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Sunday, July 19, 2015

Carter's Anaphylaxis aka WORST DAY EVER

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Ug.  I'm not really wanting to re-live what happened, but I think it's important to journal these big experiences.  So, here goes.  It's been four weeks, so I should stop putting it off.

It was just a long, awful day.  There's no way around it.  Calvin was getting an endoscopy (scope of his esphogus, stomach and duodendum, along with biopsies of all of them) to see if he also had EOE (the disease Carter has).  It was all the way up at Primary Children's Hospital--which is an hour each way.  We were the first surgery of the day since Calvin is so young.  We had to leave at the crack of dawn.  While Calvin was getting his procedure, Claudy took Carter to get his blood drawn.  A few weeks ago, after eating dinner he drank some soy milk.  Even though he's had soy for over two years now, and scoped clean on it, he broke out in hives all over his face.  He's never drank straight soy milk (other than a soy challenge when he was one)--the only time he really has soy is when I cook with soy sauce, which isn't straight soy and it's only a Tablespoon or so at a time.  We were worried that maybe having so much at once could have caused a reaction, so, we needed to see if he'd lost his tolerance to soy milk.  His allergist wanted blood work.  We figured while we were already there that we'd have Carter do that too.  Carter hates getting his blood drawn, and I was glad it was Claudy who took him while I stayed with Calvin.

We finally got home around noon and we were all pooped from the drive, getting up early and the nerves of having our baby undergo anesthesia.

Our plan was to eat lunch and put the boys down (and hopefully get a nap ourselves, since Claudy had taken the day off work).

Claudy was upstairs on the computer, and I ran to the bathroom.  Claudy had a feeling to check on Carter.  Within just minutes of him being by himself, he had found a Grandmother's Sugar Cookie that I had thrown away in the garbage, gotten it out, and presumably eaten some.  Claudy said he found him with crumbs everywhere, Calvin eating some, and frosting on Carter's face.

Looking back--we should have given him the Epi-Pen right away.  But, I will admit with some shame that I'm terrified to give it.  I don't want to give it.  I don't know anyone that wants to hold down a screaming little boy and stab a needle into their thigh and hold it there for ten seconds.  And, looking back, I was looking for every excuse to not give it.  We weren't 100% sure that he had eaten any of the cookie since we hadn't been there to view it.  He might have only had the frosting--which is what he does with cupcakes.  If so, the frosting may have had shortening and not butter--we're not sure since the label only breaks down the ingredients in the entire cookie.  Based on the packaging, it had eggs, wheat and dairy in it.  Three of his top allergens.  Claudy immediately gave him Benedryl and I said we needed to head to the ER.

Now, I get why people call an ambulance.  I just didn't want the hoopla and scare Carter if he hadn't eaten it, and if the Benedryl would take care of it (not to mention the huge expense).  Plus, we live just a few blocks from a hospital.  We rationalized that we could get there sooner.  Again--probably stupid since an ambulance is equipped in case he crashes, and you get priority when you get to the hospital.  

We parked in the ER parking lot and watched him like a hawk.  By this point, the hives that had blown up all over one side of his face were really subsiding.  He wasn't having any other symptoms and so we felt relieved that maybe it was topical, or he hadn't had enough to cause any serious reaction.  We waited until it'd been an hour since he'd eaten it--most reactions happen quickly.  Although, as we learned, it can still happen hours later.

Right when we were about to pull out, Carter was doubled over, saying his tummy hurt.  We figured it was just his stomach reacting to the cookie.  No big deal.  Claudy and I even disagreed about whether we should take him inside, or go home to use the bathroom.  I said we should just go home.  Claudy said he didn't want him to go in his pants, in case it was explosive.  I hemmed and hawed because Carter didn't have his shoes on (we'd RAN out of the house) and I didn't know where a bathroom was in the hospital.  Claudy finally convinced me to take him, and boy am I glad he did!

As I was carrying Carter, he was like a rag doll in my arms.  I kept telling him to hold on, not realizing that anaphylaxis was setting in.  When we finally got to a bathroom, I looked at him and the hives were re-appearing!  He was also gagging and acting like he was going to vomit.  Boy was I glad we were already in the hospital!  He also had huge patches of bright red skin.  Not just a hive, but entire sections.  His nose, ears, arm pits and genitals/upper thighs were flaming red.  He wasn't able to go potty but was crying that his stomach hurt so bad.

I fled to the ER with him in my arms, since we were in the general area of the hospital.  I was dismayed that there was someone in front of us.  I kept debating whether I should scream I need help, or if I should be polite--again--the ambulance would have saved us in this regard.  

