LA Children's, Take 1

In the continuing saga of attempting to meet Caden's medical needs, we called in a favor and got him an appointment with a doctor at the LA Children's Hospital.  Everything seemed to be going perfectly, with the doctor recommending a few tests that seem like answers to prayers.  Then the insurance kicked in and put the brakes on the whole thing, not wanting to approve and pay for the new tests.  We ultimately decided to make the drive anyway, just to meet with the doctor.

Since we were only going to be gone a few days, Adam got to ride along.  My dad also came with me We left Sunday afternoon, after church, and drove to Aunt Kara's house in Hurricane.  She lit a fire in her backyard and let Caden roast marshmallows, which he burned and happily scarfed down.  Then she made him a bed out of couch cushions on the floor and he thought he was in heaven.

Monday morning we got up and finished the drive in to LA and met with the doctor that afternoon.  The doctor was amazing and felt really good about the appointment.  For being such a good patient, Caden got to pick a prize.  He chose a full size Darth Vader helmet that includes sounds.  Since he'd brought along his sword, Darth Vader was my companion on the return trip Tuesday.

Eating on the road with Caden is difficult to say the least, but one thing he can eat is hamburger patties and french fries.  We made a lot of pit stops at McDonalds to fill up our tummies and stretch our legs.  Caden was a good big brother and made sure Adam got to play on the play place as well.

It was a lot of work for a doctor's appointment, but I am hopeful and encouraged about the direction we are going.  We will continue the insurance appeal and will go back to LA in a few months.

Denver: The Final Report

We went to Denver with three big questions:
1. Why are Caden's bowel's not responding to the maximum treatment for EGID? (ie, why is he still having such major symptoms)
2. Why does he gorge on a food the first day, eat half as much the second day, then refuse to eat the food thereafter? Is he reacting and I just can't see it?
3. How can we reduce the amount of time he spends on his backpack? (He currently gets 2-3 hours off in every 24)

We got three answers, with varying levels of satisfaction.
1. He has something more going on than just an EGID. We ruled out two really scary things and got sent home with a list of three other things to check out with the GI here. Since the GI here was out of ideas, it at least feels good to have a list of ideas to work through, even if there aren't any answers yet.  I made an appointment today and the soonest we can get in to our local GI is December 26.
2. People eat for two reasons. Either they are hungry or they really like the taste. Due to being on continuous feeds Caden is never hungry, and the formula can mess with your taste buds making everything just a little sour. In other words, he can likely eat the stuff, he just has no motivation. We can help correct that through a specified feeding regimen (see below).
3. By completely changing the way we mix his formula, when we give it to him, and how we give it to him we should be able to decrease the amount of fluid he needs in order to get his calories. As a bonus, this will help encourage oral eating. This will be a long process (they estimated at least a year to be eating 3 foods), and it won't be easy (he's been throwing up quite a bit since we started it Wednesday), but hopefully the long term reward will be worth it.

Welcome to Denver!

Bright and early Thursday morning I got a phone call, and the bubbly voice on the other end exclaimed, "Welcome to Denver!"  Stacy, the out of town patient coordinator for the Denver Children's Hospital, is my new best friend for the week.  She is taking amazing care of us while we are here for the one week out of state program at the Eosinophilic Disorder Clinic.

 

We met with the doctors yesterday and they amended our itinerary, cancelling some tests and adding in others.  I feel the new schedule will be much more productive.  Today was procedure day and Caden did well.  He was nervous and cried quite a bit, but happied up once we got back to the hotel.  The doctor learned useful information from this morning's procedure, and we'll know even more after the biopsies get back on Wednesday.  Caden bled more than usual, so the surgery lasted longer than expected, but they think they got the bleeding under control.  We have down time for the next few days, then Monday, Tuesday, and Wednesday are packed full.

Family Date Night

We thought it would be fun to have a family outing in lieu of our regular date night, so we loaded up the kids and went to the motocross races out at Rocky Mountain Raceway.  Ryan found us a fantastic spot to sit up on a hill right next to the finish line.  The kids loved the first race.  Then Eric started having an asthma attack.  We tried everything we could think of from having him breathe through his shirt, to trying to get upwind of the dust and exhaust, but in the end decided I should just take the younger two boys home to get Eric some medicine and Ryan would stay with Caden.  As I was leaving with Eric the kids were starting their race and Caden was fascinated by the idea that someone close to his age would get to ride a motorcycle. 

