Saturday, September 24, 2011

The Happs

Hello world. We are alive. We've been having lots of fun lately so please excuse our disappearance. We'll try to do better. Jake has had lots of doc appts, and my dear mom was in town for love and support, and we had my hilarious and thoughtful friend Caren from SLC come visit. We've been doing well, and the last few nights Jake has been sleeping better, going from waking every hour to waking every 3-4. We are hoping it lasts and are very thankful. The only thing we have been doing different is that I have been eating pretty much the same things every single day and his stomach seems happy with that, and we try and wear him out as much as possible by having dance parties in the living room, blowing bubbles, and encouraging him to bounce and play with his toys.

He has trailed more foods and failed every one. Our biggest concern is wondering how to teach him to eat, and wondering what he will eat one day. He has had a reaction to: pears, apples, rice cereal, and peaches. His reaction to pears and apples was projectile vomiting for several hours and with rice and peaches it was a full blown FPIES reaction where he went into shock, went pale, vomited, etc. We're really not sure what he will be able to eat. His body does not recognize or absorb those foods as nutrients and does everything it can to get rid of them. So strange so frustrating. The allergist called FPIES a beast. I wish I could take it head on, but we have to wait this one out until he is older and grows out of it. Could be in 5 years, could be in 2. We are working on a plan with the allergist to get him trying some hypoallergenic formula and we will slowly do some in clinic food trials.

However, He has been having GREAT days and is smiling more and crying less. It is wonderful!!! He is almost crawling, rolls everywhere, and pulls himself up and bounces on anything he can get his hands on. He broke the 20lb marker and he loves bubbles. When I get brave enough we will venture out with new foods, but until then, I am just fine not having to worry about if he is going to react or not.

Tuesday, September 13, 2011


Grandma is in town. She is a saint and an angel in every single way. I got an outstanding groupon deal for a spa treatment in Beverly Hills. I paid $29 and got a $125 massage/facial. It was HEAVEN. Thank you Grandma!!!

Thursday, September 8, 2011

Page 2: Landon Schultz Can Only Eat Five Foods Because of FPIES, the Worst Kind of Allergies - ABC News

Page 2: Landon Schultz Can Only Eat Five Foods Because of FPIES, the Worst Kind of Allergies - ABC News

Living With FPIES

We have our first appointment with an allergist in the morning to discuss Jake's FPIES. If you want to know a little what it is like living with a little one who has this please feel free to read this article. My heart breaks every time.
Page 3 of 3

March 10, 2011

Fallon Schultz, a 28-year-old clinical social worker
from Howell, N.J., has known since her son Landon
was two weeks old that something was wrong. He had
horrible eczema and would scream day and night,
projectile vomiting after feeding as if he were allergic
to her own breast milk.

At her pediatrician's advice, Schultz switched to soy
and then to a nutrition formula, but it got much w
orse. Landon had diarrhea filled with blood and
mucus, 10 times a day, and soon he began bleeding
from the worsening eczema under the hair on his

Schultz gave him wheat when he was a toddler and
found him in his crib after a nap, "in a pool of vomit
completely limp." She rushed him off to a
gastroenterologist who said it was only a virus.

"I was hysterical," said his mother. "She kept telling
me I was a new mom and to stop worrying --
everything would be fine and things could be worse.
It was like a smack in the face."

At one point, Landon lost two pounds in two weeks
and had virtually stopped growing. Desperate, after
Schultz found "orange, jelly stuff" -- undigested food,
skin and blood in his diaper, she sought help from

Later, she learned that her baby's colon was

It took Schultz 19 months to get a final diagnosis --
food protein induced entercolitis syndrome, or FPIES,
a condition so severe that Landon can only eat five
foods: ripe strawberries, blueberries, avocados,
grapes, raisins and elemental formula.

"These kids are fighting natural food and adapting to
artificial food," said Schultz. "He can have artificial
flavoring, but not Italian ice with natural flavors like

Schultz drew from every emotional reserve she could
find to save her son, who is now 2, logging 482
phone calls to fight with her insurance company,
which refused to pay for his formula and the an initial
$500 visit to
Children's Hospital of Philadelphia

Numerous medical specialists dismissed her
concerns and she even received an anonymous letter
accusing her of having
Munchausen syndrome by
proxy -- a mental illness in which a parent fabricates
the sickness of a child in their care.

Landon was eventually diagnosed by doctors at

"They diagnosed him in 10 minutes," said his mother.
"I can't explain the feeling. It was bittersweet --
terrifying, and a relief."

And now the hospital's foundation has agreed to join
Schultz in setting up her new nonprofit, the
United Family Fund
to support education and
advocacy, and to find a cure for the syndrome. She is
hoping to raise an initial $300,000 from corporate
sponsors to raise awareness.

No other organizations exist for FPIES.

