Our Peanut-free Journey

Life with a peanut allergic son.

Pennsylvania Epi-Pen Law — June 18, 2011

Pennsylvania Epi-Pen Law

When we visited the allergist last month, she mentioned that Pennsylvania is working on getting a law passed that will allow students to carry their epi-on their person. As of now schools can make the decision for us as to where our children’s epi-pens are stored. While I get that kids in kindergarten, first-grade, maybe even second-grade should not be allowed to carry their epi-pens I believe the children in the upper grades should be allowed. If you are able to do the epi-pen yourself, you should be allowed to carry it. My son is going into 3rd grade next fall. I don’t know if the law will be passed by then or not. If not, he will be fairly far away from the nurse’s office and that makes me very uncomfortable. Up until now he was right down the hall from the office. Granted, this year it was as far down the hall as he could be, but close enough that I felt comfortable with it.

My hope is that even if the law isn’t passed, the new principal (yes, I have to start over with a new principal this year) will call our allergist and find out what this new law entails. If our kids can’t outgrow this allergy then we need to do our best to advocate for their safety.

Holy Huge Wheal — May 25, 2011

Holy Huge Wheal

After 14 months we finally made it back to the allergist. Every time we go I get my hopes up for a good outcome. The last three times we’ve been there his wheal size has gone down. I expected it to be the same today and was hoping for the smallest size yet.

Um, yeah. That didn’t happen. Not even remotely close. His wheal size doubled to 25mm. Yes, 25 mm! That’s huge! At 16 mm they consider that a person will have a reaction 100% of the time to peanut protein. Yeah, he way surpassed that. I’m disappointed, I’m angry, I’m just plain deflated. I never expected this. I don’t know why I never did, I just didn’t.

I asked, again, about desensitization. Our allergist is not sold on it. She doesn’t feel that they have figured out a good way of doing it yet. The steps to even be considered for the trials include a skin test, blood test, and, horrifyingly, an oral challenge to prove you are allergic. I think desensitization is a great gift for the kids it works on. The problem is knowing who it will and will not work on. You just don’t know.

The good news? Peanut allergies are so publicized that more and more people are aware of it and do things they can to prevent kids from getting exposed. Restaurants are using less and less peanut-containing products. Schools are realizing that it isn’t going anywhere and more students are entering school with these allergies. All of this makes life a little easier for kids and families with peanut allergies. For that I am thankful.

Some day I would like to see a remedy for peanut allergy. Until then, we will continue doing what we can to eliminate exposure.

1st Grade done. Wheal results for this year. — July 23, 2010

1st Grade done. Wheal results for this year.

Since I last posted, five months ago!, Alex has finished first grade. Other than the few bumps I previously mentioned it was an uneventful year. Thank goodness.

He also had an allergist appointment during that time. His wheal has gotten smaller (now 12mm) but he is still very allergic to peanuts. I know that every peanut allergy is serious in that we never know when the reaction will be anaphylaxis but Alex’s wheal and spread results indicate that he is 100% guaranteed to have a reaction if exposed to peanut protein. The only unknown is what that reaction will be.

Alex was only diagnosed with a peanut allergy because he ended up with a rash and a very swollen eye when he was 20-months-old. I had given him peanut butter crackers that morning. The third time he was exposed to peanuts. I believe the other two times gave him a small rash as well but nothing else was out of the ordinary.

For the first three years I just got his RAST test done every year. He varied between level 2 and level 3 with the blood test. Then before he started school I felt that he needed to see an actual allergist. His kindergarten year he saw the allergist in December and his wheal was 16mm. He was also diagnosed with cat and dog allergies (which we already knew), a spring tree and some kind of fall weed. I believe there were 23 pricks in all. Thankfully he was not allergic to any other food product including tree nuts.

I have to explain to people sometimes that peanuts are not actually nuts at all. They are legumes like peas etc. The look on their face is usually pretty funny.

So, that’s that. We have 37 days left in our summer vacation. Around day 25 or so I will be meeting with the new teachers and discussing protocol for this coming year. Fingers crossed it goes well!

The Allergist — December 31, 2008

The Allergist

Sounds like a book. Lol.

Our first allergist appointment went well. I was told things I already knew and we also found out some things we were 99% sure we knew and I found out something that made me feel very, I can’t find the right word, I’ll go with deflated.

