One Day at a Time - Living with Eosinophilic Esophagitis

2011-12-03T18:53:00.000-08:00

Taegan seems to be doing well. I think we are done with the food trials for awhile and maybe forever. I don't see a need to scope him if he is acting normal. This is the first time since he was diagnosed in 5-08 that we feel we have a good handle on things and we don't see a lot of testing in our future unless things change.

Both kids are now in preschool. Same teacher but different times. I love his teacher and she is so good to him. He has his separate snacks and he does very well. He is very observant on what he is allergic to and I'm surprised when he knows what food has what allergens in it. He will inform other adults what he can't have. He never tries to sneak food or eat anything he shouldn't.

We love to go four wheeling and the kids are really good at it. Here we are
scouting before the hunt.

The result of the hunt. I was hoping Taegan would like deer since he
is a carnivore but he doesn't like it. I think part of it is mental which I can totally understand.

Recent Family pics

Christmas Tree hunting w/ some friends.

Looks like he passed Wheat !!!

2011-08-14T17:17:00.000-07:00

Bye Bye gluten free food!

I still don't have the biopsy reports but I was able to talk briefly with his doctor from Denver and
he said not to change his diet. His biopsies were normal. I don't really know what normal means I doubt it means a 0 EE count because we were at a 7 to start but I assume we are still around 7.

What a Relief!! I can't say we are totally in the clear yet because he did mention
we would need to do another EGD after he is eating a lot more wheat but that is great news.
I am cleaning out his cupboards and I'm going to start redoing Taegan's recipe book.

Life is so much easier being able to have a wheat thin and some breads. I am using my bread machine a lot and finding many new things he can have and it is exciting. I feel very blessed and I'm so thankful.

If we do go to a gathering like a family reunion or something he still probably can't have anything there. I guess I thought it would open more things up but most things are still containing egg, milk, garlic, nuts, or mustard. We went to a large reunion and he got his plate and I thought there was going to be "something" but no there wasn't and I felt so bad. Of course I always bring him his own food and he handled it very well.

Dads favorite treat is an Oreo so it was very exciting for Taegan to have one.

We've been boating every week and love it.
The kids are getting braver in the water.

Wheat Trial Results....Still Waiting.

2011-07-19T05:53:00.000-07:00

Sorry, I know that some of you are wondering about this and the reason I haven't posted is because I don't have the results yet but am anxiously waiting. Taegan had his scope done 1st of July but we sent the actual biopsies to Denver and it always takes them awhile to get back to me.

I will definitely post the results later. Visually the photos looked good which is a start in the right direction. His doc here performing the scope did say that his tissue seemed a little more fragile than last time. Taegan has been acting totally normal. No vomiting besides the flu and no other symptoms that I have noticed.

I am nervous about cross contamination though. Anything with wheat in it is pretty much cross contaminated with other things. Plus I have found not all companies are following the food labeling law and I have been pretty upset with that. I had purchased something that didn't state anywhere on the label there was milk in it later to find it does have milk in it when I noticed the same exact product in a larger size packaging had milk. I immediately called the company and yes the smaller one also had milk. I told them that they did not label it and I have been stressing over ruining this trial ever since.

I will post results when I know them.

May 2011

2011-05-30T21:00:00.000-07:00

Chris took me to dinner for Mother's Day and grandma watched the kids. Taegan grabbed the bike in her back yard and started riding all by himself. It was a great surprise!

Taegan's Preschool Graduation. Here he is signing his name.

In the middle of preschool Graduation Taegan pushed Kadence off of a playground set and she
split her forhead open and we went to the ER. (2nd time in 5 months for her. She had a concussion earlier)

She received her first stitches. (2 layers)

The Davenport Family had a cabin in Pine Valley over memorial Day Weekend.
It was a lot of fun!

Grandpa made this wagon for the kids. They loved it.

Stress article on quality of Life as caregiver of child with food allergies

2011-05-15T12:19:00.000-07:00

I found this article interesting and true. I feel a lot of anxiety and stress over Taegan's food allergies and most people don't understand and are uneducated about the risks. Even family members who are aware of the disease still don't seem to understand how much work is involved and how going anywhere can be very difficult. Of course I worry most about his life threatening allergies and my biggest fear with Taegan is that he will eat a peanut one day. I was shocked to hear that quality of life for kids with food allergies was worse than those with chronice diseases. Here are some other things I thought were interesting:

Mothers of food allergic children report extremely high levels of stress.

Quality of life studies have been done in the past with food allergies just showing the immense impact it has on daily life and comparing it with other chronic diseases and showing that quality of life for kids with food allergies is much worse, which is understandable because food is just a part of everything we do in our society.

The more common foods you are allergic to the lower quality of life.