I didn't make it out of the parking lot before Ryan was calling me to say Caden was sick.  So I went back to get them.  By the time we got to my parents house to pick up Ryan's car Caden had vomited all over himself and his carseat (but not in the hat we had told him to use, yes, finding ourselves lacking a bowl we encouraged our child to take the hat off his head and try to catch the vomit in that).  So I stayed in Murray to clean the mess up and ride out the reaction with Caden while Ryan took the younger two home to give Eric a breathing treatment and put Kyle in bed. 

This family outing gets mixed reviews.  Its a fail since we spent basically no time together as a family and I wasn't prepared with the medicine Eric needed.  But the kids loved every second of the races they saw, and it was such a fun atmosphere I think we just may be crazy enough to try another event at Rocky Mountain Raceway.

Uh, Oh

Caden's version of why I spent Saturday afternoon in the ER with him:
"When my cousins were my age they threw their backpacks down the stairs*.  I thought it looked like fun, so I threw my backpack down the stairs.  Then my button came out and I saw the blood, and I thought, "Uh oh."  Then it started to hurt and I cried really loud."
*Editors note: Caden has never seen his cousins wear backpacks, let alone throw them down stairs.  I'm not sure where this gem came from.

In case you're curious, having a button the size of a large marble exit through a hole smaller than a pencil is painful, bloody, and traumatic for all involved.  And while mom stays calmer under the pressure than dad, mom wimped out when it came to forcing the new button through the rapidly closing and swelling hole whereas dad pushed it right through.  We had to go to the ER to check placement and make sure there was no internal bleeding.  We hung out for 2.5 hours before Caden was given a clean bill of health and the all clear to return home.

New Hardware

After another trip to the ER due to Caden helping himself to food, we've locked it up.  He simply thinks he is no longer allergic to food and doesn't believe us when we try to tell him otherwise.

Despite the potential for aiding in weight loss by cutting down on mindless munching, somehow I don't think gate hinges and bike locks are really going to take off as kitchen decor.

Little Miracles

This article is making the rounds in the food allergy community today:
Peanut-tainted blood triggers boy's allergic reaction, and I'm counting my blessings.

Last January when Caden had all those complications following his scope he lost so much blood he was admitted to the ICU for a blood transfusion.  As I sat holding my limp boy and waiting for the paperwork for the blood order to go through I was inspired with the thought that Caden might react to food proteins left in the blood from the donor.  When I quizzed the doctor about it he responded that although it was theoretically possible to have an allergic reaction to the blood, no such case had ever been documented.  I still insisted he be pre-dosed with Benadryl before the blood was administered.  Partway through the transfusion Caden started to have a reaction and further medication was administered.  My son was well cared for and the reaction was minimal, but I believe that was because everyone was on high alert and Caden's body was prepared to fight the reaction with the help of the Benadryl. 

As I look back on that weekend and recall all the craziness of the scope, the bleeding, the ICU, the lengthy healing process that all culminated in his EE/EC diagnosis I am so grateful that the Lord in his mercy saw fit to spare us from having to go through a life threatening reaction similar to what the young boy in the article experienced. 

"I'm allergic to stuff"

Yesterday we were visiting family and a family friend was trying to tease Caden.
Curt: Hey, Caden, want a Knuckle Sandwich?
Caden: No
Curt: How about about a Hertz Donut?
Caden: No, thank you.
Curt: Would you like a Hawaiian Punch?
Caden: Nope.
Curt: Well, why not?
Caden: 'Cause I'm allergic to stuff.

We are so proud of our Caden and the mature way he handles his allergies.  For the most part he just takes them in stride.  He is good to avoid food unless he asks one of his parents first.  Since he is currently eating just chicken, apples, sugar, and uniodized salt he gets told 'no' more often than not when it comes to food.

Eric is still mostly starting his food allergy journey.  He has a list of less than 10 safe foods as well, but is curious and wants to try everything he sees.  We're hoping he'll eventually settle into his lot as well as big brother has. 

This week is Food Allergy Awareness week.  As you go through your week, think of our boys and the millions of other Americans with food allergies.  If you want to go the extra mile, try to think of a non-food alternative the next time you are tempted to give food as a gift.  You know what I'm talking about - that plate of cookies with the thank you note, those cupcakes you're taking to school for the holiday party, and the refreshments you're in charge of bringing to your kid's next soccer game.  A little cultural shift away from all food all the time would go a long way to helping my boys hear 'yes' a little more and 'no' a little less.

