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!

Not so SpOoKy HaLLoWeEn!

I fixed the boys an exciting Halloween breakfast. I created a bat pancake, bacon and green hemp milk for Jack. The rest of the family had normal bat pancakes, bacon, bloody eggs, and zombie juice. 

For Jack's pancakes I winged it and used; 

1/4 cup brown rice flour

1/4 cup potato starch

1 substitute egg (energy egg sub. powder in box)

2 T canola oil

2 tsp vanilla

dash cinnamon

hemp milk (enough to form pancake consistency)

Cook em' up like pancakes!

We use palm shortening for butter and regular maple syrup. Enjoy!

He didn't eat the Tootsie Pop, he was just asking his favorite question, "this belly sick?" 

We want Jack to grow up experiencing the same thing as other children. We decided that although it would be stressful for us parents, we wanted to take our kids trick-or-treating, door to door. It was exhausting trying to keep all of Jack's candy inside his bag and not in his mouth. But it was a success. We made it through without an episode. I was surprised to find that even though the ingredients were not present on the individual treats, most were clearly marked with allergy information. Which came in handy when Jack started to drool over his treats. I was able to search a little and find some Sponge Bob sweet tarts that contained only sugar, corn starch, guar gum and coloring. I can happily say, our Halloween was pleasant.

 

Support Anyone?

I am starting a little group for mom's and dad's of kids with F.P.I.E.S.

I have been contacted by many mom's around the world, from southern California to Singapore... I would love to bring us all together to share recipes, stories and dealing strategies. I am setting it up and will post a link soon. If you are interested in joining our group, leave a comment with your email and I will be sure to include you.

Icky Milk!

We knew that it was inevitable. J would one day become curious enough to want to try a food that he knew he shouldn't eat.

This is how it went...

We were sitting at the table having dinner as a family and I decided to get up and start clearing some plates. The second that I turned my back to the table, to rinse a plate, I heard a splatter sound. I turned around slowly, afraid for what I might see and there it was, J holding D's cup. He had a puddle of milk on the floor by his chair, milk was all over his chest, dripping from his chin and even on his tongue, which he was sticking out at me saying, "I ee icky mill, keen it".

I grabbed the rag, screamed an obscenity and began scrubbing his tongue, teeth, hands and face. We were all afraid but knew that there was nothing we could do. We brushed the kids teeth, read our books and then put them to bed. J was being SUPER fussy, but he is like that sometimes so we didn't think much of it. We got him to fall asleep and we went to bed ourselves.

About 4 hours later, I heard a strange scream. It was the same scream that I had heard come out of Jack during his last episode, which was over 6 months ago. I ran into his room, smacked on the light switch and there he was, poor baby Jack all covered in puke and diarrhea (sorry to be so graphic).

I immediately called Oakland Children's and they prepared for him. We are so very thankful for the cooperation of all of the doctors and nurses on staff. They were amazing. J was stabilized and they said that he was lucky to only be exposed to a small amount of the milk. His body reacted badly but he didn't go into shock or worse. He did very well. He didn't even flinch while they inserted the IV. He just sat there, all of the nurses had to come and meet the most well behaved little patient they had seen in a long time.

We had become really relaxed about keeping "icky foods" out of Jack's reach. We took his health for granted, it was a great reminder.

We feel so blessed to be home and healthy again. :]

In this video J is pretending to drink from his IV like a straw. He is such a funny guy.

sPaGhEtTi

spaghetti noodles made from corn... $3.95

tomato basil sauce from Trader Joes... $1.89

J twirling spaghetti on his fork and taking a huge slurping bite... PRICELESS

Counting Sheep

Here are some shots of J during his last medical adventure. I blogged about it on my family blog, here. 

He has been f.p.i.e.s. episode free for a quite a while. His G.I. appointment went great, he is off of Prevacid now, and he seems like a normal kiddo. Big-D and I are tempted to start challenging but the G.I. advised us to wait until we are back in Denver when J is 3. I guess I'd better get a little more creative in the kitchen.

Now and Then

J was born with a calm, happy disposition. Now we find ourselves calling him "J the Jerk", under our breath of course.  His doctor's and therapist at National Jewish recorded that he has psychosocial problems that are a result of his disease.

We were busy dealing with his health so we chose to put off everything else. So now we are seeing all of these awful behaviors coming out in peer play situations. It is so difficult to know what to do. We decided that we need to put him back in feeding therapy and psychotherapy. I am writing this entry to advise other parents in this situation to keep your child in ongoing therapies. I am sure that taking care of the problem when it is not a huge PROBLEM is probably the better way to go about it. 

I am happy to say that we have come a long way... and it is not too late to pick up where he left off.