56 percent of schools have staff trained to administer allergy-related medications. And then of those carrying Epinephrine or EpiPens, only 54 percent have a plan for use.

We talked to parents of children with food allergies and without. And for parents of children without food allergies , they said they really thought food allergy was an important issue and that something should be done about, and they were really charged with I want something to be done for these kids. But then when you went straight into asking them specifically: Do you think in your school there should be a ban for peanuts? It was a resounding no. I don't want my child not to be able to take a peanut butter and jelly sandwich to school! Do you think in your school, they should have separate tables? The majority again did not agree with this.

The whole article can be read on this site:

http://sesamefree.org/component/content/article/3-newsflash/180-qualitylife.html

Leg Pains Night EE - Heating pad

2011-05-15T11:52:00.001-07:00

I've been meaning to post this for months now! I was given a corn heating pad for Christmas and I found it VERY useful with Taegan's leg aches at night. I wish I had thought of it before. He gets leg aches often at night like most kids with EE. I give him tylenol and I wouldn't want to leave a heating pad on worried that it would get too hot or be on him too long but the corn heating pad is perfect and solves all of those worries. I let my kids pick their own prints and made them both heating pads and they are very popular at my house.

Life lately + Wheat Trial

2011-05-15T11:32:00.000-07:00

Life has been Great Lately!

The weather has been perfect and we have been enjoying the outdoors!

Four Wheeling at Blackrock

Camping at Enterprise Reservoir

Taegan LOVES to ride the ATV. He also helps me gather
our fire wood! He can't get enough.

Taegan has been on wheat for the past 2 months. My life has been so much easier. Before it was really hard to leave the house with everything I had to plan for and pack. It is still a little bit of a pain avoiding his other foods but wheat would be my top choice to add back out of his allergies so lets hope it goes well. It has really made me a huge difference in my daily life and I would say I am less stressed and happier.

EGD #9 - Food Trials

2011-03-17T07:48:00.000-07:00

Taegan had an EGD done in 10-10 in Denver with a count of 7 Eos per high powered field. We decided to do a beef and chicken trial and do another EGD this Feb. His results were 7 Eos per high powered field with a little inflammation. They say beef is more likely to cause a reaction than chicken but adding those meats has opened up more dinner ideas. After talking with Dr. Furuta + Fleicher we are now doing a wheat trial. Our first trial was a wheat trial back in 2008 that we thought he failed but even after he stopped the wheat his Eos kept raising. His blood doesn't show wheat and his skin prick passed wheat in 5-09 but showed up a tiny bit in 10-10.

We are really hoping and praying that he can pass. Looking at all of his pricks and blood it looks like wheat is the only one that even stands a chance so it would be a miracle to us if he can pass this.

Taegan normally bounces back pretty well after his scopes but this time he threw up for a few hours and didn't feel very good.

Cute Cousins

Taegan + Daxton celebrated their 4th birthdays together.
My mom made this cute cake.

Living Without Magazine Article EE -- "Life Without Food"

2011-03-07T19:17:00.001-08:00

Living Without magazine had an article in it called "Life Without Food" that talks about Eosinophilic disorders. I thought a few things were interesting and thought I would post some of the information in the magazine. I find that different doctors give me different statistics, probably because the disease is so new. I will post some of what the article stated.

Eosinophilic esophagitis is a disease that has only gained recognition in the past decade.
Currently, the average gap is 2-4 years between initial onset of symptoms and diagnoses, but that gap may be narrowing as the medical community is becoming more familiar w/ the disease.
Most common trigger foods (though they vary for each individual of course) were: Milk, eggs, wheat, soy, corn, chicken, and beef.
Some research has found that seafood isn't usually a big EGID trigger and that beef,chicken, corn and other grains may be more involved.
EE has been diagnosed in every continent except Africa.
Reports of its prevalence range from 1 in 1,000 people to 1 in 10,000.
The onset of EE symptoms can occur at any age and at any time; however, it's more often diagnosed in childhood and more predominant in males than females.
The rise in EE parallels the rise in other allergic condition, like food allergies, atopic dermatitis and asthma. The etoilogic cause for these conditions is also undetermined.
Research funding is desperately needed if we are to see positive change in the future.

After reading this article I am thankful to live in the time that we do instead of even 50 years ago. I couldn't imagine not having the internet which is a life saver for recipes or the health food stores with the gluten free products and dairy alternatives. I was also surprised that peanut wasn't one of the top trigger foods.

Living without Pantry Substitution Solutions Food Allergies

2011-02-27T08:00:00.000-08:00

I thought this might be helpful to some, especially beginners. To view click on it to enlarge, then click again to zoom in.