Unfortunately, I don't feel that the hospital staff was acting urgent or taking us very seriously.  When we got to the triage nurse I exclaimed "My son has known, severe allergies to wheat, dairy and eggs and he had a cookie with all three in them."  I know it's hard to tell when you're the one in panic mode, perhaps they were trying to keep me calm, or perhaps they're not that familiar with the literature, but every second counts!  I wasn't sure if acting hysterical would help them take me more serious or less serious so I tried to be calm but assertive.

I called Claudy to come inside at once, and we were escorted back.  By this point, Carter was so limp, he was snorting/making a weird noise, he had hives on his stomach, his nose was now running and his eyes were rolling back in his head.  They put monitors on him and I kept exclaiming "Are you going to give him epinepherine??"  This is the medication that can save your life when you're having a serious reaction.  I was dismayed that they said they had to wait for the doctor.  I was on the bed with Carter, he was splayed out in my lap moaning from the stomach pain and they said, "We're watching his vitals, and they look OK."  I felt I had to keep advocating saying, "He has severe asthma, it wouldn't take much for him to stop breathing."  Your chances of dying from anaphylaxis go up if you have asthma, since it often cuts of your airway.  It seemed to take forever for the doctor to come; when he did, he agreed he needed epinepherine.  I thought they would keep some in the ER, but he said he had to wait for the pharmacy.  I was about to explode.  We had been there for what felt like forever (I didn't pay attention to an actual clock)...he was progressing--more signs and symptoms constantly and still NO gosh darn EPINEPHERINE!  Meanwhile, they did start an IV, which Carter abhores--and he was screaming.  "NOOO pokies!  I already had pokies today!"  My heart was breaking.  

When they finally brought the epinepherine in and gave it to him his vitals went through the roof.  I'm not sure if it's because epinepherine is adrenaline, or because he was so pissed he was getting poked again.  Can you blame the poor kid??

Once he was seeming to respond to the medication and seemed more stable I called my mom to let her know what had happened.  I had been strong up to that point, but when I went to tell her what happened my voice caught and I couldn't say a word.  All I could hear was her saying, "Megan?  Megan? Are you there?"  I just started to bawl and told her.  I tried to keep it short, as I could see Carter was looking at me and seemed worried that I was losing it.

I have since put in a complaint about the hospital's procedures and response to the anaphylaxis.  While the staff was nice enough, I didn't feel that they had things in place to respond quickly.  All medical literature points to the earlier the epinepherine is given, the more likelihood that you will live through the anaphylaxis.  I felt that they were waiting for him to crash before responding quickly.  I really don't know if I feel comfortable bringing him back to that hospital, which is unfortunate since they are the closest hospital to us.  I am glad I spoke up.  In the general letter they sent me in response to my complaint, they said the manager would talk to the staff and to the pharmacy.  I was hoping they'd discuss whether I was incorrect in how I perceived things or not--I'm fine being told that I was just in Momma Bear mode, but it seemed like the same letter they send to everyone.  Very generic.  My allergist said if that happens again, to just give it to him from my own diaper bag.  I wasn't sure I was allowed to give medication, once I was admitted to the hospital, but I realize how silly that is if my son's life is on the line.

As per procedure, we had to stay there for four hours for monitoring.  You have to wait to make sure that it doesn't come back.  Carter and I were exhausted and took a nap on the bed together.  Two major things to both of my boys, in two different hospitals just spent me.  

We were very lucky that our awesome Elder's Quorum President came and gave Carter a blessing with Claudy.  That was a huge relief and comfort as well.

We learned so much from this experience. For sure, next time we will give him the epi-pen and not wait.

Afterwards, we had a serious talking-to with Carter.  We went over (as we have, many times before...but perhaps it stuck this time) that he CANNOT eat anything without asking us if it's OK.  Or, unless we hand it to him.

But, at the same time that felt completely ridiculous.  I was getting after my child for eating a sugar cookie with bright pink frosting and sprinkles on top.  Something designed for kids--that they shouldn't have to worry if they're going to die from eating it.  So asinine.

