New Adventures in Food Allergies — sorta

So…

To my utter shock astonishment and dismay Tori tested positive for egg whites, egg yolks, wheat, dairy, and peanut. Quite high. Obviously she doesn’t have Tommy type allergies. But ENT suggested we pull all of the above from her diet and then in six weeks we’ll reintroduce one at a time. She’ll be able to learn what’s giving her the most problems.

I’m trying to stick mostly with grilled meats/fish/chicken and fresh veggies and fruit but portable food is a bit harder than I realized.

Her dad took her to Publix last night and they found a great large selection of safe foods she can have for now.

Yay!

In Office Food Challenge: Pistachio Take TWO (subtitle: Oh, the things we do for our kids.)

Since last week’s pistachio challenge resulted in… well… Tommy throwing up his guts on the side of the road (so sorry, hope you weren’t eating while reading!) we had to trial pistachios once again today.

Dr. D said we were doing three short samples this time.

All seemed a go …

Tommy had a light breakfast in his stomach.

Tommy had a game to play on Dad’s iPod Touch.

Tim and I both had coffee.

Ready set… do not go.

????????

We all did not count on Tommy deciding that pistachios were the WORST tasting food in the entire world.

Worse than canned spinach.

Worse than tuna straight from the can.

Worse than my *gasp* chicken cacciatore… he hates that stuff! I love that recipe… why he hates it I don’t know… sigh. Oh, yeh, pistachios. Sorry.

HE HATED THEM.

We tried sweet talking him. Begging him. I even started being a bit mean and counting to three. (That did work for two nuts.) The nurses brought suckers. He’d eat a nut, slam some water, and suck on his sucker. He got to 6 and refused to eat more for a while. Doctor D said not good enough.

When Tommy said, yet again, that they were the worst tasting thing in the world… I lost my mind. I offered something I never offered anyone. EVER. I always knew I would willingly take a bullet for my children. But I never knew I’d do something like this.

I told my child if he would calm down and finish the last 8 pistachios…

Then I would

gulp

eat a Brussel Sprout.

(Pardon me for a second, I just gagged a little bit more.)

And to my HORROR… sigh… this bribe ended up working.

Let’s back up here.

My mom liked to give us Brussel Sprouts when we were kids. I don’t know why. They don’t eat them now. I have a suspicion it was ‘all the rage’ back then to force the horrid little things on your kids. No real reason other than to watch them squirm in absolute misery.

I hated the wee little vile cabbages. They smelled like desert camel crack and tasted worse. (Fine, I’ve never actually had the joy of tasting the aforementioned desert camel crack, but I have a vivid imagination!) So, being a ‘crafty’ child, I took matters into my own hands. I would stash them in assorted places. Seat cushions. Unsuspecting family poodles. Or… say… the centerpiece on the table.

Seemed like a good solution. Mom wasn’t fussing. And I wasn’t gagging. And I still grew just FINE thank you veggie police!

Fast forward to when I was about 22. I was over at my parent’s house looking at the centerpiece on the table realizing it was the exact same one from my childhood….

And a horrible thought entered my head: “They weren’t still there… were they? No. They couldn’t be! Uh, yeh. They were.”

I tried to quietly put it back down, but I was laughing too hard. And now, my hatred of Brussel Sprouts has entered family lore.

I HATE THEM.

Okay back to challenge.

My bribe… worked.  (FRAGNABIT!)

Combined with cheering, suckers, water, and the promise of making mom eat something she HATED… he got through it.

He ate every disgusting pistachio.

(And promptly had three suckers to shove in his mouth.)

After the last set of vitals were checked and no barfing ensued… Dr D came in and made a production of having Tommy hand over his epi-belt he has worn all this time. And even had me take off his MedAlert bracelet. (Which has been my mommy security blanket all this time.)

Notice in this pic it’s off… he’s holding it. He wore one 24/7 since he was 4 years old. Yes, my eye was twitching… or tearing up. I forget which.

And then…

We left.

Such a crazy crazy bittersweet feeling. I won’t lie. I’ve tried to be very straight-forward and no-nonsense about this all these years. But I don’t think I truly grasped until today the weight that was on all of us. I accepted his allergy for what it was… and just tried to move us all forward.

I thought I would feel like dancing and screaming with joy. Instead… I feel like having a good long jagged snotty bawling my brains out cry.
Who knew?

_____________________

Tommy on the other hand only ONE thing on his mind.

Making Mom keep her promise.

_______________________

We went to the store where he gleefully helped locate them.

We cooked them up.