Living Without Magazine - Allerbling Allergy bracelet

2011-01-16T15:31:00.000-08:00

Here are a couple things I have found useful. Living Without Magazine. Some recipes won't work for us but a few I can adjust plus it gives me new ideas.

http://www.livingwithout.com/

Allerbling customizable bracelet. I don't want to rely on this alone and trust others judgment but at least it can make people more aware and remember that my son has allergies when I can't always be with him. It only has room though for 5 charms, which most EE kids have more than 5 allergies, but I can punch out more holes. My son thinks the bracelet is cool and wants to wear it.

http://www.allerbling.com/

December 2010

2010-12-22T16:22:00.000-08:00

Taegan's Preschool Class

Family Photos

Christmas Day

The kids love to play in the snow.

Holidays

2010-12-15T12:35:00.000-08:00

Thanksgiving was at our house this year with Chris's side of the family.
It was nice to be able to have both sets of grandparents there.

Getting our Christmas Tree

A tradition we have - looking at Christmas lights on the trailer.

Taegan got his 1st gun, a .22 from Uncle Justin.

I'm starting a tradition where the kids can sleep out by the tree one night.
The lights were a little too bright and so I turned the off which kind of defeated the point but they had fun anyway.

2010-11-29T08:40:00.000-08:00

Taegan's preschool has field trips monthly and this was one
our family went on with him to the Staheli Farm.

Taegan with his best friend in Preschool.

It was warm enough weather we went camping in November.
The kids are at a fun age right now and everyone has fun!

Halloween Pics

Proprietary Ingredients Food Allergies

2010-11-21T09:34:00.000-08:00

If anyone knows of any better way to get ingredient information from companies please let me know.

I am tired of calling companies and having them tell me that the ingredient I am asking about (garlic + mustard) is proprietary information. Is there any way around this?

FOOD ALLERGIES IN SCHOOL

2010-11-21T09:31:00.000-08:00

Here is a helpful and informative link that discusses issues with food allergies in school.

http://esgn.tv/clinets/nsba/food_allergies/

Leg pain at night with EE kids or EGIDS

2010-10-09T13:58:00.000-07:00

I talked with Doc Furuta about Taegan's leg pains that he has at night.
At first I didn't know if Taegan was really having them as often as he said because he would ask for the pink pills (Tylenol) and he likes to eat them so I wondered.When I made him get out of bed and I could visibly see that he couldn't walk because of the pain he was in I took him serious and have brought it up to many doctors who all tell me.

GROWING PAINS

It is NOT Growing pains! It was a relief to hear Doc Furuta say that because I didn't feel it was. Taegan will be curled up in the fetal position in pain. I've massaged whichever leg was hurting him, gave him a heating pad, and Tylenol. He gets them several times a week and it is always in the middle of the night.It is hard because he isn't old enough to describe to me what it feels like or what helps.

The sad news: This is very common in a kid with an EGID. They DON'T KNOW WHY. They've taken Xrays of kids when they had the pain and have done bone scans and other tests and they can't figure it out. They are hearing this complaint more and more.

Furuta said they wonder if the pain is in the joints or if it is inflammation. He asked me if the area was red, warm, or sore to touch.
I don't know. I've never turned on the light and taken a good look, but I will next time.
Furuta said that Tylenol or Motrin seems to help.

Denver Doctor Visit Results

2010-10-09T13:13:00.000-07:00

We are back from our trip from Denver and thought we would share our results.
Our trip took 6 days.
15 hours between 3 different hospitals.
The first thing we did was an EGD to get an idea what condition
Taegan's esophagus was in. The visual part looked great.
Later we got the biopsies and he isn't totally clean, but not bad either. He has 7 eosinophils per high power field. A healthy person would have 0 since eosinophils shouldn't be in the esophagus. I think Taegan has had 50 before.
It was pretty good news considering we are controlling his EE by diet only.

Taegan had fun making new friends while waiting for visits.

I had packed plenty of new toys to fill his bag with during the different visits and that really
helped keep him busy while we waited.

Getting in our jumpsuits to take Taegan back for his EGD.

After his EGD. Even though we went back with him he still panicked and screamed and tried to get away. He said several times this trip to not let the blues guys get him, he doesn't like the blue guys. It is hard to physically hold your child down while they are scared to death and strap them to a table but there really isn't another option.

Skin Prick Testing
The Most important reason that we go to Denver.
We talked with Furuta about other locations closer to home.
Many people have asked why not go to Primary Children's Hospital which would so much closer and easier. Furuta is one of the top GI Docs for EE if not the top. He would be willing to
work with the GI docs at Primary, but it is the allergy part he won't.
The main reason he transferred to Denver was because of the allergists there.
They do the prick a little different than most which we've seen ourselves. Some roll 5 at a time and there are other differences as well. So...since the allergy part is a major key that is why we will continue to travel 1400 miles every year.