Also--some people in the allergy community have commented that they do not keep their children's allergens in their house.  I totally get that, and I've been tempted to do that too.  I like the idea of your home being a safe place...but we have SO MANY ALLERGENS.  It doesn't seem right to deprive Calvin either.  We thought we had every precaution in place.  The allergens are kept in a top shelf, that he couldn't reach--even with a chair--in a pantry with a childlock.  I would have never guessed that a cookie, I had bought for myself to enjoy during naptime--that had gone stale so I threw it away would have been what did us in.  I guess it goes to show you are human and can't think of everything.  Our allergist recommends, and my husband agrees and I mostly agree (ha) that he's got to learn to ask, and that it's good for him to be prepared at home for the real world.  He can't assume.  Even if I only ever bought stuff that was safe for him, and he just ate everything and anything in our house--an accident could happen outside our home, or some packaging or recipe could be changed from an old favorite and we might not catch it.  There are just so many hidden dangers.  You can only prepare the best you can and make sure you have your Epi-Pen (and not be afraid to use it.)

I am truly grateful he responded to the epinepherine and that he lived through this attack.  It's just sooo hard to know that we very likely will face this again.  It's not one of those things you can say, "Oh...we learned our lesson.  Glad we'll never have to go through that again."  Because, with so many allergens, and him being so little, and you know...having to eat all the time...his chances of having it happen again are very real.  It's a hard pill to swallow.

It is literally gut wrenching...seeing your child react to food as if it were a lethal dose of poison isn't something I'd wish on anyone. It is the most anxiety ridden thing to go through...and we've gone through it twice.  It feels like a near-death experience.  It's jarring and honestly, it takes me awhile to come down from.  When Carter's eyes were rolling back, and I felt like I had to plead for the nurses to get going I couldn't help but wonder..."Will I walk out of the hospital alone...without my child?  Will this be the last day I get to hold him?  Did I tell him I loved him today?"  You know you shouldn't go there, but it's a reality and it's hard to not let it wash over you in the moment...and then replay those awful moments like PTSD.

On one hand, I don't want Carter to remember this harrowing experience and he might not since he's so young.  But, part of me does...so that he will be more careful when he reaches for food.  He knew he was being sneaky--that's why he waited until he was alone.  What an aweful burden to place on a three-year-old.

I hate food allergies.  I truly, truly do.  I pray that they will find a cure, and if they don't that it won't take my son away from me.  

I'm so glad he's OK and try to not hold my breath and go back to normal life.  I've heard with this you have to have a healthy level of anxiety--you can't be lax with it, but you can't let it take over your life.  Finding a balance is truly hard.  But, I know I have to for my mental health and for the example I set for Carter.  

I'm so grateful, that even though this was awful to write about and think about, that my beautiful boy is upstairs sleeping safely and soundly.  

Calvin Update

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I had take a moment to write a few lines about my Caley Cal.  Since I don't do monthly updates, it's easy to forget if I've written down different milestones, especially managing this and my Instagram feed. And, I've had a ginormous freelancing project.  It's eating up every evening after the boys are in bed, every nap time and frankly--I don't feel like writing for fun when I just got done doing it for my job.  But, I know that these moments are precious, so I am forcing myself to capture some now.

I believe I already noted that he's been saying "ought oh" for awhile.  For some reason, I don't really count that as his first word, since I feel like it's more of a sound.  He's definitely said "mamama" although I don't think he equates it to me.  However...I think he's said his first, INTENTIONAL word.  And, it's "happy".  What an odd first word, right?  We listen to Pharrell William's song, "Happy" all the time--as it's pretty much Carter's theme song.  We caught Calvin saying over and over after the billionth time playing it "happy, happy, happy".  It's hilarious!  If we say it enough, he'll repeat it back.  What a good listener.  He's always responded to music, and so I guess I shouldn't be surprised that he's repeating lyrics as his first word.  My little Mozart!

He's also been walking on his knees.  I really need to get a picture of it.  I've gotten so used to it, but anytime we're out and about and he does it people love to comment.  I know it's because he loves being upright (hates laying down) and he acts like he's missing out by having to be looking down while he's crawling. He's been doing this for quite some time.  He'll go great distances too!  If he's in a big rush though, he'll revert back to his speedy crawling.

He's also run out of patience with Carter!  If Carter tries to wriggle a toy out of Calvin's death grasp Calvin will not tolerate it anymore.  Gone are the days of docile Calvin!  He will first try to avoid it with some deft defense by hugging the toy in and turning his body.  If Carter doesn't get the hint (or, if he does and still chooses to ignore it, which happens 99.99% of the time) Calvin will start to scream, grunt and holler all combined into one angry war cry.  It's quite the sound!  The other day as Carter was retreating, I could have SWORN Calvin was cussing Carter out in baby gibberish.  The tone of his voice, the intensity and the dirty look on his face said it all.  He went on and on as if to really tell brother off.  I couldn't help but laugh!