Yes, they still smell like something nasty. WAY NASTY.

But a promise is a promise…. so I ate the dreaded Brussel Sprout for my brave non-pistachio loving kid.

And you know what?

I still hate them.

PS Tommy wants you ALL to know that pistachios are still the grossest thing in the WORLD.

Pistachio Challenge — take #1

Really… this might be one of the most frightening things I’ve willingly done.

Taking the elevator ride down to see newborn Tommy that first night when the doc called my room herself to tell us that, “He is a very very sick little baby and you need to come see him, right now.” — that doesn’t compare. It doesn’t. That’s a passive fear. A ‘this-it-out of-my-hands-absolutely’ fear.  That’s a helpless mind numbing fear that this little life you fought so hard to bring into the world is going to leave you… much too soon.

But this?

This was a different thing.

This. This was forcing myself to tell my child it’s okay to eat something we’ve told him for five years was very dangerous.

This. This was handing him a gun that could hold 20 bullets, putting in 1 and spinning the barrel. ‘Okay, bud, we are pretty sure you won’t actually get a shot off… point the gun at yourself and pull.’

This. This was really hard.

I won’t lie.

When I finally broke down and bought the pistachios last night to bring into the office this morning, I broke out in stress hives on my hands. I was that stressed out at the thought of the challenge.  I associated green nuts with BAD.

Bad nuts!

Oh come on, laugh a little. I’m trying here, folks. Haven’t you heard of relieving stress through comedy?

I met Tim and Tommy at the office this morning with the pistachios. Doc got started with the challenge soon after.

First sample was the hardest for me. When he chewed it up and didn’t begin screaming and throwing up… well, I felt tons better.

Second sample went fine as well. Tommy declared that they were tasty but salty. (But not spicy… thank goodness, no tingling tongue!) Just about the time they checked vitals before his third sample I could tell he was NOT feeling good at all.

He kept saying he was just hungry at first. So he had his third sample after doc checked him out and asked if he felt good enough to keep trying. Tommy said he did. Within a few moments he was moaning about how bad he felt with his head down on the desk… turning pale. Asked for the trash can just in case…

Yeh, I got the nurse. Doc said we needed to stay a bit longer and get vitals one last time. If all clear we could go get some light lunch to perk up his blood sugar and settle his stomach hopefully. He got a burger, but by the time he finished it I had to pull over on the side of the road for him.

Back to the office where Doc said we were done for the day. No way we would keep going.

He still thinks it was empty stomach. Said he wants to challenge with light breakfast next week.

Very proud of my smallish one. He was calm throughout everything. Even when he was getting sick on the side of the road… I got a thumbs up when he was all done. He says he’ll try again on Thursday. Sneezing and sniffling started soon after we got home. Antihistamine helped. No idea if stomach and nasal stuff are pure coincidence or very mild delayed reactions.

Mommy needs her juice once everyone is in bed. Just saying…

Peanut-fest 2010 (AKA I was allergic to peanuts but not anymore!) continues

Tommy has jumped into the world of ‘I-can-have-peanuts’ with both feet.

A sampling of what he’s had to eat this weekend:

*all images snagged online

My parents used to serve us toast with peanut butter with syrup on top and call it: Peanut Butter a la Carter… so Saturday morning we indulged in a childhood breakfast of mine. (Couldn’t find a pic with pb and syrup!)

The boys got a big bonus sleepover at Dad’s last night while Tori and I helped e and the kids move. (Thanks for helping out, Tim.) He happily helped out for peanut-fest as well with Puffs and the ice cream cone.

Friday night Tori was explaining to a friend that Tommy had outgrown his allergy. She fixed a spoon and handed it to Tommy to prove it. (After checking with me.) It’s like a party trick still.

My mom even made some cookies for the boy. He walked in the house and started dancing around … “Is that peanut butter cookies I smell?”

I’d say he’s enjoying this new freedom.

For those that might be wondering — is he having too much? Studies indicate when a child has outgrown a food allergy it’s important to keep eating the food so their body continues to be used to it. Okay, I admit, he’s had a LOT this weekend and it won’t be like this usually… but it’s okay. We have a lot to celebrate for him!

The other question I’ve had posed was: did he really have a peanut allergy? Yes, I’ve had an anonymous poster ask that. (Did not post comment, felt no need, but I will address the question.)