These first few photos were taken in November, before J had any medical help for F.P.I.E.S. 

The last 2 photos are J after only 3 months on his new diet. 

THEN

AND NOW

What's in the BOX?

So, I had been practicing recipes for Jack's birthday cake, when I stumbled upon these beauties at the health food store. Hooray for mixes in a box! I paid $6 for the cake and $4 for the frosting, which isn't too bad for the time and effort it will save. I was excited about the product so I went to their website at www.cherrybrookkitchen.com . They have some great products. Check them out here.

CuPcAkEs!

I have been practicing cake and cupcake recipes because J's birthday is quickly approaching. I totally winged this recipe, and they were great! I just need to perfect the frosting/glaze. I didn't get a photo, because they were eaten before I could get my camera.

I will make them again soon.

Here is how I did it;

Preheat the oven to 350 degrees.

In a large mixing bowl, blend 1/4 cup water, 2 tbs canola oil, and 2 tsp baking powder. Slowly add in 1/2 cup garbanzo bean flour, 1 cup sweet sorghum flour, 1/2 cup white rice flour, 1/2 cup potato starch, 1/2 cup corn starch, 1/3 tbs xantham gum, 1 cup raw sugar, 1 cup honey, 3/4 tsp salt, 1 tsp vanilla, 1/2 cup oil or shortening, 1/2 cup hemp or rice milk, and 1/2 cup pear or apple juice.

Mix until the texture is sticky, but pourable.

Oil a cupcake pan and then fill each cup 3/4 of the way, bake for about 18 minutes (or until they pass the toothpick prick test), and enjoy!

Scream Filled Nights

I am writing this entry to the parents who are considering taking their child off of medication without doctor's consent, and I am writing this to myself, because I know that I will think about taking him off again.

I don't know if anyone goes through this as often as I do, but I am constantly deciding that Jack does not need his acid reflux medication. I HATE giving him medicine, I don't know why! I think that I like to pretend that he doesn't need it. When you do not see the effects of the disease for a while, it is hard to believe that it still exists. Anyway, I quit giving it too him two weeks ago. We decided to watch for changes in his eating habits or behavior. Within a day, J's behavior started to get worse. He was screaming nonstop and he wouldn't sleep through the night. I made excuses like, "he must be really tired", and then when he wouldn't sleep, "he must be overstimulated". As the week went on, the excuses continued, but when he began refusing to eat, I knew that I was in trouble. So we started him on it again. Poor guy, I guess I should listen to the doctors.

Could it be? PaNcAkEs!!!

Today, with the help of D, I made pancakes for the whole family... gluten, egg, dairy, soy, FREE! They were great, you just have to eat them quick or they become chewy. 

J ate 2 whole pancakes!

Here's how I did it;

To make about 10 pancakes;

Put 1 cup brown rice flour, 3 tablespoons tapioca flour, 

1/3 cup potato starch, 1/2 tablespoon sugar, 

1 1/2 tsp baking powder, 1/2 tsp baking soda, 

1/2 tsp salt, and 1/2 tsp xanthan gum into a large mixing bowl.

With a whisk or a fork, stir the dry ingredients.

Now, in a small bowl, mix 3 tsp egg replacer and 

4 tablespoons warm water until the powder is dissolved.

Mix the egg replacer liquid into the bowl with the dry ingredients. 

Mix in 2 cups water and 3 tablespoons canola or safflower oil.

Stir or whisk until well blended and a just a few lumps will remain. Heat a 

griddle or a large, well-oiled skillet over high heat. Spook batter onto skillet 

and cook until the bubbles form. Flip, and continue cooking until golden brown on bottom. Serve immediately with condiments of your choice. 

Enjoy!

Master of the Playground

It is so wonderful to see J playing and feeling just like all of the other kids on the playground. He looks truly satisfied.

Episode Free Easter

We switched out the treats in Jacks' eggs for "J approved" treats. It was a little tricky, but totally worth it!

The Natural Candy Store

Just Tomatoes

J just keeps growing

This is HUGE!

J is up to 28.5 pounds! That is 60% on the growth chart! Feeding him and is quite a chore, I have to mentally track his calorie and fat intake, but I guess it is completely worth it. I can't even believe the progress he has made.

Getting Bigger

J is now a whopping 27 lbs and 35 inches long. We are just amazed at his ability to accept his diet and try new alternative foods. He is talking more, sleeping well and he is more interested in play. It is so much fun to have baby J back.

Hooray for Hemp!

I must say, I am so happy that we found hemp. There are days that J just will not eat, but he will always drink his hemp milk. I used to worry about his calorie intake, but now we can all relax because in his milk alone, he is getting all of his daily requirements. It tastes wonderful and has so many great features, it just does not compare to any other substitute milks.