He's started being a bit more to handle at church.  Don't get me wrong--he'll still snuggle/be held most of it.  But, now he's also figured out that it's fun to roam.  Our days of letting him walk around during sacrament have begun!  He goes all over during Sunday School and Young Women's...but I feel that's easier to manage, then him trying to get out of the pew.  I'll miss him when he goes to nursery, but always feel that by the time 18 months comes along you're a bit worn out.  He's been so good for so long, but I sense a change in the air.

He will hold his own bottles, but only when laying down.  I think the whole gravity thing helps.  I know I should start getting him on sippies, but I just don't want to go to the work.  He's hit and miss about using straws, so I've lazily kept him on the bottle.  Plus, he's up to drinking 8 ounces almost every time, and most of our toddler sippies only hold 6ish ounces.  Excuses--I know.  I'm already getting lazy, and it's only my second!!

He's enjoying other people more and more.  He loves to flirt--look at people, and then shyly turn away, only to whiplash back to make sure that they're still watching him.  It's pretty funny.  He also loves to stand on the pew at church and hold onto the back to see everyone who is behind us and every week I swear he's smiling more at people and enjoying their attention.  I'm in Young Women's now, and I he's such a distraction.  I might have to have Claudy take him during that portion of church because every girl there wants to hold him, or watch his antics, and he doesn't mind the audience one bit (and he loves the treats too!).

And last, but certainly not least--he's walking!  He's been taking steps here and there for a month.  BUT...last night, as I was making dinner I saw him, all on his own accord, just walk right out of the kitchen.  I had to do a double take!  I'd been working on it with him, by placing him farther and farther away from me and having him walk to me.  I knew he could do it, but he seemed to want to wait until he could free stand.  Once he realized how to get erect without any help or stabilization he seemed much more willing to give it a go.  He walked back and forth from the kitchen to the living room with a giant smile on his face.  He even pushed himself by holding some of his shoes while walking--already multitasking.  You could seriously read his thoughts by his expression.  He seemed to be saying "This is SOOO much better holding things while I walk, then having to drag them while I crawl.  I'm LOVING this."  He even walked around church a ton today.  While it's still not all the time, I think it's safe to say he's not going back.  He loves when we cheer for him, and the little genius even understands me when I say "stand up and walk" and he'll do it.

I love my little man.  Calvin, you are so dear to me!

Thursday, July 2, 2015

Calvin's Scope Results

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Calvin in his hospital scrubs, right before they took him for the endoscopy.
I posted to my Facebook and Instagram Calvin's scope results, but wanted to document it here as well.

First off--the procedure went beautifully.  I think Carter had a hard time because by this point, he had been hospitalized multiple times, so he was super leery of medical personnel.  So, I was expecting it to be harder, however Calvin had no problems being handed over to the surgeon.  

The only thing I was worried about, was that they lay them down to put on the gas mask before administering the general anesthesia.  He loathes being on his back.  Even for me!  Diaper changing and dressing him may as well be torture.  Thankfully, we had a great anesthesiologist who listened to my concerns.  I asked that he just hold him upright while they have him breathe into the mask, and lay him down once he was drowsy or out of it.  They said they did that and he was a total champ.  In fact, they thought it was so cute how he took it standing up and how happy he was that they all wanted to keep him.  I said they could for a few hours, while I took a nap.  Ha!  

He even woke up from the anesthesia really well too.  He wasn't even crying.  He was being held by a stranger and didn't even seem to mind.  He kept tugging at his IV, but other than that he snuggled and seemed his little self even in post op.  He did so well we were released within the half hour!  He did need Tylenol off an on over the next few days, but he really was quite happy most of the time and only grumpy here and there.  I have the bravest, most resilient boys!

We were hopeful the results were good because the GI always comes out and gives us pictures of what everything looked like and tells us how things were visually.  He said visually everything looked fabulous--no swelling, strictures or any sense of damage.  I was optimistically nervous.  I know that you can still have EOE/fail a scope once they look at it on a cellular level.  

After the pathologist looked at the biopsies they confirmed there were no eosinophils--which is how an esophagus should look like!  Which means....drum roll please...he does not have EOE!  Which means we don't have to restrict his diet at all.  Which means no awful doctor appointments, no pain, no more surgeries...basically everything a normal and healthy child should be.  

Granted, he could develop it later in life.  But, we won't ever worry about re-scoping him again unless warning signs start to appear.  But, I feel pretty good since he was eating all of the top offending foods and still passed.  We do still have to not feed him any nuts (those are true anaphylaxis allergies) but those are easy peasy to avoid compared to Carter's diet--esspecially since we avoid those for Carter anyways.  Calvin and I even celebrated with an oatmeal chocolate chip cookie after Carter had gone down for a nap.  

