I think any mom with a kid with food allergies wants their children to live as "normal" of a life as possible, but we also want our children to be safe. It's hard, therefore, not to draw daily attention to food allergies...especially on grocery day (why does it seem like all of the pictures on boxes of peanut filled granola bars and pecan studded cookies look so much better than the "no nut" ones??). I swear I say more than 5 times a day, "No, sweetie. You can't have that. It might have peanuts in it. It has peanuts in it. or I can't be sure it is safe." It's not normal and it breaks my heart every time I have to deny him some deliciousness. To a 5-year old kid, homemade just isn't the same as something from the store. It loses it's excitement, it's special status.
While visiting family, little brother kept drawing attention to the fact that Perry couldn't have peanuts and everyone else could. He cried, "I just want to be like everyone else! I want to be on the 'peanut team', not the 'no peanut team!'" Ugh! How can a mother keep from sobbing, falling to her knees and shouting "Why??????" at the sky? Thankfully, "mom mode" kicked in and kept me from losing it, but what can you really say? All I could come up with was something like, "Hey, I don't even like peanuts. They're gross! I want to be on the 'no peanut team' with you? Can you be the Capitan?"
Last year, at our annual trip to the allergist, I came across the FAAN Walk for Food Allergy flyer that I had seen the year before but didn't pick up. The walk was scheduled for Perry's 5th birthday and I thought it would be a perfect way for him to see how not alone he was. Boy, was I right!
I think I had tears dropping from my face the 2 hours we were at the walk site. When we first arrived, we checked in and got our t-shirts and ribbons. Mine was green (supporter of food allergies) and Perry's was blue (I have food allergies). As I pinned the ribbon to his shirt, I told him to "look for kids with a blue ribbon, they are just like you! Introduce yourself and ask them what they're allergic to...maybe they'll be allergic to peanuts, too!" He immediately started scanning and it didn't take long for him to discover he definitely was not alone.We made friends with a family and walked with them the entire time. Perry talked to maybe a hundred kids and they shared allergies :-)
If you have a child with food allergies, I strongly suggest you walk the now FARE Walk for Food Allergy (name change this year). It's filled with vendors offering free samples, bouncy houses, and possibilities for friendship. Invite your friends, your kids' friends and maybe your allergist (we saw ours there with her own children). Last year, just Perry and I went but this year, we'll walk as a family in support of our son and our brother.
Go, Team Peanut!
perry
my little allergic peanut
Friday, February 22, 2013
Thursday, February 21, 2013
Set back, hope for the future
Well, the happy tears have dried and reality has set in a little bit. It's so funny how initial excitement can cause you to prematurely accept something and then later you realize the consequences, the implications. Not funny, funny...but funny. A buyer's remorse feeling, I guess.
Most people hopefully searching for OIT come to realize a few things:
1. It can be expensive at a dedicated facility - $5000 is a common figure
2. Facilities and doctors are few and far between.
3. The dosing regimen and open-ended end date make traveling long distances difficult
4. Not everyone thinks OIT should be performed in-office
As I sat with the Mr. Last night, we thought about how this would affect our family...all 5 of us and realized that without a local doctor to do OIT, traveling the 8 hours roundtrip 2 x's per month isn't something we can do right now. Being a stay at home mom of 3 boys means my husband would be taking the day off to watch the other boys at least twice per month, Perry would miss school twice per month and without a definite end to the program in site, this could be our "normal" for 12-24 months.
I called our current allergist today to ask her if she would be willing to start the therapy in their office and she kindly said no, BUT she did say that she believes peanut desensitization will become more commonplace in the next 1 to 2 years. She suggested that, for now, I put my name on as many trial waiting lists as I can in our area...and that I will do. Keep fighting the good fight with a phone and insurance card in my hand!
We did get some weird news today...Perry's latest RAST scores are in...
His peanut score dropped from a 6 to a 3.2!!!!!!!! The doctor said it is still possible he may surprise us and outgrow this allergy! I'm super anxious now to get his uKnow results.
He's ready to food challenge the cashew allergy!!!!!!! Wow!! Exciting! Setting up the appointment for that today.
Weird news: he's developed a hazelnut allergy? Out of left field for sure! I used to give him Nutella all of the time (man, that stuff is gooooood), but switched to a cocoa almond butter a year ago or so. The allergist seems to think it is because I stopped giving him hazelnuts that this happened. She suggested I give him the nuts he is not allergic to somewhat frequently to keep his resistance high. I'd love to hear some opinions/schools of thought on the subject. I know some PN/TN allergic moms are probably shouting "Nooooooooooooooo!" at the screen right now.
Most people hopefully searching for OIT come to realize a few things:
1. It can be expensive at a dedicated facility - $5000 is a common figure
2. Facilities and doctors are few and far between.
3. The dosing regimen and open-ended end date make traveling long distances difficult
4. Not everyone thinks OIT should be performed in-office
As I sat with the Mr. Last night, we thought about how this would affect our family...all 5 of us and realized that without a local doctor to do OIT, traveling the 8 hours roundtrip 2 x's per month isn't something we can do right now. Being a stay at home mom of 3 boys means my husband would be taking the day off to watch the other boys at least twice per month, Perry would miss school twice per month and without a definite end to the program in site, this could be our "normal" for 12-24 months.
I called our current allergist today to ask her if she would be willing to start the therapy in their office and she kindly said no, BUT she did say that she believes peanut desensitization will become more commonplace in the next 1 to 2 years. She suggested that, for now, I put my name on as many trial waiting lists as I can in our area...and that I will do. Keep fighting the good fight with a phone and insurance card in my hand!
