming and crying saying he had a "canker sore" on his lip. I knew that couldn't be right so asked him if he bumped his lip on the table to which he firmly replied "no" he hadn't.

I started to get scared inside because I knew something wasn't right and figured it was due to the dosing he'd had just a minute or two before.

Of course, I was home alone when it happened and I was praying about what to do and praying that God would help him.

I then remembered to get Benadryl and that the doctor's office had given me a detailed sheet about what to do should a reaction occur, as well as dosing information for an antihistamine.

Once I gave him the Benadryl, I called the doctor (he actually gives us his cell phone number in case there is an emergency. It's such a relief not to have to go through a call center first!) and it was at that time I noticed a "blister" the size of the tip of my pinky finger on the inside of my son's mouth. The doctor informed me that it was a hive (I never knew you could get them inside your mouth!)

Once the Benadryl was in his system he began to calm down and I encouraged him to drink more water. The doctor then told me to have him to go 1 1/2 peanuts for dosing the next morning. He also said to monitor him for an hour and no exercising for 4 hours rather than the typical two. (Not that you'd have to tell me to monitor him. I wasn't letting this kid out of my sight!) I said okay and hung up.

About an hour later I called the doctor back and told him I couldn't do 1 1/2 and could we please go back to one. He said that was fine and if it helped me not to stress, then to do it.

After talking it over with my husband, we decided we would go ahead and try 1 1/2 the following morning, but I agreed to only if my husband went in to work later so I wasn't home alone with all the kids should a reaction occur again.

The next morning when our son woke up, he was sneezing a lot and had a lot of drainage. I should have known at that point to only give him 1 peanut in case he was getting sick but I thought maybe it was just allergies. (I now know that allergies can affect dosing, as can sickness. There are protocols for dosing during an illness. We have one of those under our belt now too.)

About 1/2 hour after dosing with 1 1/2 peanuts he started coughing a lot and crying and saying he needed to go to the doctor. I knew something wasn't right again but it wasn't as serious as the night before so I held off on the Benadryl and instead gave him more applesauce. (Applesauce is supposed to help the body digest peanut protein better). I also gave him a cough drop just in case it was allergies causing the coughing, but either way, he loved having the cough drop so it stopped the crying. I certainly didn't need him reacting from crying! (It happens.)

So, all that to say, we went back down to one peanut for another week.

Then, we were finally able to up dose to 1 1/2 peanuts (typically you go from 1-2 but his body obviously wasn't ready).

And that is where we have been for a couple of weeks now due to some slight reactions (tongue hurting or itching after dosing). Yesterday, his tongue did not hurt or itch after both doses so maybe, just maybe we can go on Tuesday to increase to 2 peanuts?? We will see! He needs 4 solid days of no symptoms from dosing before we can increase.

OIT is challenging at times and while I did have thoughts this past week of whether or not this was the right thing, I know in my heart it is. It's just hard as a Mom to put your kid through tough stuff even when you know that's what's best for them.

There will be rough patches in this journey, but in the end, it will give our son protection from having a terrible reaction and possibly dying from peanuts. And I have to remember, OIT is a journey, not a race (as much as I'd like to speed past that finish line).

In case you would like to read other families' stories about their journey with OIT and peanut allergy, here are their blogs. Some of the families behind these blogs see the same doctor we do.

• Maddy's Seven Year Itch
• Grits, grins and gripes
• Livvie Lunges Into Life
• Parrot Seeds

 

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Oral Immunotherapy Success Update: He ate a peanut!

After 3 months of weekly doctor's visits for updosing and twice daily dosing at home, our 4 year old son finally ate his first peanut today. I am SO proud of him!

He has done fantastic through this process. We are so thankful to the Lord for His help and for leading us to a great doctor who can help our son become desensitized to peanuts (and eventually his other tree nut allergies as well).

It was such a beautiful day today watching our son pop that peanut in his mouth without any fear or anxiety. He even thought it tasted good! ;)

We have a long ways to go before he graduates from OIT, but he has come so far. To think that the child who couldn't even be at the same table with peanuts has now eaten one is such a milestone.

That very first day at OIT he started off at 1.025 micrograms of peanut protein. Today he ate 205 milligrams.

This week our dosing takes on a different look! We bought a scale that measures milligrams so each dose will be accurate and dosing will be with peanuts now since we have moved past peanut flour.

Here are some pictures of our day. Thank you for your prayers.

 

Before dosing, he always gets his heart rate checked.