I do feel bad for Carter that he is the only one with this disease in our immediate family (my uncle has it, and I believe my Grandma does too--but she's too old to scope in her opinion).  However, I am so truly thankful that I do not have to put another child through it.  I was gearing myself up for a bad answer and the thought of going through hell and back again was just exhausting.  Of course, I would do it for Calvin, but I literally did not know if I had it in me.  It was so time consuming, awful and just plain sad putting Carter what he went through, that doing it again caused my heart so my pain at just the thought of it.

I'm so glad we can ignore Calvin's patch testing (posted a few posts back) and just feed him like a normal child.  I know we'll have to be careful with Carter and we'll still try to eat mostly what he can eat, but how freeing, how wonderful!  Truly, the Lord heard our prayers.  I'm sure Calvin will have trials in other ways, as everyone does--but at least it's not this.  I'm glad we had him scoped to know for sure.  What an incredible peace of mind.  

Bedtime Success!

After lamenting about our bedtime struggles, I thought I'd share a recent triumph (while subsequently praying I don't jinx us).

If you recall, Carter was having a super difficult time going to bed, and thus keeping Carter up to.  It was a dreaded time.

We asked for some feedback and got the great idea of splitting their bedtimes.  I fought it for awhile because I'm the type to just "get it over with"...so the thought of doing it twice didn't appeal.

Then, an epiphany hit...what if we call it "special time"?  Carter loves anything that has "special" in it.  We call his food allergy foods his "special foods" and we call our favorite drink stand a "special drink".  I figured the game was won by this pivotal naming.

So, we still do our regular bedtime routine.  But, instead of Carter dragging it out and not being motivated to do any of it, we just remind him that he gets to do "special time" once it's over with.  That helps in and of itself.  

Then, we put Calvin to bed.  Afterwards, Carter gets to come downstairs with mom and dad.  I think this makes him feel big and well, special.  It's tempting for me to jump into doing dishes or other things, but I make sure that we turn it into some one on one time.  Granted...he usually requests to watch a show or play on our phones.  We never let him play on our phones except for during this time.  He has a favorite Transformers Game downloaded on Claudy's phone, and I'll let him watch Despicable Me clips on my phone.  We'll sit and snuggle him with the lights off, in our living room while he does this.  After Calvin is good and fast asleep (usually 20 minutes-ish) we'll send Carter to bed.  

He still gets out of his room every once in awhile, but the fight is pretty much gone!  Of course, he always wants to play a bit longer, but it is night and day.  Once he is in his room, he pretty much walks himself to bed and stays there until morning!  It's a prayer answered.  A true, modern  miracle.

It's a total win-win.  Calvin gets to go to bed when he's tired.  Carter gets one on one time with mom and dad and gets to do something privileged he normally doesn't.  Both kids go to bed happy, which makes for a VERY happy mom and dad.  It does put Carter's bed time back about a half of an hour, but I think it's totally worth it, and he still takes great naps each day.

All throughout the day Carter will ask "Do I get special time tonight?"  Or, will request what show he is wanting later that night.  We can also bring it up if his behavior is getting bad to remind him that "special time" isn't a given and must be earned.

I pray that this little trick never gets old and that this will last a nice, long while.  

Sunday, June 7, 2015

Carter in the Press Again

Once again it was National Food Allergy Awareness Week back in May.  I really feel that it's the duty of parents to speak up for their children and to help educate others.  Whether that's for food allergies, or other diseases or conditions which affect their children.  How can I expect others to properly handle Carter at church/school/sports when I haven't spoken up and tried to help others understand how serious his food allergies are?

Thankfully, I know an awesome reporter who was willing to do a story.  I thought I'd just be a source for her, and to help her find other allergy families and statistics.  However, she decided to focus just on our family.  While it can be vulnerable sharing your story, your kids' pictures and a really scary experience, I know it can be worth it.  If just one person who read the story realizes that food allergies can be deadly and need to be dealt with caution, then I find that a victory.

I really appreciated the thorough coverage the reporter gave the story. She had good, creditable information and I think she did a really good job explaining key facts.

Here's the story, in case you missed it:

Dealing with deadly food allergies: Utah mom shares her story
By Tracie Snowder
SALT LAKE CITY — Megan Lavin’s first child, Carter, was almost one-year-old when she gave him yogurt for the first time.

Carter was sensitive to nine foods at the time and Lavin had waited to give him dairy.

“I remember it well. I gave him key lime Greek yogurt,” Lavin, 29, told KSL.com. “He was inhaling it. He really seemed to like it.”