We did get some weird news today...Perry's latest RAST scores are in...
His peanut score dropped from a 6 to a 3.2!!!!!!!! The doctor said it is still possible he may surprise us and outgrow this allergy! I'm super anxious now to get his uKnow results.
He's ready to food challenge the cashew allergy!!!!!!! Wow!! Exciting! Setting up the appointment for that today.
Weird news: he's developed a hazelnut allergy? Out of left field for sure! I used to give him Nutella all of the time (man, that stuff is gooooood), but switched to a cocoa almond butter a year ago or so. The allergist seems to think it is because I stopped giving him hazelnuts that this happened. She suggested I give him the nuts he is not allergic to somewhat frequently to keep his resistance high. I'd love to hear some opinions/schools of thought on the subject. I know some PN/TN allergic moms are probably shouting "Nooooooooooooooo!" at the screen right now.
Wednesday, February 20, 2013
happy tears
When we first got the diagnosis of Perry's peanut allergy at 8 months old, I was burdened, sure, but I didn't really comprehend the full impact having a food allergy would have on his life until a year or so later. I guess I really felt burdened...I mean, I can't eat peanut butter anymore? Not even sneak it? What about Chick-fil-A? So many labels to check at the grocery store! Maybe it was a type of coping mechanism or something...maybe experiencing a bit of the five stages of grief as I "let go" of my good friend, PB&J.
After a few months, I finally got the hang of having a child with a peanut allergy: asking for a peanut-free play dates, finding brands with dedicated peanut-free facilities, cleaning tables with wet ones at parks, etc. As I started to cope with the allergy, the gravity of the situation set in. I started thinking of school lunches at peanut covered tables with peanut covered children, sleepovers where a good intentioned mother forgets and puts peanut butter M&M's in the popcorn and a deadly first kiss. My anxiety kicked into overload.
I can't remember where the Mr. and I first heard of peanut desensitization, but we were thrilled to see a chance for Perry to escape from the fear of living with a peanut allergy. The relief for us, to know if someone forgets he has allergies and slips him a Reese Cup, he will still be with us. After a brief google search, I found a center that provides OIT (oral immunotherapy) for peanut allergies, but with a heavy price tag for a family of 5 on one income and rigorous treatment plan, we feared we couldn't do this for him.
As kindergarten approaches this fall, I've been on a manhunt for further testing for Perry. Our allergist mentioned the uKnow Peanut Test and we were thrilled to have this test done for him. It would give us a little more warning, a little more information for teachers, coaches and we'll know, for sure, exactly what type of a reaction he would have if he ingested a peanut. We just completed the test Saturday and are awaiting the results along with his current RAST test (last year, his peanut allergy was a 6 - the highest on the scale).
Falling into a Facebook worm hole (you know, when you're clicking link to link to link and can't remember where you started, I came along No Nuts Moms Group (a supportive and informational environment. So lucky to have found them). To Maddy's story to Peanut Anaphylaxis Cure where I found moms with children undergoing OIT and an open forum for questions, support and friendship. There, I discovered that some doctors were performing OIT as an in-office treatment! This is huge! Not only could we afford, with the help of our insurance, to see if Perry would be a good candidate for this treatment, but maybe there would be a doctor in our area who would provide the treatment!!
After a few hours on the phone, a lot of cheers and tears, I found a doctor 3 hours and 45 min away who will perform the treatment and one more office to call tomorrow (who closes on a Wednesday?). Today is a good day. I called my mom to tell her the good news and the only words that would come out were "These are happy tears."
After a few months, I finally got the hang of having a child with a peanut allergy: asking for a peanut-free play dates, finding brands with dedicated peanut-free facilities, cleaning tables with wet ones at parks, etc. As I started to cope with the allergy, the gravity of the situation set in. I started thinking of school lunches at peanut covered tables with peanut covered children, sleepovers where a good intentioned mother forgets and puts peanut butter M&M's in the popcorn and a deadly first kiss. My anxiety kicked into overload.
I can't remember where the Mr. and I first heard of peanut desensitization, but we were thrilled to see a chance for Perry to escape from the fear of living with a peanut allergy. The relief for us, to know if someone forgets he has allergies and slips him a Reese Cup, he will still be with us. After a brief google search, I found a center that provides OIT (oral immunotherapy) for peanut allergies, but with a heavy price tag for a family of 5 on one income and rigorous treatment plan, we feared we couldn't do this for him.
As kindergarten approaches this fall, I've been on a manhunt for further testing for Perry. Our allergist mentioned the uKnow Peanut Test and we were thrilled to have this test done for him. It would give us a little more warning, a little more information for teachers, coaches and we'll know, for sure, exactly what type of a reaction he would have if he ingested a peanut. We just completed the test Saturday and are awaiting the results along with his current RAST test (last year, his peanut allergy was a 6 - the highest on the scale).
Falling into a Facebook worm hole (you know, when you're clicking link to link to link and can't remember where you started, I came along No Nuts Moms Group (a supportive and informational environment. So lucky to have found them). To Maddy's story to Peanut Anaphylaxis Cure where I found moms with children undergoing OIT and an open forum for questions, support and friendship. There, I discovered that some doctors were performing OIT as an in-office treatment! This is huge! Not only could we afford, with the help of our insurance, to see if Perry would be a good candidate for this treatment, but maybe there would be a doctor in our area who would provide the treatment!!
After a few hours on the phone, a lot of cheers and tears, I found a doctor 3 hours and 45 min away who will perform the treatment and one more office to call tomorrow (who closes on a Wednesday?). Today is a good day. I called my mom to tell her the good news and the only words that would come out were "These are happy tears."
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