Tommy was a sickly baby. He wasn’t gaining weight properly. You know how there are growth charts for babies? And it’s curved upwards as they get older? Tommy’s line was nearly totally flat for a few months. We ran all sorts of tests checking for all sorts of things. The kid had non-stop diarrhea. I don’t mean like for a couple of weeks. I mean for a years. I got quite tired of running samples to the doc to check out. (Fun times.) Every doctor we saw urged us to give him fattening foods. In fact, when I was still nursing him the nurses and doc would both urge me to eat some fat dense foods: and every single time they’d list off peanuts, pistachios, cashews…

So, I tried. I truly tried to up the fat content of my milk.

When he was a toddler I was urged to give him peanut butter often. I even used peanut M&Ms as a reward when potty training. The pedi even said: ‘added bonus chocolate will help firm up stools.’ Uh – no not so much.

At one point I was sure… so sure I had finally realized what his problem was. Duh. Allergies!

I took him to the allergist armed with list of Tim’s food allergies as a child along with family history on my side of food allergies. The doc ordered a skin test of all that I listed off. And then came back to inform me that Tommy had no allergies at all. I think I might be the only mother in the history of the world disappointed to not be handed a list of what my child could no longer eat. I was so looking forward to finally knowing what was up with my kid. And being able to fix it.

Doc basically told me I was a seeing things that were not there. Said his random barfing *oh yeh, he’d throw up random times suddenly, after eating, laying in bed, whatever… said that was just probably reflux. He was waking up screaming hysterically at this time. She ordered some meds for that and told me to calm down.

Yeh, she had the bedside manner of a rabid nursing dingo momma. I digress.

I truly thought I was right on this one.  But listened to the doc. Again moms: follow your instinct. Just do it. Okay?

Meds did seem to help the night time random hysterical screaming and need to throw up. But he was still having diarrhea, still not packing on weight. I just worked on convincing myself he was a small kid.  With a few issues.

______________

And then he had a few of my pistachios. Three to be exact. And all hell broke loose in front of my eyes.

*Truly, knowing what I know now about allergic reactions… we’re lucky he’s alive. That was a huge reaction.

We did not see the allergist for a week since Katrina hit the next day and her office had damage and was without power for a few days. Got in and she confirmed multiple tree nut allergies. She was actually still as rude as could be. Yelled at me. Yeh, you figure that one out. She told me I was crazy and he had no allergies and then yelled at me that I did not magically know he was allergic to pistachios. Grrrrrrr.

Peanut had a small wheal but was deemed negative. I was told to avoid tree nuts and peanuts for his diet to be safe and to make it easier for people to understand. Keep in mind that he rarely had tree nuts, but peanut butter was a staple for him.

When we changed his diet — it was like seeing a switch thrown. He began gaining weight, his mystery diarrhea that plagued him for years was literally gone overnight… we stopped the reflux meds and he was FINE.

As time went on, I knew when he had an accidental exposure to peanuts. He’s get sniffly and have bad diarrhea, but the reaction would stop there usually. When we moved to our current allergist he confirmed my suspicion that there was indeed a peanut allergy in conjunction with the tree nut allergy. It was milder, but each exposure could potentially make the allergy worse and bring it up to the tree nut reaction level he had previously shown.

So, yes, I am sure he had the allergy. I am not one of those moms that decides her kid has an allergy because he coughed once when eating peanut butter. He’s had testing and seen an allergist for five years now. Five years almost to the day that we found his allergy… and then learned he’d outgrown.

Still in shock. And still oh-so-worried about Thursday.

Thursday is going to be a lot harder psychologically for me. I still have nightmares about handing him those pistachios. And now I’m going to sit next to my child and hold his hand and tell him we trust the doctor and urge him to eat a food that I’ve drilled into his head could kill him.

Peanuts were easy compared to this. But maybe it was a good practice for Tommy, Tim and me. We know what to expect for a challenge now. We know the protocol. We know what is there to keep him safe.

Tommy is willing to try it.

That kid. Dang, I am proud of him. So proud. That’s showing some bravery there.

I think I’ll fix him something with peanut butter to celebrate.

Oral Food Allergy Challenge AKA Peanut Challenge of 2010

This morning I went to wake up the kids at 6 a.m. Tommy was wide awake under the covers playing his game. When I asked how long he’d been awake… he wasn’t sure. Obviously nerves about the approaching test had him geared up.

Around 7:45 a.m. we headed out for our appointment. Tommy’s Dad was able to take off a few hours from work and met us up there.

Once they got all his vitals and did a breathing test we were set up in the challenge room.

You want me to eat WHAT?

Dr. D calmly explained to all three of us why he felt the test indicated Tommy was ready for this challenge. He opened up the crash cart, got the epi pens out… dished out the peanut butter… and it began.