"Local doctors don't know about the disease and
Toddler Landon Schultz Eats Only 5 Foods or Goes Into Shock
because they don't pick it up. [Landon] has permanent
damage and is not going to get better," said Schultz.
"If you don't have something that is cookie-cutter,
they think you are crazy. I am trying to turn
something that has been a nightmare to help
someone else's child. It's been a long two years."

No Diagnostic Code Exists for

Doctors don't even have an ICD-9 code to diagnose
FPIES, according to the United Family Fund, which is
pushing for that medical diagnostic tool.

"Our lives have been taken over by FPIES, and I am
just trying to do everything I can as a mother to help
him and other children affected by this cruel disease,"
she said. "I want to do something big. I want these
kids to be better. It's not good enough for my son
and or the kids going through this."

Landon cannot eat 27 fruits, vegetables, milk and soy
products, grains and meats. If he does, he is in
excruciating pain. Then, for days afterwards, his
body fights the proteins in the food, damaging his
gut and causing such dangerous vomiting and
diarrhea that he runs the risk of going into a septic-
like shock.

Experts have no idea how many children suffer from
FPIES. Most will outgrow it in four or five years, but
Landon's case is so severe, no one can predict his
prognosis, according to Schultz.

"It's unclear how big the population is -- we don't
know," said
Dr. Jonathan Spergel, chief of CHOP's
allergy division, who estimates perhaps 1 in 100,000
children have the syndrome.

"My guess is we are better trained at recognizing it,
and therefore the disease is rising," Spergel said.

Processed foods, fewer probiotics, preservatives and
the use of antibiotics may all play a role, he said, but
research in this type of food allergy -- which may
behave like an autoimmune disease -- is still in its

"FPIES is not like the classic food allergies where you
eat and it occurs seconds later, like with a peanut
allergy," he said. "The reaction is delayed. That's what
makes it hard to diagnose."

Doctors can test fairly accurately for food allergies
with a skin and blood test, but most cases of FPIES
turn up negative.

"The gold standard is to give a child food and watch
for their reaction," he said. "But it's not pleasant to see
them get sick, so we work primarily on history, and
families describe if they ate this food and had a
reaction. We tell them to try this one food for a week
and then the next one."

When Schultz tried to introduce sweet potatoes into
Landon's diet last September, he had violent reaction
that landed back at CHOP for five days.

Even Gastric Tubes Fail Kids

Other families have struggled to keep their children
nourished and healthy.

Neveya O'Donnell was diagnosed with FPIES when she
was 8 months old, after she began bottle feeding.
Now, at 17 months old, she is less than 28 inches
long and weighs 16 pounds.

She's been fed with nasal and gastric tubes that "never
stayed in," according to her mother Renee O'Donnell,
an optician from Eau Claire, Wis.

"Unfortunately this has not helped her stay on the
growth charts," said O'Donnell, 28. "She continues to
fall farther and farther below the line."

Right now, Neveya can only take Neocate JR, which
costs $65 a can. Her mother also fought to get
insurance to pay.

"We had an in-hospital food trial for lamb and
bananas at the beginning of December -- lamb
caused skin problems," she said. "But when we did the
bananas she went into shock within four hours. This
is a typical reaction to all the foods we have tried."
Responding to families like the O'Donnells, who help
with FPIES Family United Fund, has inspired Schultz.

"I turned from mourning all the time, to feeling
empowered," she said. "I feel like I am helping others,
giving a place for the families in our community."

Life hasn't been easy for her family. The couple had a
car accident when Schultz was 9 months pregnant
and her husband Chris had spinal surgery, and is
now unemployed. They moved out of their house and
are renting it to decrease their expenses, because one
parent had to stay home with Landon.

Now, Landon also is participating in a study on
cytokines, TNF and response to gut flora, which is
being run by Dr. Harumi Jyonouchi, an associate
professor at University of Medicine and Dentistry of
New Jersey. She is also director of the university's

Pediatric Center for Rare and Complex Disease.

Schulz said they have determined that her son likely
would not overcome his severe reaction to foods. But
CHOP's Spergel says he is "more optimistic."

"The majority of these kids we see outgrow it," he
said. "Landon may not be able to eat everything, and
he'll always need some elemental formula to get his
balanced calories, but he'll be able to eat more than
four foods."

Spergel applauds Schultz for starting her nonprofit
and has pledged to support her.

"She has very global vision to everything -- which is
fabulous," he said. "She is high energy, which is
good. I say, 'Be careful, don't over-stretch yourself.'
But I am impressed with how much she has done and
how fast she's done it."

To which Schultz characteristically responds, "I have
enough room to stretch right now. We have such an
incredible community and I have been so touched by
strangers. I don't even know them and they provide
support. That's one of the beautiful things. I've been
able to delegate and not one person said, 'I can't do

To provide corporate sponsorship or donations to
begin international research go to the
FPIES United
Family Fund.