First, the peanut allergy. When the nurse at the allergist’s office asked if he had any allergies, I said he was allergic to peanuts. She grimaced and said, “oh that’s a big one”, thank you I’m very aware of that. I know I sound snide but I’m well aware of how bad a peanut allergy is. Anyway, the doctor came in and asked about his past reactions and what prompted us to see her today. I told her that we had never seen an allergist and I just wanted to get her opinions on some things. She was very nice and we talked a lot about Alex’s history.

Second, other allergies. Although he was never formally diagnosed with cat, dog, seasonal allergies, we were pretty sure he had them. He can’t go to anyone’s house with a cat or dog without having an allergic reaction and come March, he is one miserable little man. So, you probably know how we find this stuff out. Skin test it is. Alex had 23 tests done on his back. The worst part of this whole thing was not having him touch his back for 15 minutes. He kept saying it itched. It was a loooooong 15 minutes.

Other allergies include cat, dog, grass pollen and lambs quarter. The latter is apparently a fall weed. Who knew. What the allergist found interesting is that he tested negative for tree pollen. So we aren’t sure what is causing his spring allergies. She said it could be a tree they don’t test for. Interesting.

Now for the biggie. The one that has left me deflated. Prior to this appointment, from what I have read, Alex had about a 50-75% chance of reacting to peanuts based on his RAST. However, today his wheal was 15mm and left me with the grave knowledge that he has a 95% chance of reacting to a peanut ingestion. It would be 100% but the allergist said that with a RAST as low as his it puts him in a very grey area.

She did say that she would not say he will never outgrow this. She has some patients where she tells the family point blank that there is no chance they will outgrow it based on wheal size and RAST. Again, Alex is in that grey area based on his own RAST, wheal and past reaction history. She told me it’s not futile to hold onto hope. So that’s what I’m doing. Hoping, praying, wishing.

Allergist Appointment & the Holidays — December 29, 2008

Allergist Appointment & the Holidays

We have our first allergist appointment tomorrow. When I say first, I literally mean first. Even though my son has been allergic to peanuts for four years, we have always relied on our pediatrician and our own investigating for his allergy. However, I felt it was finally time to see an allergist and get her opinion on where we stand. I know she’s not going to be able to tell me if he will outgrow this but I would like to know where the allergists stand on a future “cure”. I’ll post about our experience after the appointment.

On another note, we made it through the holidays reaction-free. However, we did find ourselves in a very unsettling situation on Saturday night. We were at a Christmas party and my aunt made a peanut butter cake forgetting about Alex’s allergy. That’s fine, I made a dessert too, one he could have. As I wandered into the kitchen I noticed a bowl of nuts. Oh goody. I told Alex not to go near the bowl or the counter it was on. I did let him eat the chips that were in the bowl on the other counter. About an hour later I saw my aunt get a handful of nuts and then go and put her hand in the bowl of chips. Needless to say my breath was caught in my throat at this sight. Alex did not get any more chips the rest of the night and I remembered that we are always learning with this allergy.

Moving Forward — July 28, 2008

Moving Forward

Now that the school situation is figured out, we are moving on to bigger and better things for Alex. Up until now we have solely relied on our pediatricians for peanut allergy information. I have decided to take Alex to an actual allergist. We need to figure out what we can do to keep him more safe and to see if there are any trials he can participate in. A lot of trials seem to want candidates who have actually gone through anaphylaxis. Thankfully Alex has not but it also makes him a less likely candidate.

The trials we are most interested in are the ones where the patient ingests small amounts of peanut protein on a daily basis until they are ingesting the equivalent of several (like 13) peanuts. The plan here is not to make the patient no longer allergic to peanuts, it is to avoid the cross contamination issues we face on a daily basis. We wouldn’t have to worry that the chocolate chip cookie he ate was made on the same line as the Nutter Butters or that the ice cream he had wasn’t made in the same machine as a peanut containing ice cream. Anything we can do to make Alex’s world a little safer is what we want to do, as any parent would.

Now, the problem with all of this is that the allergist doesn’t have an appointment until December 30! Literally the end of the year. We’re on a cancellation list but even that is long. We’ll see. Hopefully, fingers crossed we will get in earlier.