A Big Thanks!

Thanks to everyone who emailed the Representatives on the Health and Human Services Committee! The formula bill passed out of committee with a favorable recommendation, with 6 voting for it and 3 voting against it. The next step is the House Floor!

The Legislative Session Begins

The Utah State Legislative session began on Monday.  I'm actively involved in my food allergy and EE support group's lobbying team, and we're trying to get a few bills passed this year. 

The most important bill is one that would require insurance companies to cover the expenise formula that both my boys need.  Its being sponsored by Representative Moss and is HB 233.  From time to time I'll post on my blog if we need emails written to certain legislators to help us in our efforts.  I'd really appreciate it if you took a moment to email when I post a link.  Even just a short 2 sentence email urging a representative to vote for HB 233 will be helpful. 

Other than that we'll just be watching other bills generally and lobbying if they have an effect on the allergy community. 

So, the first call to action is posted below.  It will take 2 minutes of your time, but may save the life of a child with a food allergy.  Thanks!

*****************

In the new legislative session, the school nurse matching funds line item is on the list of monies to be axed (Public Educational Appropriations Subcommittee). This is what districts have used the last couple of years to hire new nurses. The funding for the current year is $882K, which has been cut the past couple years and is down from $1million. If these funds are cut, we could lose more of our already dangerously few school nurse positions throughout the state, which puts our own children at risk whenever they’re at school.


What can you do? It’s simple! We are asking UFAN members, and all Utah parents who have children with health concerns, to write a short email, asking committee members and your legislators to please maintain funding for school nurses this year. Feel free to mention why you think school nurses are vital to your family’s health. Food allergies threaten the lives of our children every day, and school nurses are key to keeping Utah’s 32,000 food-allergic children safe.

Their next meeting is Thursday morning (tomorrow) at 8:00 a.m. so write it right now! To find the legislators for where you live—go to www.le.utah.gov , click on legislators, drop down menu to “find by address/map”, put in your address, and it will tell you who your legislators are… then if you click on their name all their information will come up. Send your email to your legislators.

Then, send that same email to the Public Education Appropriations Subcommittee: Sen. D. Chris Buttars, Chair dcbuttars@utahsenate.org and Rep. Merlynn T. Newbold, Chair merlynnnewbold@utah.gov

And finally, send it to the Executive Appropriations Committee: Steven M. Allred, Deputy Director, smallred@utah.gov and Jonathan Ball, Director, jball@utah.gov

Just Chicken

No more apples for Caden. He self eliminated them, then finally told me they were making him sick. So for now we're back to just chicken.

Shop for a Cause!

On Saturday, October 16 Macey's Department Stores nationwide will be holding their annual Shop for a Cause charity fundraiser. One of the charities selling coupons this year is my support group for Caden's eosinophilic desease.

Here is how it works:
You buy a ticket for $5. The entire $5 goes to APFED (American Partnership for Eosinophilic Disorders). You can get a ticket from me, or at a booth that will be set up in front of the Macey's in Orem that day.
Use your ticket Saturday, October 16 at Maceys to save 20% on sale, clearance, and regular priced clothes, accessories, frames, bed & bath, luggage, and housewares; save 10% on electronics, furniture, matress, and rugs; save 25% on any one fashion item.
PLUS you are entered for a chance to win a $500 gift card.

Success!

After the sad, sad failures of rice and potatoes we finally had a food trial success with Caden - APPLES! That means good things for the 100 quarts of applesauce we still have sitting in the basement. Caden has informed me he likes apples broken with no skin (sliced) or fixed with the skin on (whole). So if you get asked for a broken or fixed apple, now you know the lingo and will be able to oblige him.

A Sad Allergy Day

Its a sad day at our house on the allergy front.

Now that Eric is one and no longer nursing I'm supposed to re-trial all the foods he's avoiding, just to make sure. Yesterday I opted to start with milk. He failed. Big time. The result was 4 hours of puking. You'd think I would have learned my lesson and kept him off the carpet/hard to clean areas, but I kept thinking he was done. Oh well. One down, 8 to go. We'll be camping out in the bathroom for the next trial.

Last Wednesday I met with the allergist and was given the okay to start trialling a few foods with Caden. Because of its versatility we started with rice. Within 36 hours we could pretty much tell things weren't going well, but we held out and hoped. Today Caden is screaming, crying, sweating, straining. And I had to break the news to him that he didn't get any more rice. He took the news suprisingly well for a not quite three year old. I explained the pain he was feeling was because he's been eating rice and he hasn't asked for it again. Once this clears up we'll try potatoes. Poor kid is going to be so confused. No food. Yes food. No food. This food. Now that food. Blah.