Lavin thought she had achieved another healthy food victory, but minutes later, Carter went into anaphylactic shock.

“I had no idea how serious it was, but I had this terrible feeling like ‘I need to get in to the E.R. now,’” Lavin said.

She rushed Carter to the hospital as he exhibited more alarming symptoms: itchy eyes, runny nose, vomiting, his body was swelling up and getting red, and his eyes were rolling into the back of his head.

“I was screaming and clapping to try and keep him awake while I sped to the hospital,” she said. “I remember grabbing him and running through the doors and just racing towards the admittance lady saying, ‘Please help my child.’”

Fortunately, doctors were able to stop the allergy attack and Carter survived just fine. Lavin went straight to a board-certified allergist at Primary Children’s Hospital.

Living with severe food allergies.

Up to 15 million people in the United States have food allergies and one in every 13 children has one, according to Food Allergy Research and Education Inc. (FARE). Some eight foods account for 90 percent of all food-related allergic reactions in the U.S., FARE states. They are peanuts, tree nuts, milk, eggs, wheat, soy, fish and shellfish.

The allergist determined Carter has severe allergies to milk, peanuts, all tree nuts, eggs and oatmeal that can send him into anaphylactic shock.

“Anaphylaxis is a sudden, severe, potentially fatal, systemic allergic reaction that can involve various areas of the body (such as skin, respiratory tract, gastrointestinal tract, and cardiovascular system),” states utahfoodallergy.com.

Lavin’s life changed almost overnight. Her son is allergic to 39 foods, and that includes almost everything that comes prepackaged in the store. She considers cooking for her family to be a part-time job. “I have to cook from scratch,” Lavin said. “It takes up hours of my day — the planning, prep and clean up.”

And it just doesn’t affect their home life. When they are around other people, Lavin has to be cautious and make sure her son doesn’t touch someone else’s food. “Instead of being thrilled that we’re invited to a social event, I get nervous,” she said. “Barbeques, birthday parties, holiday get-togethers, all of these could potentially have something life-threatening to him.”

Lavin has worked hard to find delectable recipes for cookies and cakes and bread using unusual ingredients. She keeps cupcakes in the freezer to bring to parties where there will be cake.

Her second son, Calvin, also has food allergies, but so far he is only allergic to three types of nuts.

But she doesn’t consider it to be a burden because she says she wants her child to have as normal a life as possible. “I feel like I'm doing what any mother would do,” Lavin says. “Who wouldn't want their child to have a chocolate chip cookie? What mother wouldn't want their child to have a full life, full of yummy things to eat?”

Helping kids with severe food allergies

It’s impossible to avoid being around food that contain allergens, but if you know a child with a severe food allergy, ask the parents what you can do to help. Some would prefer your kids wash their hands with soap and water after coming in contact with the food allergens, others would prefer you to not bring foods like peanut butter, Lavin said.

Anaphylactic shock symptoms: Severe itching of the eyes or face Swallowing and breathing difficulties Abdominal pain Cramps Vomiting Diarrhea Hives Angioedema (swelling similar to hives, but the swelling is beneath the skin instead of on the surface) If you have anaphylaxis, seek emergency medical attention immediately. Source: WebMD.com

“I think there is a way for everyone to feel included and enjoy food, too,” she added. “It just depends on how much people are willing to converse and work together.” 

Is there anything most kids can eat? “Smarties, Dum-dums, Swedish Fish, Skittles and Mike and Ikes are almost always safe for food allergy kids,” Lavin said.

The importance of EpiPens 

Lavin always has an EpiPen (a needle fitted into a tube that looks like a pen, used for putting a drug into someone who is having a severe allergic reaction) on hand, but she says it will not always save someone’s life.

“People still die who have used EpiPens,” she said. “It just ensures reduced symptoms to allow them a greater chance at living through the attack.” She says it would be great if everyone could learn to use an EpiPen.

“With food allergies on the rise, about 50 percent since 1997, it’s pretty certain that you, a loved one, a neighbor, a friend, someone in your church, your kids’ sports team… someone will have a food allergy,” she said.

“Administering an EpiPen correctly in that crucial window of time can save someone’s life.”

Lavin considers it as important as knowing CPR.

The University of Utah School of Medicine has “A Shot to Live” program that helps educate school officials and community members on how to use an EpiPen. For more information, visit medicine.utah.edu/pediatrics/ashottolive.

*Originally posted on KSL.com

Friday, June 5, 2015

Allergy Update

This week was tough and long.