Tuesday, September 6, 2011

Labor Day

Tido's Tacos are GREAT!

Sampling Different Soda Flavors from around the world at the Pepsi Factory
Grandma loves Jake and walked him all around downtown
I ALMOST bought these for Jake. Almost.
Loving Toshi
Bouncing up and down in Barstow on our way to see Grandma and Grandpa Turner

Jake is a water boy!!!
First time in a pool and it was a Blast!

Cute picture with Grandpa Turner
Hanging out with Grandma Turner waiting to splish splash
It was super cold in Denny's when we stopped in Barstow.

Hanging out at Grandma's Pool!

This weekend was a lot of fun (minus our sweet boy having some tummy issues all night and waking every hour screaming-nothing new). We managed to do a TON of really fun things!

Friday I packed up the car and picked Andy up at 3pm and we started heading for Vegas when his mom told us a forest fire en route had shut down parts the freeway. We turned around and headed home. We didnt want to get stuck on the freeway with only one lane open and our baby. So...we rented the movie The Adjustment Bureau and put bebe to bed. We woke super early on Saturday and hit the road, stopping in Barstow for breakfast. Jake stretched his wee little legs and bounced around while we ate some pancakes and off we went making record time!

We were able to swim in our in-laws new pool and get a tan. I got my first tan of the summer, now that summers over!!!

Jake is a water boy, he absolutely LOVED the water! He splashed and laughed for a long time. Andy went to a pool store and bought him an inflatable chair. It was worth every penny. We spent that evening playing with family and catching up eating some seriously yummy grub and watching football. Auntie Lynda and Uncle Ryan drove all the way from SLC to see Jake Bake.

We were able to go to church on Sunday with our friends Brittany and Braden Anderson, who we met out here in LA when we first moved out. They ended up moving to Vegas just a few blocks from Andy's parents. It was so good to see them! Brittany is one of the most talented gorgeous gals around with a heart of gold, and she has the sweetest new little babe. She can sew or craft anything, and I mean ANYTHING. She taught me how to make a quilt before Jake arrived. I love catching up with friends.

We went to the M&M and Pepsi factories on the Strip. I dont know why they call them factories because I was fully expecting to see how M&Ms were made, but it was just a 4 story gift shop. Disappointing, but we still had a great time. We taste tested 14 different sodas from around the world. My least favorite was one from Italy and my all time favorite was green apple soda from Japan. Yum.

We went swimming some more and had a wonderful visit. We left on Monday and that evening Andy and I went to Tido's Tacos not too far from our house. THE BEST TACOS EVER! Wow, I cant stop thinking about how good they were. Savory and just plain good. It was awesome to have Andy home for 3 days and to spend time just hanging out with family.

Friday, September 2, 2011

Happy Labor Day Weekend...

We're going to Vegas!!!

Montana 2011-Part II

HUGE tree we found on our hike
Happy boy with grass allergies playing in the grass
Tap Tap Tapping on Grandpa's Hat
Jackson MONTANA Hot Springs (not to be confused with Jackson, WY)
Me and my bebe boy with sock gloves on his hands. We spared his hands from the HUGE mosquitoes
Gone fishin'
Secret Fishing Hole
Like Father Like Son, Chase and my big bro

Our last couple days we were invited to the Olsen Family Ranch (two of the 153 Jackson Residents live there). We had an awesome homestead dinner and they called in their horses from the fields and Jake rode his first horse. Unfortunately, those picture are on my sister in law's camera, but I will post them when I am able to get them.

Jackson, MT also has some hot springs where you can swim and soak in the spectacular natural hot springs mineral pool. It is one of my favorite things to do, and it is never crowded.

We also spent the last few days fishing and my brother caught a record sized Brooke Trout. We played games and puzzled, relaxed, rode 4 wheelers, and went for another hike. We even saw our first bear!!!

It was pure heaven. I am counting down the days until next year.

Thursday, September 1, 2011

Montana 2011-Part I

What does Great Grandma Carson have in her purse that I can play with?
Jake didnt like the wind so we put a rag around his head. Problem solved.
Playing with cousins
Man vs. Wild. My crazy brother and a brookie (he threw it back safely)
Adorable nephew, Chase Carson
This babe is almost 20 lbs so hiking got a bit heavy!
Searching for wild huckleberries. We found just enough for muffins.
Moooing at the cows.
Grandpa Carson and Jake time at Miner's Lake
Cute baby in the wilderness
Jake LOVES to be outside.
Happy Boy
Our first couple days we went to Miner's Lake, Pintler Falls, and hunted for wild Huckleberries to make some delicious muffins. Jake got really bad hay fever (he has his dad's allergies) and Montana is full of grasses, hay, and nature's finest allergies, but that didnt stop him from having a good time with cousins, grandparents, and great grandparents. We hiked, fished, played in the cabin, stared at cows, and saw beautiful places with only the sound of nature for miles around.