Jacky Now

I was just logged onto my YouTube account, when I came across some recent and not so recent comments on the video of Jack's soy reaction.
I am flooded with emotion and so thankful to the wonderful parent's who reach out to others, I am thankful for the educators and doctors who are making a difference for FPIES families.
I hardly made it through the years of discovering Jack's FPIES, I had nothing left to give back. I have not been super active in answering comments, questions and calls out for help. I apologize for that.

Jacky now is a 58 pound, pretty typical 7 year old and although he still has not passed soy, wheat, modified food starch, or barley, he is happier now than he has been in over 5 years.

More than Jack's food restrictions, his emotional issues have upset his life. He struggles with food issues, medical trauma and other issues with authority figures. I wish that when Jack was going thru all of the physical struggles, that I would have been able to protect him better to be sure that he was treated gently and I would've been sure to get a therapist involved, from the beginning.

When I realized that his behavior may be a reflection of his trauma, I started dealing with it in other ways and he is really coming around. I say things to him like, "man, when you were little, people strapped you down and put needles in your arms, feet and head. They put tubes up your nose and down your throat. They did so many things to you. It must have felt awful, but they were doing what they knew how to do, in order to save you."

Since we've started saying things like this to him, he seems to be happier and more calm.

Here Jack is now...

Gluten Vacation

Our GI doctor has been wanting Jack to try gluten to see if he still reacts, for about 2 years now.

We were not comfortable with the idea. Why mess with a good thing, right?

Jack had never had a super severe reaction to gluten, no vomiting or turning green, but his digestive track stops all together. He doesn't have a BM. He has gone 8 days without a BM and ended up with intussusception. Also, his behavior is effected, he screams, sasses and turns into a complete monster, probably due to the constipation.

So we were not on board... well, until last friday that is.

We were at his 6 month GI appointment and the nurse begged me again, "We really need to start trying new foods. I know you guys are hesitant, but we are sure he will do fine."

I wanted to say no, I wanted to grab little healthy Jacky and run out of there, but I was sure I would be chased by child protective services.

I am sure that the doctor wrote on Jack's chart, "Loony parents, do not want what's best for child. Won't let Jack eat ANYTHING!"

So I agreed. We didn't want to tell anyone, because we didn't want to get anyone's hopes up. But on Saturday we decided to start him on gluten to see if he would still react. He ate english muffins, granola, bread, candy, tortillas, crackers and more. Jack was so excited, I found him at the dining table giggling to himself, on more than one occasion. When I asked him what was so silly, he would say, "Nothing is silly, I am so excited that I am eating GLUTEN, duh!"

He felt okay on Saturday and Sunday, the excitement that he felt would have hid any icky feelings if there were any.

Monday he didn't have a BM, but we still went forth.

Today, Tuesday, I got a call from his teacher... he felt awful.

More than the pain in his belly, was the pain in his heart.

When I pulled up to pick him up from school he gave me a sideways smile. I scooped him up for a hug, I kissed his face all over and promised that I would make him the best Jack healthy bread ever.

I reminded him that some children do not have the chance to enjoy food at all. That some children have 2 foods they can eat and some have feeding tubes.

He gently nodded and wiped his tear and said, "I am sorry for them."

I told him he was lucky to go on a gluten adventure and asked him if it was worth the pain? and he said, "not really, but do you think I could go on another gluten vacation when I am 7?"

and I said, "of course! We'll plan it better then, you will eat a hamburger with a fluffy bun!"

He said, "That will be great!"

So, in 2 weeks we plan to go on a dairy vacation, in Children's hospital. I will keep you posted!

(Jack on Christmas)

PIZZA!

We have a new favorite around these parts... PIZZA!!!

All gluten, dairy, soy free products are NOT created equally. The rice crust that I attempted to use this morning, ended up in the garbage. It was flaky, dry, tasteless and falling apart!

"Rice Cheese" NEVER melts, and chunky sauce can make my 4 year old gag!

3 Key Ingredients make this possible:

1. DAIYA Cheese

It tastes like cheese, melts like cheese, stretches like cheese, can be sprinkled like cheese and best of all (as far as Jack is concerned) it looks like REAL cheese!

2. UDI'S Pizza Crust

This crust is soft, thick and the flavor is amazing!

3. MUIR GLEN ORGANIC Pizza Sauce

The fresh taste and smooth consistency is super satisfying!

His pizza looked so delicious, his brother begged me for a slice!

Donuts!

I received a special request for donuts!

I was up for the challenge. I used Cherrybrook Kitchen pancake mix and added less water to the mix. I fried it and then sprinkled some powdered sugar on top, SUCCESS!

APRIL 2010 - Easter for Jacky

This year Jacky got a chick. He was thrilled. Great Grandma Gracie catered to his needs and prepared a safe Easter dinner, just for Jack. It is wonderful to have such an amazingly supportive family. I actually cried when she told me that she made special mashed potatoes, just for him.

The BIG 4-0!

My boy is really growing and developing.