We needed to patch test Carter to wheat and sunflower seeds since he passed those via prick test.  We decided to patch test Calvin too.  Typically you wait until they've been scoped and proven to have EOE before patch testing.  However, he does have several warning signs, and we can't get him scoped until later in the month.  We didn't want to waste any time since it's hard to get an appointment, so we went ahead and did both of them at the same time.

Thankfully, Claudy could come with me two out of the three appointments.  But, let me tell you, even with both of us, there were times both boys were screaming and it was just plain miserable.

Carter was complaining about every five minutes about the patches on his back (keep in mind you have to keep them on for 48 hours).  I feel terrible, because I had him keep it on.  I checked and they seemed fine, and I thought he was just complaining about the restrictiveness of the tape and because it's hot and probably uncomfortable.  But, he had a huge sore/welt where the wheat had been and several other positives, so I feel bad if he had truly been in pain for the past 48 hours.

I counted it up, and we had to go to Primary Children's hospital on Tuesday, Thursday and Friday this week.  It literally ate up the entire week.  It was 11 hours total if you count commuting too.

We had some good news though!

Carter can now eat sunflower seeds (and subsequently Sunbutter--which is like peanut butter made out of sunflower seeds.  Hooray for Sunbutter and bananas/apples/toast! as well as a trail mix made out of seeds).  Hooray!  That's a huge win.

He also passed chili powder, cinnamon and red bell pepper.  I've actually been giving those to him here and there, since they were such small reactions last time.  It's good to be sure and now not be nervous when I give those to him.  Yay for more variety!  I love bell peppers--it's a great snack as well as something to use in recipes.

Sadly, as I mentioned wheat was a huge fail.  So much so, that we're having to put steroid creams on it to help it heal.  He also failed paprika, cucumber and cilantro for the second time.  I had hoped he had grown out of those.  That's a bummer.  I feel bad the poor kid can't have pickles.

I don't think we'll patch test Carter again until he's older.  He just really hated it.  To put him through that again, we'll need him to understand why because he was miserable through the four day process.

I think what was saddest was Calvin's test.  He was literally screaming his head off the entire hour drive to get his patches taken off.  When they were finally off, the nursed rubbed his back and he immediately fell asleep in Claudy's arms.  It was the saddest, yet sweetest thing.  The poor kid just wanted this stupid test done.  I felt so bad.

Oh, how I hate allergies.  I'm grateful for the progress, but wish it wasn't at the cost of a long, exhausting week, putting my poor kiddos through painful testing, and paired with bad news as well.  I just kept shaking my head when here it is, finally beautiful weather and it's summer and we're stuck either driving to an appointment, or at an appointment.  My kids should be outside enjoying the sunshine and not undergoing procedures at Primary Children's.

Calvin actually had horrible results:

Corn ++
Egg whites +
Milk is doubtful
Potato ++
Rice +
Soy: -
Wheat is doubtful

A plus means a bad reaction, and that you should no longer eat those.  All of those are staples!  Even Carter eats corn, rice and potatoes.  That's all we do for side dishes and grains at our house.  I was literally shocked because Calvin eats all of those, all of the time.  Our Dr. did say to wait until we get the scope back to confirm that Calvin has EOE.  If for some miracle he doesn't, then we can ignore the test.  But, if he does have it, not only will we have the low blow of him having the disease, but we'll have to completely rework and think outside the box to feed Calvin.

Even from day 1, when Carter only had like ten foods, he could always eat potato and rice.  Calvin loves potato and rice and I literally want to rock back and forth while crying if I have to take those two away.

I'm going to prolong my mourning until we know for sure.  I'm going to try and shelf it in some obscure place in my mind and not think about it. I'm going to be on pins and needles until Calvin has his scope in a few weeks.

Please Lord, let Calvin not have this ridiculous disease.  If he does, please give me strength to accept it.

Sunday, May 31, 2015

Capturing Calvin: A Whole Year Old!

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Holy guacamole!  My baby is no longer a baby.  He is an entire year old.  No more will his age be counted in just months.  Time with Calvin has gone even faster than it did with Carter.  I think I've tried to savour it more, knowing how fast it goes, but that sure didn't help time slow down.

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What fun you had destroying your birthday cake.  At first you were really unsure.  You acted like we might have placed an alien in front of you.  But then, after Daddy showed you, you put your finger in and licked the frosting.  Instead of lifting up a piece of cake to your mouth, you decided it'd be easier to just dunk your face in the cake.  Pretty soon you were devouring it and throwing it ALL OVER THE KITCHEN.  You had such a big chunk of it in your hair that it looked like you had a dread.  I'm so glad you liked your cake.  Big brother was a vulture and liked it too--even scampering across the kitchen to pick up any big chunks that would fall. (Hence why we dressed him down to his underwear too.)  You had pretty good aim and managed to get your Aunt Molly and Uncle Travis with a few pieces of cake too from across the room!