G-Tube Surgery

Caden's surgery went amazingly well. We checked in at 7:45 Friday morning for a 9:15 surgery. The surgeon said everything went smoothly and he expected a quick recovery. Caden was a little groggy Friday afternoon and was content to stay in the room for a few hours. Then the nurse encouraged us to take him for a wagon ride to the play room since he was supposed to get out of bed and walk 4 times each day. Once Caden discovered the playroom we had a hard time dragging him back out. He spent about 3 hours there on Friday, and so much time there on Saturday the nurses had to schedule times for the doctors to see him because we were never in our room during regular rounds. One time as I drug him out of the playroom crying he exclaimed, "I don't want to go back to my room! There are doctors there! I want to stay in this room with the toys!" Smart boy. We used the wagon so much the nurses just let us keep it in our room during our short stints there.

Caden had lots of visitors in the short amount of time he was there - Grandma and Grandpa Dodds, Aunt Kellie, and Grandma and Grandpa Scherbel. The Carruth cousins sent some cards and games that Caden loved Saturday morning while he anxiously waited for the toyroom to open. Grandma and Grandpa Dodds attempted to help Caden play on the patio. One had to push Caden and the other pushed his IV pole. After dragging that IV pole around I'll never complain about the inconvenience of the backpack. After we got home on Sunday Caden got more visitors - Grandma and Grandpa Scherbel again, Kara, Dave, Karlee, and Chris. We got released so quck they had to visit us at home on Sunday. I guess the doctors figured any kid who could spend the whole day in the playroom could go home.

Accessorizing

We've decide to put Caden on a feeding tube. We have tried all the other treatments for his EE/EC and this is our last option. I realize he doesn't look 'that sick,' but the persistant symptoms and pain he has justify it and he is 'that sick.'

He got an NG tube yesterday and so far seems to be doing really well with it. He carries his pump and formula around in the little backpack, so he is able to be pretty mobile. Right now he is hooked up to the feeds for 18 hours a day. We hope to be able do decrease that as he shows he can tolerate the formula.

He is scheduled for surgery on July 30 to get his G tube (the button in his tummy).

We have no idea how long he'll be on the tube. At a minimum 3-6 months, but it could be years. He'll initially be on just the special formula, then we'll reintroduce foods one at a time. The amount of time he's on the tube and formula totally depends on how he responds as we reintroduce foods.

This is a fun picture I took after a trip to the allergist a few weeks ago. While there they did some skin prick testing, which makes his back itchy. To distract him, the doctor offered stickers. Caden determined they were bandaids and attempted to use them to soothe his "little pokes."

Give It Up and Eat Like Us

Give it Up
This week is Food Allergy Awareness Week, and one of the national advocay organizations (Food Allergy Initiative) is sponsoring a 'give it up' contest.

The "Give It Up" campaign encourages children, parents, families and friends to show their support for the millions of Americans with food allergies by abstaining from eating a favorite food during the entire week. The "Give It Up" Facebook page also encourages supporters to share photos and/or videos on how they're "giving up" a favorite food. One lucky submitter will win an Apple iPad.

Eat Like Us
Next week is National Eosinophil Awareness Week, and the group organizing that (apfed) is encouraging us to invite friends and family to have an 'Eat Like Us' day. To avoid being redundant, I'm posting about both challenges together.

If you want to eat like us, you could pick one (or more) of the foods we are avoiding and try eliminating for a day or a week. Between the two boys, right now we avoid milk, eggs, wheat, soy (oil and lecithin are okay), fish, shellfish, peanuts, tree nuts, corn, oats, gluten, beans, melons, cucumbers, oranges, bananas, carrots and mushrooms.


Utah Food Allergy Network
If you're up for something with a little higher effort/reward ratio, consider becoming a fan of UFAN on Facebook. You'll be entered into a drawing to win one of 4 great prizes - 2 tickets to see Twilight Saga: Eclipse movie on June 29 at 5 pm; Face painting birthday party package; some allergy friendly treats; or The BugaBees Friends with Food Allergies childrens' picture book.

Have fun reading labels, and this week think of us!