 

And then he gets his blood pressure and temperature taken

 

His very first peanut!

(I have to say "Thank you, Lord!" I'm in complete amazement about this!)

 

 

 

He has never seen a real peanut before today. He wanted to see what they look like before he ate one. :)

 

 

Eating it without care in the world!

 

 

Chewing it up and tasting a real peanut for the first time.

 

 

He gave us the thumbs up for approval!

 

 

Caleb and his fabulous, caring Doctor. 

The kids occupying themselves for an hour while we wait to make sure Caleb tolerates the dose. (Which he did!) This is something we have to do each week.

Please keep in mind, he has worked his way up to a whole peanut in calculated doses. This is not something we would ever do at home and only under the care of an experienced physician with a fantastic history with previous patients. So thankful that the Lord led us to just such a doctor!


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An OIT Milestone

 

Our son and his OIT Doctor

 

Gratitude, gratitude, gratitude. That pretty much sums up my experience with OIT at Dr. M.'s office.

Today was a milestone for our son in the OIT process because he started on peanut flour today. Imagine, the boy who would break out in hives from breathing peanut dust is now eating peanut flour.

Now you know why gratitude is on my heart.

And not just because of how well he is doing, but because God led us to an amazing doctor and staff. I came away today thinking, wow, they are so caring here and think of everything.

Dr. M. makes a point to interact not just with his patients, but with any other siblings that happen to make their way to his office. He also takes the time to answer the numerous questions parents have about OIT protocol.

It's no wonder one family drives 5 hours one way to come, or another family flies in bi-weekly from Tennessee, or another drives 6 hours round trip weekly to complete these appointments.

Can I just tell you how grateful I am that after several years of praying for our son to be healed of his peanut allergy, we now only travel 40 minutes to see the best doctor and staff?

I just love everyone there! The receptionist is nice and efficient, Nurse Letty is so kind and compassionate and is always checking on everyone who is waiting out their hour and when Dr. M. can, he comes in to chat and see how everyone is doing. Even the residents that are training under him take the time to interact with my children and talk with them. Dr. M.'s office is the best place to be for OIT!


Here's our day at the office:

 

Getting his vitals taken before the next up dose 

 

He is ready for peanut flour, folks!

 

 

Eating his applesauce before dosing (applesauce helps the peanut protein digest in a more patient friendly manner) :)

This week's daily dose: One capsule (50 mg of peanut flour)

 

This cracks me up. He is not one bit timid about moving up in this process! Bring it on Nurse Letty!

Our dosing for the week

The bottle on the far right is our dosing for this week. The 25 mg bottle is in case he gets sick this week and we have to cut his dose in half and the one on the far left is if we can't make the appointment for some reason and is our back up bottle.

Dr. M. personally fills all of these capsules at home so that peanut flour is not all over his office. That would be a problem for sure! The bottles on the far left are returned next week if we don't need them and are marked with a tamper evident tape. (See, they think of everything!)

I am so thankful for God's grace and provision through this process!

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Learning That Mild Reactions Are Common in Up Dosing

We were able to up dose yesterday in spite of the fact that Caleb seems to be fighting off an infection of some sort. He is acting fine (although slightly more emotional) but has a couple large swollen lymph nodes about the size of medium grapes in his neck and behind his ear.

They don't seem to be bothering him for the most part, but I wasn't sure if we could up dose on our normal day. Thankfully, no other symptoms showed up so we headed to the doctor Tuesday morning.

He is currently taking 2 ml of 1025 micrograms twice daily. I also realized last week that all along he had been having mild reactions to initial dosing. I finally realized that his watery eyes within an hour or so of dosing was his body responding to the peanut protein.

I did not give him Benadryl any of these times (mostly because I didn't realize the correlation at first!). I mentioned it to his doctor and he said that it is typical to have mild reactions such as watery eyes, bright red cheeks or bright red ears the first 1-3 days of up dosing. So, now we know!

I am so thankful for the opportunity to pursue Oral Immunotherapy for our son. I know the journey may not be easy, but we feel it will be worth it when he passes his peanut challenge Lord-willing! Thank you to all who are praying for him as he works through this program.

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OIT Update

For any of you following along on our OIT journey, we had another up dose this morning. Everything went great! Our son moved up to the next level of dosing solution which means we are now on Solution D.

The above picture is what the solution comes in each week.  (The label got a bit messed up from our recent road trip.) I hung on to this bottle until today even though it was for two doses ago. I like to keep a back up on hand just in case our precious bottle were to get spilled or broken. But since we moved to the next level today and got a new bottle, I'm happy to say this one is ready to be tossed into the recycle bin!

