Thursday

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.

 
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