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I say this every month, but you are truly evolving.  You're this wonderful present that has just keeps giving.  Just when I think you have come so far out of your shell and are so fun, you open up even more and show us even more sparkling personality.  I'm not sure if there is any correlation, but after we switched you from soy formula to cow's formula you seemed even happier.  Perhaps it wasn't agreeing with you?

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You love to laugh at brother and it just eggs him on further.  

You love to scream high pitched.

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You find it absolutely hilarious to drop food from your tray.  You do it just to get a reaction.  You wait with expectant eyes for me to say something.  

You love to say "ought oh!".  It also sometimes seems like you're saying "no" and "ball".

You have mastered picking up a ball and rolling it to me.  You squeal with delight when I roll it back to you . It's as if you're thrilled that we can finally play a game together.

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You like to walk while holding our hands, and can even do it with just the support of one of our hands.

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You've figured out how to climb up onto big brother's bed and seem pretty darn proud of that accomplishment.

You love to crawl in the dirt and in the grass.

You love our little kiddie pool and like to sit and lean over it and splash.  (Although, you will cry if big brother splashes you too much.)

You don't like to sleep with your stuffed sea horse and promptly throw him out of the crib if we try to put him in there to settle you down.  

You're getting much happier and easier about putting down for naps or bedtime.  You'll still sometimes cry, but sometimes you'll smile at me when I'm placing you down--which is a far cry from you desperately clinging to me when I'd put you in your crib.  THANK YOU.

You are still taking two naps a day, and sleeping around 12 hours at night.  You are a rock star!

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With strawberries in season, you seem to really love those.  You really like my pumpkin chocolate chip muffins too (and of course chocolate cake now).  I make a vegan, naturally sweetened homemade chocolate ice cream which you could eat and eat all day too.  You still like yogurt in the mornings and will try most things, although you often won't give things a second bite.  You like noodles too.  You get so upset that you can't feed yourself.  I try to let you, but some things like applesauce or soup require a spoon and skill above your level and it freaks you out.  You often have to have a bowl or spoon to hold too, just to feel like the cool kids.  You like craisins too.  You like to try and help hold your bottle.  

You love to walk along the furniture and your favorite place in the house is in front of our big living room window.  You're like a cat and just love to stand and watch the outside world.  You'll pound on the window and gawk at everything and everyone.

You love to jump.  Your legs have 0% fat on them and are pure muscle.  In fact, when you were getting your one year vaccinations you tightened your legs because you were frightened.  The nurse literally said, "I can't get the needle in, his muscles are so large and tight!"  I felt bad for you, because it took longer and you didn't realize that you tensing up was making it worse.  Poor guy!

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You STILL (seriously????) have just four teeth.  I can see two other top teeth, but they just cannot seem to break through.  You poor thing!

The other day you let Stacey and Molly hold you.  Let's hope you're getting more out of the stranger danger phase.

You love to put things in and out of containers.  You still like to play in the kitchen cabinets.

You don't like to be left alone in a room.

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You still like to climb the stairs, but seem content to just go up 3-4 of them, which is fine with me.

You love to poke daddy in the eye and grab onto his lips.  I'm surprised you haven't ripped them off yet, you yank so hard!

You love to clap!

You are starting to wrestle with brother.  Or, more likely, he wrestles with you and you allow it a bit until he smashes you too much.  You're such a patient little brother.  Carter is really lucky you put up with so many of his antics!

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You are fascinated by the computer and would pound on the keyboard if we let you.  You would also play in your brother's little potty if we let you.  YUCK!

You love to drive cars on the carpet and will crawl and push them at the same time.

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You seem to like singing.  During church you'll try and sing along, and when I rock you at night, I sing to you and you make sounds as if you're trying to join in harmony.  It's adorable!

You still let me snuggle you, and I hope that will never end.

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While there are moments when both you and brother are screaming and it seems tough, for the most part, having two has been way easier than I imagined.  Looking back over your last year, I just think we would have been crazy to stop at Carter.  We thought we were so happy and fulfilled with Carter.  But, being a family of four has been immensely fun and rewarding.  Your laughter, your silliness, your sweetness and patience have rounded out our family.  We needed you, and we're so glad you joined us.  I know there is nothing but good times ahead as we continue to see your personality blossom.

We love you Calvin.  Happy birthday my sweet Cal.