Every 15 minutes Tommy’s vitals were monitored, then he was given a gradually increasing amount of peanut butter. If any type of reaction occurred we would stop immediately.

All told he ate seven samples of peanut butter.

Things got a bit boring after a while, can you tell by the pics?

He never had a single reaction.

Nothing.

Not a tingle, Not an itch, Not a wheeze… Nothing.

:-O

Eating his last HUGE sample.

He is now clinically considered free of his Peanut Allergy.

I’d write some long drawn out bit about how this made me feel… but truthfully I am waaaaay too emotionally drained from the day. We are all so very excited for him. I’m so very proud of him for being brave enough to try this.

Next Thursday we challenge his arch nemesis of all foods: pistachios. Now THAT might require a bit of something to keep me calm. Dr D really feels he’s outgrown it though.

Wow, this will really give him so much freedom in his life. No epipen belt. No medic alert bracelet. No freaked out mom when the school calls…

Wow.

Please insert food allergy mom freaking out here —>

I got a totally unexpected phone call today. Wait, back up, not true. When I saw the allergist’s office number on caller ID I figured it was my reminder call that we had an appointment in the morning to go over his allergy history and talk about test results. I expected a negative on the peanut and crazy high on tree nuts.

What I did not expect was the nurse to say, ” Dr. D wants to do an oral food challenge… we have his test results and he came up negative for everything.”

Being a totally in control calm mother… I dropped the phone.

As I dove off the bed frantically grabbing for iPrecious I must have looked like a fish gasping for air. “What? Wait? How? I mean…his diagnosis was based on a nasty anaphylactic reaction and positive skin tests since. How can it be NEGATIVE?”

I also, to my total surprise, found myself near tears. Not sure why yet. I think maybe it’s the possibility that this might be over. That he might be the 1:5 child that outgrows such a severe allergy. Maybe. I don’t know. I like surprises. Actually I LOVE surprises… notes on my van, flowers, sweet comment from those I love… but I wasn’t sure what to do with this one.

I’m still having a difficult time comprehending this. Dr. D even point-blank said last year, “This is a lifelong allergy. Get used to it.” And I was fine with that.

His last skin test for peanuts was negative. And I was okay to just keep avoiding since we were quite sure about the cashew/pistachio allergy.

But now… with his age and 0.0 test result for peanuts… and everything else being negative… Dr D wants to do the oral food challenge.

Tommy had said there was no way he’d do the challenge. No reason. And I agreed. But then it could be that we find out he’s no longer allergic to any of it. And… wow.

The nurse also said he wanted to do cashews in few weeks. Whoa, Bud. Whoa. One step at a time here, Buddy. I’m all on board for checking peanuts with a 0.0… but my understanding was that his RAST testing reported the presence of tree-nut antibodies in the blood, just that they were low enough to not be statistically relevant. Translation: antibodies are there but his body may have calmed down. He might not be allergic anymore.

The only way to find out?

Oral challenge. Basically: we don’t think you are allergic anymore, but the only way to find out is to give it a go. So — eat this!

And that is why you need to envision my trying not to FREAK out. For years I have coached this child: never touch pn/tn, always read labels, no baked good, no label means can’t have it, never hide if you think you are having a reaction, do you have your epi-belt on…. and so on and so on and so on and so on. And suddenly we’re being told he might have outgrown it?

Don’t get me wrong, I am cautiously beyond optimistic. But I saw what his little body did during that first anaphylactic reaction. I can still imagine him in my lap wheezing, covered head to toe in hives and bright red. He looked like he’d been sunburned and stung by a thousand fire ants all at once. He was throwing up. Lost control of his bowels… and this was all within a few minutes.

Of course I want this allergy to be gone.

But I’m scared to believe it.

So… baby steps. We’ll try peanuts in the morning. 8:30 a.m. No breakfast, no antihistamines.

They’ll put some on his arm, then his cheek, then his lip, then he’ll eat some. Vitals will be monitored throughout. They have all the emergency equipment on hand just in case. It’ll take 3-4 hours.

I am feeling fairly good about peanuts. Tree nuts? Get back to me later.

Deep breath…here we go…

*image from web

The dreaded blood draw

Back to school for a food allergy kid means getting forms signed and the proper stickers placed in the proper place on the Epi Pens. It means pulling out the Epi Pen Jr. Trainer Pen and showing people just how simple it is. It means constantly drilling into Tommy’s head: if you cannot read the label, you cannot have it. Period.