Cryptogenic Eosinophilic Colitis and Esophagitis (EC and EE for short)

That is Caden’s newest diagnosis. I spoke with his GI doctor at length today. The biopsy results came back positive for eosinophils in both his colon and esophagus. A reading of 4-6 is somewhat normal, a reading of 20+ is enough to diagnose the disease. Caden was a 25 in his esophagus and a 45 in his colon. The disease is classified as cryptogenic because the scope showed no inflammation but the biopsies were positive (hence, its cryptic, or hidden).

The treatment for now is Prednazone, a steroid. We’ll talk with the doctor and adjust his dosage weekly. We’ll give that 3-6 months to work. If that doesn’t clear up his digestive issues we’ll have to go to more extreme measures. We’re really hoping the steroids work.

This is a disease related to food allergies. Some food in Caden’s diet aggravates the eosinophils causing the pain he has when he has a bowel movement. We’re also going to be trying to figure out which food is the problem, but its all trial and error.

For more information you can read http://www.apfed.org/egid.htm

In related news, his internal bleeding hasn’t completely stopped. Its slowed enough the doctor didn’t think we need to go back to Primary’s, but we will continue to watch him and will likely take him in for a blood test tomorrow to check his levels.

Eric's First Big Reaction

I got the phone call while in a meeting at work last night. When Ryan called the 3rd time I decided to answer.

"Um, I did something wrong. I gave baby Eric milk."

My heart dropped. "Do you need to know where the Epi-pen is?"

"No, I found the Benadryl and gave him some of that. He seems okay. Just rashed and swollen."

"Do I need to come home?"

"No, I think I have things under control now."

Thirty minutes later I called as I walked out of the office.

"How is he?"

"Well, he's not getting any worse, but he's not getting any better."

"Give him more Benadryl."

"I've already given him 4 times the dose for his weight."

"Give him more anyway. Thats what the allergist had me do when Caden reacted."

"He was scratching at the rash, so I've slathered his head in Cortisone cream a few times."

"Good idea. I'll be home in 20 minutes."

By the time I got home the second dose of Benadryl had kicked in. Eric was doing much better, but still looked pretty sad. Ryan filled me in on the whole story. I'd left both boys home while I went to Provo for a meeting. I'd be gone just 2 hours and we figured Ryan could feed Eric rice cereal if he got hungry. He loved the cereal, but was coughing just a bit so Ryan decided he needed a drink to wash it down. Eric wasn't a fan of the water, or the sugar water. Resourceful Ryan decided to try a little bit of 2% milk, warmed up in a sippy cup. The milk was a winner and Eric began to gulp it down. Less than a minute into drinking it, Ryan noticed a rash starting to form around his mouth. That was the beginning of the 'uh-oh.' Then Eric began to scream. Ran started calling me and hunting for medicine. Once he found and administered the Benadryl he did what any dad would do - started a photo shoot. :)

Eric hadn't been reacting to milk through my milk, and he'd tested negative. We really thought we were in the clear on that one. Ryan doesn't have much experience with little kids. He didn't know you don't give any child under the age of 1 milk, he just knew we didn't give it to Caden because he was allergic. He figured since there was no allergy the milk wouldn't be a problem. We're back on hyper vigilance as we SLOWLY introduce solids.

Allergy Follow Up

I took the boys back to the allergist yesterday as a follow up to our appointment in October. There wasn't much good news.

Eric - Allergic to corn, wheat, eggs, soy, fish, peanuts, tree nuts. I was given the okay to slowly start him on solids, with slow being the operative word. We're supposed to wait 2 full weeks between the introduction of new foods. At this rate he'll have about 12 foods he can eat by the time he turns 1. We'll go back for another follow up around that time as well.

Caden - Neither the soy or the rice seemed to be the problem, so now he needs to have his GI tract scoped and biopsied. I've already set up an appointment with the GI doctor for this upcoming Monday. As we were leaving the allergist threw out that I might consider pulling tomatoes from his diet to see what that does. I'm thinking I'll do that after the scope.

So what was the good news? The type of allergies Eric has are typically outgrown very quickly. The allergist said if he weren't Caden's brother he'd expect the allergies would be outgrown within a year, but given Caden's history he's thinking more 2-3 years. And for Caden, at the last appointment I realized Caden is allergic to gluten and not just to all the grains that contain gluten. I've worried ever since that meant he was Celaic, a disease that can't be outgrown. The allergist said a gluten allergy is different than Celiac, so there is still a possibility he will outgrow it. Cooking gluten free is my biggest challenge related to the allergies, so you have no idea how happy the hope of getting gluten/grains back makes me.