Starting tomorrow, our son will take 1025 micrograms of peanut protein twice a day. (On up dose days we have to skip the evening dose because we need to stick to the 12 hour apart rule and the one hour before bed time rule.) We're getting there; slowly but surely! :)

The very first dose is 1.025 mcg and to graduate from the program you need to pass the 24 peanut challenge in the office. As you can see, we'll be visiting the allergy doctor for quite a while. :)

At our appointment this morning, it was nice to meet another mom and her little boy. Her son is almost exactly the same age as our son and also just started OIT in April, so we are at about the same stage right now. The moms in my Facebook group have been a tremendous encouragement to me simply by reading their success stories.

It's amazing to meet different moms and hear how far they will travel to see our doctor for their child. I have talked with a mom who flies in bi-weekly from out of state and have met two other moms that drive a little over 2 hours round trip and another who drives 6 hours round trip!

OIT is a commitment not only in time and travel, but you need to stick with the three main rules. They are completely reasonable and are necessary to follow. You must stick to the correct dosing time, you are not to elevate your heart rate for 2 hours after dosing and you cannot sleep for one hour after dosing.

I find all of these doable, especially considering what our end goal is.

To think that our son will not have to worry about cross-contamination, and will actually be able to eat peanuts and peanut products is incredible to me. Lord-willing, we'll be at that stage in 7 months or so!

God's peace has been incredible through this process. The morning of our first all day appointment I woke up without any fear at all and was actually excited about the process. That is huge for me because it is easy for me to have fear and anxiety, but God's grace and the prayers of others carried me through that day.

One tired boy! He fell asleep on our ride home after his first all day dosing

Usually the night before, or the morning of our next up dose, I feel a little fear creep in wondering whether or not he'll be able to handle the up dose and if this will be when we start to see more symptoms of his body struggling to adjust.

But I know that God is with us and that we have the best doctor available. I'm still in shock that he is relatively close to us and that we don't have to drive for hours on end to see him (or fly out of state!).

I hope that sharing our journey with OIT will help give you the courage to pursue it if necessary.

Want to learn more about our journey with OIT? Here's the beginning of the story.

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A Quick OIT Update

Thank you to all who prayed for our son's OIT appointment yesterday. He did great on the next up dose! This was the dose he did not pass last week at our initial appointment, but after a week of dosing at 205 micrograms, his body was ready to take on 410 micrograms.

Because dosing needs to be as close to 12 hours apart as possible, we were told to skip his evening dose and start up on our regular schedule this morning. I gave him his new dose at 7:30 this morning after first giving him a small bowl of applesauce. Applesauce (or even apples) help peanut protein, especially, to digest and it's important to never dose on an empty stomach.

We are thankful for the progress we are making and are hopeful that we will continue on this trend.

As long as our son is tolerating his doses we can go weekly for up dosing. These appointments aren't nearly as long as that first all day one. For these, he up doses upon arrival and then he is monitored for an hour. If all is well, we can go home. If he shows a reaction, then we can go home after an hour, but will have to continue for awhile longer on the previous level.

Our first level last week went great and it didn't interrupt our lives at all (minus our little guy having to be calm for 2 hours after dosing.) It is very important that you follow the "no exercise" rule for 2 hours after dosing to avoid complications. We had already scheduled a trip to the Creation Museum and our doctor put me at ease about the trip by saying it should be uneventful. And it was! The trip itself was lots of fun, but I'm happy to say we didn't have any excitement with peanut dosing! We were even able to dose in the car on the ride home.

Lord-willing I will have a positive update next week. Regardless of how things go, I plan to update as often as possible so you will have an accurate account of OIT. Thanks for your prayers!

Be sure to read my first post about Oral Immunotherapy to get the full scoop!

Thanks so much for visiting Purposeful Homemaking. I'd love for you to stay connected through the following social medias such as Facebook, Twitter, Google+ and Pinterest. Don't forget to sign up for emails on my right sidebar so you don't miss anything!

Using Oral Immunotherapy to "Cure" Our Son's Peanut Allergy

Last week we started Oral Immunotherapy for our son's peanut allergy and I thought it might be helpful to another mom who might be out there Googling "how to cure my child's peanut allergy" if I shared our experience with you.

Here's Our Story

When our little boy was two, we found out that he did indeed have a peanut allergy. I had suspected for awhile that he may have and because of that, had never let him have peanut.