We were at Jack's pediatric appointment on Friday and he was 3'8" and 40 lbs!!!

I am so proud of him.

We started him in a parent co-op pre-school with a parent:child ratio of 1:4, knowing that there would be plenty of parents to keep him safe from offending foods. We were nervous to take the plunge into preschool, but he took right to it.

Jack brings his snack in his monkey bag, we provide his treats for birthdays and when they do cooking projects, Jack goes first and we substitute ingredients.

It has been amazing to see his personality develop. For the first time in his life, he has friends.

He also started Ranitidine about 2 months ago. He is hardly screaming anymore. We were experiencing at least 2, 1-3 hour fits per day, plus night screaming. GONE! He also decided to relax in the potty area and now he is POTTY TRAINED!!!

We tried everything; singing potty chair, Small Skivvies, Pirate Potty Book and Hat, treats, gifts, excursions, etc... Nothing worked.

Suddenly, about a month ago, he decided that it was time and that was that.

We are so pleased with his growth and development.

Valentine Swap!

This year my boys are 3 and 5. They compare EVERYTHING! So, we decided to make their Valentine treats the same.

Step one - buy 2 of the cheapest little boxes of chocolate ever

Step two - eat the chocolates out of one of the boxes

Step three - buy your little FPIES kiddo his/her favorite candies, cookies or treats

Step four - wash out the little box, to avoid contamination

Step five - fill the box with safe treats for your child, put the lid on

Step six - gift your children their boxes of "chocolates"

Here's to a normal, safe and wonderful Valentines Day!

Progress!

When Jacky was first diagnosed, I googled FPIES and Food Protein Induced Enterocolitis Syndrome.

NOTHING CAME UP!!!

Nothing at all.

I was afraid and I felt totally alone.

So I posted the video of him reacting to soy on YouTube.

This video is a record of myself taking Jack to his doctor to give him soy and video tape his reaction. No one believed me, our pediatrician and all of the doctors that had dealt with Jack did not think that he was suffering from more than a flu. The pediatrician in this video believed that Jack's episodes were tantrum related. I had to prove her wrong, I had to prove the world wrong, I owed it to Jack.

Now it has had 6,095 views.

The video has been used in American and European medical research and conferences.

Still feeling alone in the battle, I began a blog, which has helped us meet other parents of kids with FPIES.

Then came the support group. 58 families with children with FPIES visit and share their experiences, recipes, regrets, hope and friendship.

We have helped each other find doctors, made helpful phone calls to one another, organized play-dates with each other, supported each other during hospital stays, etc...

I want to thank all of you!

Jack wants to thank all of you!!!

(by the way, google FPIES now, it's amazing!)

Halloween Safety

The Halloween Breakfast Menu:

Canadian Bacon Full Moon

Bloody Fried Potatoes

Mochi Body Parts brushed with honey

Vampire Hemp Milk

We planned ahead this year and bought Jack safe treats and toys. He trick or treated the typical way for about 2 hours, then we switched out his bag. We have a family rule, no one eats anything till we get home, so there are no accidents. It was fantastic.

He ate:

Gummy Crabby Patties

Ring Pops

Pumpkin Peeps

Candy Corn

Light up Gummy Pumpkins

he got molding dough to play with

He got a rash from his face makeup, but that's it!!!

Just Rice.

Let me just say, the other day we stopped at Panda Express and Jacky was starving, so I had to put my thinking cap on. I saw a man next to me order the white rice, so I asked them if it was just rice, no oils, additives or anything. They said no, just rice, I know that not all FPIES kids can have rice, but Jacky can. We snagged a ketchup packet from the Wing Stop next door. So he ate a huge bowl of white rice, mixed with ketchup. He ate the whole bowl. I know that the rice couldn't have been that different from the rice I serve. He just felt completely normal, sitting at a restaurant, eating out of the same type of bowl as his brother. It was a happy moment.

In Love!

Jack is now 36 pounds and 38 inches tall.

Some of that weight can be contributed to Cherrybrook Kitchen.

Jack just LOVES to bake their yellow cake with chocolate and white frosting. He feels just like a "normal" kid, sticking his fingers in the frosting jar.

Prevacid the Miracle Drug

Since my last entry, we have started giving Prevacid before dinner every night. It has worked wonders! No more night screaming at all! He must've been in some pretty serious pain. I am so thankful to have my Jacky back, I am also so thankful that I do not have a newborn at this time. I can't handle the constant waking to screams in the night. :]

So the other night we went to the county fair and grandma got Jack a big bag of cotton candy. He can actually have it. Surprisingly the ingredients were almost purely sugar. I know that is not really surprising at all! So Jack now has a new favorite, COTTON CANDY!

Screams in the Night

Lately we have had nightly screaming episodes again. It seems that something is bothering Jack. He is totally tense and screaming, his eyes are spacey and he is really aggressive. I have not a clue what could be causing this sudden change in behavior/sleep. Poor guy. He may be hungry, he may be having a hard time internally, maybe it's acid reflux again, nightmares, who knows!?

