Time for me to slip in a Food Allergy mom blog post. With this week being the official Food Allergy Awareness Week… I figured why not now?
To me… Sabrina’s story really makes the point so well. You could need tissues if you visit her story. It’s a hard one.
Here’s another great video I just had an email about. If I Had an Allergic Reaction. Well done.
Teen site recently launched that has great info: Why Risk It.
In case you are are somewhat new to the blog I’ll give you the back-story of why food allergy awareness is so important to me.
My youngest child, Tommy has food allergies to peanuts and most tree nuts. He was a “failure to thrive” baby and was continually ill with pneumonia and ’stomach bugs’. He always managed to have ‘bug bites’ on him when no one else got them. (I was horrified to look back and realize the child had been getting hives since he was a few months old.) I suspected food allergies just before his third birthday and was convinced we had found the problem finally. But testing came up all negative. The patronizing allergist informed me, “It is all in your mind.” Right… please insert nasty word of your choice with regards to this doctor.
Friday, August 26th, 2005. Tommy was ‘helping’ me clean as I was packing plastic totes and such in preparation for Hurricane Katrina. (We live near the coast so hurricanes mean we need to prepare for a few days without power, etc etc etc) We stopped for a snack. He wanted a cookie, but spotted my ‘gween nuts’ (pistachios) I was munching on and he asked for a few. Without a thought I handed him three of the shelled nuts. (Remember all allergy testing was negative and he was 3, over the age the APA suggests to introduce nuts.) He informed me they were ’spicy’ as he munched them up… I started to laugh… and I handed him a tissues for his nose that was suddenly running like crazy.
And then all hell broke loose.
Remember the scene from Exorcist where she does the green pea soup bit and screams? Yeh, picture that… but worse: loss of bowels, hives coming up so fast they all ran together. They were literally over every inch of his body. He looked like a lumpy boiled lobster. His lips swelled up. His right eye nearly swelled shut. He was coughing and clawing at his tongue. He screamed… a lot. And when he could talk he sounded very hoarse. Eventually, in a very weak voice, he just begged to go to sleep.
This was all in less than five minutes.
A few weeks later testing now showed that Tommy was allergic to many tree nuts. Interestingly, peanuts were still negative on the skin test. We chose to pull them none-the-less. Guess what finally happened when we read every label and cut out ALL tn/pn? Tommy started gaining weight. Sleeping well. His ‘reflux’ went away. Hi mystery diarrhea that had plagued him for years… gone. Totally gone.
If we had pushed harder about food allergies earlier, or tried to figure it out on our own, well, then we could have saved the poor kid from countless tests, hours and hours at different specialists all scratching their heads. I think Food Allergy education is important for the parents… as well as the health professionals. WHY did no one say, ‘Hmmmm, let’s look at allergies’? Instead we looked for cystic fibrosis, metabolic disorders, malabsorption disorders, silent reflux… we missed the simplest answer looking for more complicated issues.
So THIS is why I’m such a big advocate of Food Allergy Awareness. To me keeping Tommy safe is all about education…not in demanding everyone in his life give up their favorite nutty snacks. (Though please wash your hands after eating mixed nuts, okay?!)
I have decided my scrapbook pages are like self therapy in a way. I was determined to share Tommy’s story and have a page published. Scrapbook Trends picked up this layout pretty quickly. (Thanks again to the talented Kim Hill for taking that pistachio picture. No way in heck I could do it!)
I know many of you will read about possible treatments in the works for food allergies. And I do love hearing about them. (I get sent info about ‘the newest study’ a few times each week.) But you have to realize I’m not going to pin all my hope on potential treatment 10 years down the line. Don’t be surprised if I don’t rise up and call you blessed for your email. I appreciate it. And a treatment would be amazing. But it won’t help us now. Tommy needs to learn to live in the real world, right now.
I say it all the time: it’s a fine line between teaching him how to cope and not raising a kid terrified of food. I think we’re getting there. He wears his epipen and a medic alert bracelet at all times. He knows not to accept food we can’t read label on. He’s still learning. We all are.
Please don’t let Tommy’s allergy scare you. I’ve had parents tell me they prefer not to have playdates with my boy because his allergy is ‘too much to handle.’ I appreciate the honesty… but it hurts my kid to hear that! Instead of telling him, ‘I might accidentally kill you’ (yes, someone has said this) how about ‘Let me talk to your mom and we’ll figure out where we can meet to play?’ Don’t avoid him for fear. Don’t define him as ‘that kid with the epipen.’ He’s just Tommy, with some safety precautions on board.
Don’t ever try to force him to eat something. You may think it’s safe. Sure it’s ‘just’ a sugar cookie. But the sugar cookie may have been next to a pistachio studded morsel of death in the case. The label may even say it’s safe. (Bakeries are NOT required by law to say ‘may contain’ etc.) But we are teaching him to stand his ground on food consumption. If you offer a food and he declines it… let it go. Please. He’s not going to waste away to nothing for skipping one food item, I promise.
I still have hopes of getting him the allergen detection dog.
Yes, I’m back on that kick again. I’m not sure why it’s been on my mind so much leading up to this week. Probably a combination of Glory getting older (the kids have started with ‘what happens when Glory dies? What do we do with her body?’) and thoughts of ‘our next dog’ combined with Tommy getting older and having more and more independence these days.
The funny thing is when I first heard of these dogs, even as a mother of child with a history of anaphylactic reactions, I thought it was totally ‘overboard’. I’m not sure why. But I did. And now I can only see the benefits. The amazing benefits.
Like I said in a previous post… Tommy’s allergy is covered under ADA and his dog would be a fully vested service dog with all the rights and privileges to access public areas. This dog would take away so many ‘what ifs’ for him as he grew older. Unsure about a food? The dog takes a quick sniff and will alert him if it is not safe. I mean… really? How cool is THAT?! As a tween he can go places without me hovering. He’ll learn how to handle the allergy on his own, but have an amazing tool by his side with the dog.
For example: once at the bookstore he sat on the floor for storytime. Within a minute he had crawled up in my lap and was clawing at his leg and stomach. A quick peek confirmed he had hives spreading… fast. Since no other symptoms were happening, a dose of Benadryl helped stop the hives. (Though only for a few hours.) We later figured out there were cookie crumbs on the floor and he sat on them, and his body began to freak out over those tiny traces of nuts in the crumbs. If he had his dog, a quick search of the room would have told us where to avoid sitting. And we could have skipped a trip to the allergist and steroids (yet again).
I’ve found another group called Angel Service Dogs that place these dogs as well. Same cost as the original Kennel I had found for the Peanut Detector Dogs: $10k. (Ouch… but again, totally understand the cost once I talked to a trainer about all that goes into getting these dogs ready.)
I’ve had a few people in Tommy’s life comment recently that they’d really like to help contribute towards the dog if possible. Once we get settled in the new place I’ll go talk to our bank and set up a donation fund for the dog. The kids have talked about ways to get the money for the dog for quite a while now. So I think it would really do them some good to see a fund in place and goals being met.
I’ve spoken with the group in Texas again recently. The ranch is actually just north of Austin. I could travel daily for the handler classes instead of having to foot the additional costs of having the trainer come to our house. (That could save up to $2500 training expenses on TOP of the cost of the dog.) YAY!
In a few months time (when things finally settle down to normal… ha!) look for a ‘Tommy’s Peanut Dog’ page to be added to the blog. In the meantime, check out that Angel Service Dogs link. It’s fun to see the little girl interact with her ‘peanut dog’ as Tommy calls them.
And you may now consider yourself more food allergy aware.
Pat yourself on the head. 
Actually, more on that shortly.