J now weighs 26 lbs and is 33 inches tall. He eats his cereal, Koala Crisp, with his milk and a spoon now. He looks so grown up. 

Video of F.P.I.E.S.

Here is J's reaction to soy. The video was taken in September 2007. Our pediatrician wanted to see a reaction first hand, Big-D and I struggled with the idea, so I decided to bring my video camera. I am very glad that we decided to go ahead with the challenge, the video has been very helpful in explaining J's reaction.

SHOTS!

Mr. J had his pediatrician appointment yesterday. He has only had 2 rounds of immunizations up until now, because every time that I took him for shots, they sent us away because they thought he was too sick. Because of all the controversy surrounding the shots I was determined to tell her to only give him one at a time, I even planned out how I thought the conversation would go, then I caved and let her go ahead with all of them. Anyway, he got 4! His thighs were sore for the day, but he lived through it.

I got the stats for 21 month old Jack;
25 lbs 7 oz
32 inches tall
He looks healthy and happy.

I left the appointment feeling discouraged because the doctor had never heard of J's condition. I called Dr. Fischler, our savior doctor from Scottsdale, and he said not to expect any doctor to hear of it or even understand it completely. He told me to have a doctor for colds, flu's, and immunizations and to have specialists that J sees regularly.
This sounds good to me.

This is J on the day of his shots!

Strawberry Muffulls

I have the challenge of feeding a toddler on a gluten free, soy free, dairy free, egg free, beef free diet. Today I took out all of the flours, glanced at a basic muffin recipe to see what basic ingredients it had. I then begin the experiment...

Preheat oven to 400 degrees.

Put cupcake liners in the muffin pan.

Put 1-1/2 tsp egg replacer powder and 2 tbs warm water into a mixing bowl. Beat them together until they are not lumpy.

Mix in 1 cup vanilla hemp milk and 1/4 cup safflower oil.

Mix in 1 cup sorghum flour, 1 cup tapioca flour, 1/2 cup organic sugar (evaporated cane juice), 3 tsp baking power, and 1/2 tsp salt, just until moist.

The mixture should be a little lumpy.

Gently mix in 1/2 cup freeze dried strawberries.

Pour batter into the pan.

Bake them for about 28 minutes. They do not rise too much and they will be golden brown on top.

They were delicious. J ate 3 of them in 10 minutes. He is very selective, but he shoved the whole cupcake, one at a time in his mouth. So we named them Strawberry Muffulls.

Yummy!

*oh and just to let you know, you can substitute any of the ingredients but the results may vary

*let me know if you have any questions about any of the ingredients

Heavenly Recipes

A couple of days ago, Big-D and I decided to go grocery shopping for J so that we could give him more foods than just chicken, rice and bananas. We loaded the kids into the double stroller and off we went. The second that we walked through the door, both of the kids started flipping out. D was trying to make a fort out of his side of the stroller to get away from the "nasty fishy smell at the stinky food store" and J would scream every time D or any part of D's sun shade would touch him. Big-D and I looked at each other in desperation, but neither of us had a better plan.
I pulled out my list and it looked impossible, just as I said "screw it all, let's get out of here", I heard a voice say, "this rice bread is better, is there anything else on your list that I can help you with?"
I turned around to see who had said this. It was a sophisticated looking older woman. I was drawn to her, but because she didn't have 'Whole Foods' clothing on, I didn't think I should approach her.
She started to walk off, and amidst the boys screaming and Big-D waiting to leave the store, I followed my inner voice and ran off to talk to her. I yelled out "Miss". I hate that word, but I couldn't think of any better word to say.
Anyway, to make a long story short, Bog-D and the boys cruised the store for over an hour while this woman, who turned out to be the community educator for Whole Foods and an Allergy Cookbook writer, took me through the entire store giving me priceless information. She directed me through the 'Bob's Red Mill' baking goods and told me her "secret combination to allergy free cooking". It was AMAZING!
We are all extremely thankful for this experience. She even gave me her card and personal phone number so that I could call her if I have any questions.
As I get creative in the kitchen, I will post my food inventions on this blog.
Yummy Yummy!

Home Sweet Home

D and Big-D are so happy to have us back and we are so happy to be home. I will soon be able to start experimenting with new recipes for little J. I have ordered a whole bunch of substitute ingredients.

I have somehow figured out a way to prepare quite a few yummy meals with no soy, dairy, gluten, beef, or egg. It really becomes second nature when you do it out of necessity.
I wanted to also thank all of our family and friends for the amazing support that we received while in Denver. It really kept us going. :]

Oak-town baby!