After a reaction to almonds and almond butter, I scheduled an appointment with the allergy doctor where it was confirmed that he was also allergic to peanuts (as well as a few other foods).

His first reaction to peanuts was when he was 9 months old and accidentally touched his cousin's peanut butter and jelly sandwich. Thankfully his reaction was mild and he only broke out in hives around his mouth. We were on a family vacation with my husband's family and were out in the middle of nowhere so looking back, I thank God for protecting our son.

His second reaction was at a wedding when he ate a cracker. We had just had him tested for peanut and almond allergy and I was nervous to let him eat anything and unfortunately settled on a cracker. Bad choice on my part. He was in his booster seat when he started making an odd coughing sound and started panicking. This immediately alarmed me. I got him out of his seat and away from the crowd and then he started getting hives around his mouth.

I had that sick feeling in my stomach that somehow, of all the things I could have chosen, I picked the one that had peanut in it. My husband went down to the kitchen and found out the cracker had peanut oil. I felt horrible. I learned then that I had better be careful about giving foods to our son if I had not read the label.

The third reaction was last Easter when we went to my husband's grandma's house. There were peanut M&M's on the table where we were sitting and, while I felt nervous, I didn't want to overreact and make a big deal about them being there. I figured that since he wasn't touching them or eating them, he would be fine. And yet, within 15 minutes he broke out in hives. I quickly got the peanut M&M's out of the room and after about 20 minutes the hives went away.

As you can see, as hard as I have tried, our son has still had 3 reactions in public and has never even actually eaten a peanut.

Why We Chose Oral Immunotherapy

We have had two allergy doctors tell us that our son is highly allergic to peanuts and that it is quite likely he will react severely if he ever ingests peanut. (Not exactly what any mother wants to hear is it?)

Because of that, we were recently informed to carry, not one, but two epi pens with us at all times because chances are good he will need a second injection for a reaction. (Just thinking about those scary big needles being jammed into my son's thigh is enough to make me feel weak kneed. I am not nurse material in case you were wondering.)

I have to admit, prior to this, I wasn't the most vigilant mother about possible peanut exposure. Sure, I stayed away from the obvious, but prior to his last two appointments I kept hoping and praying he would outgrow the allergy and I really wasn't stressed about accidental exposure at potlucks and birthday parties.

It is definitely a concern now. His recent allergy tests (prick test and blood work) show us that he is allergic to one of the two more severe peanut proteins. There are actually several peanut proteins that can cause problems, but he is allergic to only one of the them.

Of course, ever since we found out that he was allergic to peanuts (as well as a few other allergens) I began praying for his healing. Nothing is too hard for the God who created the universe out of nothing and I don't believe peanut allergy is beyond His scope.

However, sometimes God chooses to heal by directing our paths to solutions rather than outright healing. I'm not sure why, but I'm guessing that maybe He has people He wants us to impact.

How We Discovered OIT

We have known about Oral Immunotherapy for probably well over a year now. However, as far as we knew, there were no doctors in our area that did this and it seemed impossible to fly weekly to the one doctor we knew of who was out of state.

But then one day, God providentially had my sister share an article about OIT on Facebook. I "happened" to read the article and at the very end noticed that it was about a family who saw a doctor about 45 minutes away from us.

I was still slightly skeptical and, of course, nervous, but I did mention it to my husband. Probably a month went by before I talked to my husband about it again and he said he thought we should call and at least look into it.

I gave them a call and booked our first appointment. I also joined a Facebook group comprised of people who either currently see our doctor or are considering OIT. That group has been instrumental in giving me the courage to pursue this and reading their success stories is inspirational to say the least.


How It Works

Oral Immunotherapy is a gradual oral exposure to an allergen. In this case, peanuts. (We'll tackle his other nut allergy after this.) The doses are calculated and thankfully, others have gone before us so we're not the guinea pigs here. (Thank you every other mother who has gone before us. Bless your heart for paving the way for us!)

Initial dosing and subsequent up dosing is always done in a doctor's office. Daily doses are given at home. Our amazing and incredible doctor also happens to be a pediatrician which feels like a bonus to me.

Our first day could have taken up to 8 hours. Unfortunately, our son only made it 5 1/2 hours before he had his first reaction. It was mild, but showed up within minutes of the last up dose. His doctor doesn't believe in pushing past mild signs because, obviously, it's not worth it to have a serious reaction.