Your family allergist will most likely sign a Diet Prescription form for you on the first day of school when the nurse springs it on you at the last second… BUT he’ll also politely inform you that it’s been over a year and it’s time to review his allergies etc. Which translates as: you will drop by the hospital soon and get copious amounts of your offspring’s blood removed from his body so we can confirm that he does indeed continue to be deathly allergic to certain tree nuts and peanuts aren’t much better.

–sigh–

At this point I would to interject Tommy’s thoughts on the need for bloodwork: “This is so dumb. We know I’m allergic. I’m NOT going to eat peanuts or treenuts. Why are they torturing me again?”

ANYWAY.

Dr. D did indeed write up orders for the RAST test.  So early this morning Tommy and I headed up to the hospital. When he was younger I just helped hold him down and took him out for a treat afterwards.. Being older I knew I couldn’t just spring it on him as we walked in the door!  So, we talked last night. He decided he would be brave about it.

And he truly was. Even if the first picture does show you how nervous he was waiting for it to be done.

Great job, Tommy.

Love you, smallish one.

PS Tommy announced that, on the off chance he was one of the kids that outgrew the peanut allergy, he had no intentions of doing an in-office challenge. He was NOT down with that idea. Yes, I think it is possible he may have outgrown the peanut component of his allergy as it’s always been less severe than the tree nut allergy. But I can’t say I blame him at ALL. After having it pounded in your head for 5 years: “DO NOT TOUCH PEANUTS!!!!”  I can see the hesitation to suddenly be told: “Here, give this a try. Let’s see what happens.” No thanks, I’ll pass as well.

Hello ole’ blog

Things are still in limbo around here, in some ways. I have yet to get back into my daily blogging groove.

Sigh.

Kids and I have settled down into a routine pretty much here at the Green House. Wednesdays the kids spend the night with Dad. They are there every other weekend or as things work out as well… plus every Sunday morning as the children are continuing their classes in the Catholic Church.

Work is sporadic at best for me. So, I’m looking at returning to school soon. Fingers crossed I am able to secure a grant.

Any lawyers out there reading this blog? I need advice on how to set up an account for Tommy’s Peanut Dog charity donations. I’ve had a few people say they are willing to donate but want me to set up a 501(c)(3). From all I have read a charity may not benefit one individual. So, trying to figure out how to make donations tax exempt for people… but still be earmarked for the Peanut Dog. I can figure this out!

So, I’ve had horrible luck with PCs recently. Gave in and got a Mac finally. And. I. LOVE. It.

A LOT.

But, sadly, due to the computer deaths I have lost hundreds of pictures. I had uploaded many to photobucket, and have some secured on an EHD. But I lost some recent ones. Like… Tori’s party. I only have the ones I put on Photobucket.

At least this may inspire me to organize and back up more regularly. And I just finished checking out iPhoto on my lil’ Mac Mini. Looks freaking AWESOME. Can’t wait to start on that. Face recognition? How cool is THAT?!

Tim was involved in an accident in the Wallace Tunnel today. He’s fine, but his itty bitty clown car might not be. I took the kids to meet him and drive him home from Daphne tonight. It seemed the right thing to do. They were happy to give him a hug and know he was well.

Anyway… we are alive and well. Looking forward to the Spring. In a BIG way.

Reading labels for the dreaded food allergy 101

Today the kids (+1) and I ran into Wally World to grab a bag of shredded Mozzerella for the baked ravioli tonight. Out of pure habit I flipped over the package and scanned. I admit to being totally and utterly shocked to read: contains traces of pecans and walnuts.

I admit WM tends to go a tad crazy with the ‘may contain’ statements in their line of food. But I do appreciate it. I’d rather know always. But this wasn’t a “let’s be sure to cover our butt  with a may contain statement.”  This was a ‘look, this cheese will have traces of nuts in it, don’t say we didn’t warn you!’ And it made my heart skip a beat. So, being a mom I turned to Tommy and barked out: “Do you have your epi-belt on?!” and then I showed all the kids the label. They all were just as surprised as I was.

*I tired to take a photograph of the cheese with the iPrecious but the lighting stunk. I will get it another day to show everyone.

Along the same line of thought. Check out this label I found in our pantry recently.

Yes, this was in OUR pantry. We slip up too. By now you think I would know better.  We all make mistakes.

If you have Tommy under your care at any time… PLEASE remember to check each and every label of the food he will eat. It only takes a second of your time. If there is no label, then he may not have it.

End of discussion.

Thanks for watching out for the boy.

Food Allergy Awareness Week

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.