We fly into Oakland tomorrow! We are so glad to be coming home. It has been an amazing trip. We are so gracious to the National Jewish medical team. They did a great job with J.
Our last appointment was with a feeding therapist. J has immature chewing so we have to go back to stage 2 foods consistency and he also has some sort of food trauma due to all the puking. Poor kid, but now with the right tools I know that we will be back on track. During this week, with the help of the doctors, nurses and of course the cafeteria staff, Jack has put on 2 pounds. Yay!
Jack has added a secret weapon to his diet...he now gets 24oz's of Hemp milk daily.
I found it at Whole Foods and I saw that the nutrition that it offers it 4x that of rice milk. National Jewish did a food study with it on Jack, and he passed. He has started sleeping better through the night now, because he is actually feeling full. I would really suggest it to all of you mothers who are not able to give your little one soy or dairy. It beats the pants off of rice milk!

Counting Down

J had a speech therapy appointment. It went well, he will continue therapy when we get home.
We have one appointment today at children's then we will have an exit review tomorrow.
Then it is home sweet home!

Diagnosis!

Today was a great day. We had a conference with the medical team to talk about the week's findings. The diagnosis is;
Food Protein Induced Enterocolitis Syndrome
and
Celiac Disease
and
Acid Reflux Disease

Next week he will be visiting the speech therapist and the feeding therapists at Children's Denver. They think that he may have some muscle tone syndrome that causes him to reject certain foods.

We are so thrilled to have an answer, it is almost surreal.
Also, we are sleeping in the Ronald McDonald house now. It really is an amazing program, so when you see the donation jars, you really should put your change in. :]

To update on J's health, he has lost 3 pounds in the last week, so they have recomended adding oil to his food. They want him to eat all the nasty greasy foods that he is able to eat. We are at 24 pounds right now. The doctors would like him to be 30 pounds. Looks like we have to go get some fries!

With the success of the day we may have an early departure. I sure hope so.

DAY 3

Today has been quite uneventful. They took out J's PH Probe, which we are both happy about. Then they were supposed to do a food challenge. J would not eat the food. He completely refused, gagged and then decided to go to sleep. I am feeling a bit discouraged. The doctors are not sure what to do about it. They know that he is very stubborn and are getting irritated with the situation. I pray that he will eat the food so that his health can improve.
We are feeling homesick and tired.
I am going to go lay down.
I just have to think of the improvements that J will have in the days ahead.
-M

We have arrived!

We are approaching day 3 here at National Jewish. It has been an amazing experience this far. The first day we had a wonderful time meeting the doctors and touring the facility. We are staying in the Children Care Unit of the Pediatric Unit of the hospital/research center. It is a huge unit, but there are only 5 families in the day program. This center is referred to by doctors and patients as the "last chance facility".

The other 4 families here have exhausted the medical care available to them in their home state. It has been an awesome experience to be able to meet these struggling families. We have group therapy, activities and classes.

Each patient is assigned their own doctor, nurse, and therapist, so you are actually receiving the attention and care that you need. Instead of waiting on nurses and doctors, they are constantly waiting for me. Our daily schedule is on the wall in the main room, so I just wake up and go apointment to apointment until "downtime".

The kitchen cooks food for J and it is ALL dairy, soy, gluten and egg free. I feel like I have arrived in heaven. I wish that Big-D and D could come here and we could stay forever. :]

The doctors have viewed the DVD that I made containing J's reaction to soy. They were so impressed that they had me sign a media waver so that they can use it as a teaching tool at seminars and in classrooms. They think that by allowing the doctors and students to view the video that they will be able to better understand what is happening to human body when it is having a severe reaction.

I could go on and on about all of the experiences that I am having but I will just leave you with a J update;

They think that there are multiple problems with J's system. They are looking at colitis, protein intolerance, eosinophilic gastroenteritis and retesting for food allergies.

Today they put a PH Probe up his nose and into his belly. He will have it in for 24 hours. It will tell us if he is having any acid reflux. He is not allowed to touch the wire, so they have his arms in straight casts and he has to have the monitor in a backpack on his back. I have been calling him Buzz Lightyear, just imagine, straight arms and a backpack.

J thanks you for your calls, prayers and get well wishes.

Until next time "to infinity and beyond!"

Weight Watching

While I was in the process of uploading J's photos, I realized that he wore the same jammies for his first Christmas that he wore on his 2nd Christmas. He has been through so much. So far during his illness he was a chubby 103% to a very thin 2% on the pediatric growth chart. I am proud to say that with MAJOR diet modification, now at 19 months old, he has been episode free for almost 4 months and is up to 27 pounds! That is 50% on the growth chart!