We need to figure something out soon. I have been in denial and we have been putting Jack's FPIES on the back-burner. He needs to get patch testing, we need to figure out why he still weighs 32lbs and we need to ask someone why he is screaming thru the night like a gassy newborn.

Maybe he has grown out of FPIES. Maybe he is having acid reflux that we need to treat. Maybe not either of these.

I will get on the phone tomorrow. It just may do him some good.

ICE CREAM!

Living Harvest has come out with an ice cream!

With rich and creamy Tempt™, you won't miss dairy or soy frozen desserts one bit. Packed with natural goodness, every spoonful is a delightfully creamy treat. From flavorful Vanilla Bean all the way to exotic Coconut Lime, Tempt is simply irresistible in all five flavors.

Jack seriously thinks he has died and gone to heaven.

If you cannot have rice, don't get excited, there is a rice syrup in it. Sorry. :[

He was really nervous when he tried a bite, he screamed "no, it's belly sick"

I reassured him and said,

"Jack, I know it tastes delicious, but trust me, it's really yours."

He looked an me suspiciously and then hogged down the whole bowl.

And for that moment he looked just like a normal kid.

Jack turns 3.

People always seem to incorporate food into birthdays and celebrations. When D's birthday comes it's all about what we will be eating and what sort of cake he will have. Last year I prepared a huge birthday feast for little Jack, grilled kabobs featuring Jack safe foods, Jack safe cupcakes and a pinata with Jack safe candy. But Jack didn't take one lick of any of the food, he seemed afraid and unsure of it all, so this year we made it about Jack.

He could do whatever he wanted for a day.

He awoke.

Opened his gift, Brobee pajamas.

Put them on as his clothing for the day.

Went to lunch at Chipotle, Jack likes their pork, rice and black bean bowl.

We went to the mall to this old fashion toy store where Jack was told to pick any toy he fancied. There were some A M A Z I N G toys, but he picked a guinea pig stuffed animal.

We walked the mall, and got dairy free smoothies.

Then he was ready for bed.

I asked if he wanted to go to the Zoo the next day or spend time with family and friends at a park, he said "friends".

So the next day we packed up and went to grandma Annette's where family and friends came together to celebrate little Jack's 3rd birthday.

He hardly touched his birthday cookie, played on the slip n' slide and then passed out on the couch.

Happy Birthday Jack. We love your cheesy taste, spitfire attitude, goofy sense of humor, eccentric style, and your sweet kisses.

A new Cereal!

Jack always eats Koala Crisp

I am sure he gets bored. 

Last time we were at Whole Foods, we picked up Natures Path Corn Flakes, and Jack LOVES them. They only contain: Organic corn meal, concentrated organic grape juice, and sea salt. 

Back Again!

Poor little Jacky was back at it again. He had been slightly sick, or just not right all week, we sort of ignored the signs, on friday I called the GI for an appointment because of the recent behaviors Jack was exhibiting, fussiness, lack of hunger, irritability, lethargy and his bm's were full of mucus. He told us to bring him directly to the ER, so we loaded him into the car, 20 minutes down the road, he started vomiting. We were feeling so blessed to already be on our way. We made it there and he was admitted immediately. 

He is quite the sport, he hardly flinches for the IV, he knows how to operate the in-room TV's, he sucks in his tummy when the doctor starts poking around and he giggles like crazy when they listen to him breath. We are so thankful for his strong spirit and patience. 

I thought that we would have to completely start over with rice and work our way back up to his foods. We did this for a few days, which were miserable days. He was screaming and demanding cookies, hemp milk, rice bread, etc. Then, after some prayer and thought, we felt inspired to re-check his foods. We were feeding him items with possible trace amounts of his offending foods. We couldn't think of what he could have eaten, so we figure that this had to be it. So now we've just got to crack down on any possible exposure to the "bad foods" and help him to stay healthy.

A Change in Jack

We have noticed that Jack is happier than he has ever been before. He is less aggressive, communicating better, and more willing to trying new things. He has never attempted eating a vegetable, but for about 10 months now we have been working on broccoli. Over time he smelled, then touched, then licked, then sucked and then, most recently, dipped his broccoli in basalmic vinegar and ate it! 

Everyone that knows Jack and even people that have casually seen us have mentioned the change in Jack. It is amazing.

We think that he is finally feeling safe, maybe even comfortable with his food and even more importantly with his life.

The BEST PANCAKES!

Okay, so we've found the most amazing gluten-free, egg-free, dairy-free, soy-free pancakes EVER! They are amazing, you only need to add oil and your choice of milk substitute or even water!

CHECK YOUR LOCAL SPECIALTY GROCERY STORE OR GO HERE TO GET 'EM.

Support Update

I am so excited that I have received so many responses in my search for others who want to share their personal struggle as a parent of a child with FPIES. I am going to gather all of the emails and set up a forum for us to communicate. 

I also want to thank all of the supportive people who have left thank you's and encouraging notes. I apologize for the lack blogging I have done here recently, I plan to make it a more frequent occurrence. 

Have a fantastic day!