On our first day, our son made it through several levels before I noticed a red spot next to his mouth after the last up dose and realized it was a hive. His doctor said we were done dosing for the day and then continued to monitor him for an hour after that.

Prior to the hive, our son received a dose of peanut flour in a liquid form every 15 minutes. His first dose was 1.025 micrograms. Each dose was given two times, 15 minutes apart. If he did not react at all, he could proceed to the next dose. He reacted when he got to 410 micrograms so we were sent home with our own bottle of peanut protein already in a liquid form with dosing at 205 micrograms.

I give him a 2 ml dose of 205 micrograms of peanut protein twice a day, twelve hours apart. We need to stick as closely to this time frame as possible as it is "the sweet spot." However, we do have a 3 hour window either side of the 12 hours if necessary.

After each dosing, our son is not to let his heart rate increase for 2 hours afterwards so as to avoid any serious reactions such as anaphylaxis. The second dose of the day is to be given one hour before bedtime so that he can be monitored for reactions.

I know that might sound like a lot to deal with, but most of this is temporary and if it frees our son from his peanut allergy it is definitely worth it. In fact, we were out of town for 3 days just after starting treatment and it wasn't a big deal at all to stay on track with his dosing.

If our son tolerates his dosing at home, we can go weekly for up dosing. If he is having reactions to the current level, the doctor will either lower his dose, or he we will continue on the current dosing for longer and try again in a week or so.

Our doctor keeps reminding us, this is a journey, not a race. Everyone responds differently and because of that, we don't have an end date in view. Since our son didn't get as far as we would have liked him to on that first day, he will have 4-5 weeks added on to the entire treatment. If I had to guess, I'd say we're talking around 7 months of weekly visits to the doctor's to increase dosing.

In order to graduate from OIT, our son will need to pass a peanut challenge which involves eating 24 peanuts in one sitting. This is incredible to me that other children are able to do this, and oh how I pray that will be our son one day! It is beyond me to even comprehend that he will be able to do that, Lord-willing.

Of course, it is a long process getting to that point, but it can be done.

If you're considering Oral Immunotherapy (OIT) you may have a lot of questions. I know I did, so here are some that I had. I hope they will help you make a decision to see if this is right for your child.

FAQ

My child has a severe allergy. Is he a candidate for OIT?

Yes, our son has even had an airborne reaction to peanuts and that was my concern too. If he can't even sit by peanuts, how on earth can he ingest even the tiniest microgram? People with a severe allergy are the best candidates for this program because their allergy is life threatening.

How old does my child need to be?

They can be younger than 4, but our doctor prefers they be at least 4 or 5 so they can communicate to you regarding any symptoms they may be having. Our son is 4 1/2.

What is the Success Rate of OIT?

The national average is 85% and our doctor has a personal success rate of 92%.

After OIT will my child just be safe from cross contamination or will my child actually be able to eat peanuts?

Once a child has passed the peanut challenge they can eat peanuts as much as they would like to.

Which protocol does your doctor use?

Our doctor uses Dr. Wasserman, MD, PhD's protocol. Dr. Wasserman has treated patients with OIT for over 5 years and over 100 patients. 

Is someone truly cured of peanut allergy?

Technically, no, but they are desensitized and can eat as many peanuts as they want once they graduate from the program. It will still be necessary to carry an epi pen.

How long will daily maintenance doses need to be taken?

At this point, daily maintenance is life long. However, after several months of completing the program, dosing can go down to once a day instead of twice a day. 

Here is a helpful video that shows you the start to finish of OIT treating peanut allergy. 




Obviously, we're not at the end of this immunotherapy journey and I'm praying that peanut allergy will be a thing of the past when this is all said and done, but that's still a walk of faith for us.

However, pursuing this is much more hopeful than the last allergy doctor I went to who never even mentioned this option. I left with a script for epi pens and the fear put in my heart that I had better be very careful what I let my son not only eat, but get near. That is a tall order, especially when you would love for your child to live without the fear of accidentally eating something lethal (or at the very least, landing him an unpleasant trip in the ER).

So, we are beginning this journey with Oral Immunotherapy. My goal is to blog about our experience with it in order to help and encourage other moms. I would love for you to follow along with us. The prayers of friends and family have been so encouraging and God's grace has been evidenced thus far.

Thanks so much for visiting Purposeful Homemaking. I'd love for you to stay connected through the following social medias such as Facebook, Twitter, Google+ and Pinterest. Don't forget to sign up for emails on my right sidebar so you don't miss anything!