I was pretty proud of Taegan. He cried when doing the pricks, blood draws, and EGD. He had to have more than one on some tests so he knew what was coming and he would still cry while they did it but he didn't put up any sort of fight going into the room or getting ready for the procedure. He would maybe get teary eyed but he was very brave!

Results:
We were hoping SO BAD to add wheat! Over a year ago he tested fine for wheat with the prick and blood and we could have done a trial but his EE count was too high so we were hoping we could do that now. His wheat tested positive this prick. Not on the blood but a little on the prick. Of course it wasn't going to be this easy right? I really shouldn't complain because other kids are so much worse but it is still something we hope for daily.

Chicken came out clean which was a small reaction last year. Beef was a small last year and was tiny this year. So they want us to add beef and chicken back in and we will food trial and scope in 4 months. If it comes back clean great, if not they will assume it is beef. I myself would choose to do one food at a time so we know for sure but I will follow what the docs recommend since that is what I am paying them for. If we get all that done with and he is clean we can do wheat next. I realize this could take another year or two. It was 1 1/2 years ago we wanted to do wheat and never were able to. Our main problem has been...can't do a food trial unless he is clean enough.

His peanut blood results more than doubled from last year. His egg, milk, garlic, and nuts were all large. Because he can't have dairy and doesn't consume a lot of Calcium I need to put him on calcium and Vitamin D (to help absorb the calcium). I was told to give him a tums w/ Vit D chewy.

We are starting him on asthma medication also. We don't know for sure if he has asthma. He is still a little young to cooperate with the tests they need to do but he does have some of the symptoms. Problem is there are 3 possibilities for his symptoms.
Asthma, Reflux, and Allergies.
He coughs a lot at night and when he runs around, gets in cold weather, and eats cold things.
We did a chest X ray and it did show signs of asthma, but the problem is we didn't have a baseline and he was sick at the time so we will do a chest X ray in 6 weeks if he isn't sick and hopefully see.
We doubled us his dose of prevacid. 15mg morning and night if it is refulx.
We are putting in on Zyrtec because is tested positive for cats and dogs and was very allergic to 3 weeds where we live.

Hopefully his cough will stop and he will sleep better. Until they find out the leg issue I doubt that will go away though. I found out more about the nightly leg aches but will do a separate post for that because I think it's important.

Our house is hoping for some better sleep soon! It has been 3 1/2 years of getting up 3-8 times a night and we are all tired! I feel like I'm running on empty the moment I get out of bed because I'm so tired. Trying to do daily tasks plus learning new ways to cook Taegan's food and taking the time to cook it while the kids make messes and fight with each other is taking it's toll. It is hard to do this all alone. I wish Chris was home more to help.

We saw the psychiatrist again which will make you feel like you need help when you didn't think you did. Having kids with a disease puts more stress on a marriage and causes more problems all the way around.
I realize that EE is nothing compared to many other diseases and I am grateful because it could always be worse. I know how hard this is on us and I don't know if I could handle worse. I have a lot of respect for those that do.

We did get to have a little fun while we were there. The Zoo is great because we can go for free through the hospitals.

Taegan made another friend his same age and we hung out awhile.

We saw many pretty places on the drive and wish we could have a chance
to spend more time someday.

New Foods

2010-09-19T17:32:00.000-07:00

Thanks to another EE mother I was told about Daiya Cheese!
I immediately hunted it down. I can only get shredded here, but I'm trying to get them to carry the block so we will see what happens. This may seem small but I could cry over it. Expanding his diet is what we want most, so this is great.

Taegan had his first grilled cheese, pizza, and cal-zone.

I substituted the flour for safe flour but this recipe turned out really well. I love to use the mini

muffin tins to freeze and stock up.

http://www.cooks.com/rec/view/0,176,131177-253194,00.html

This is an easy and quick recipe that you can MICROWAVE. Just substitute the flour for safe flour. Rice flour works well. I also like how it doesn't make a huge batch. I cooked it in a 7oz corningware dish. The next photo I poured part of the batter into a silicone cupcake and microwaved it. It's not the best, but it's not bad either. Adding safe choc chips helps and not overcooking it.

http://www.eons.com/groups/topic/2217681-5-Minute-Eggless-Cake-in-a-Mug

Cinnamon Rolls. I have never made cinnamon rolls in my life. I was invited over to families and they were making cinnamon rolls so I decided I better learn how to make Taegan some. They turned out better than I was expecting. Of course I had to adjust the recipe for his substitutes but both my kids loved them. Because Taegan can have sugar, desserts are definitely the easiest thing for me to cook him.

http://www.glutenfreehomemaker.com/2008/12/gluten-free-cinnamon-rolls.html

Kadence eats a lot of what Taegan eats. She is kind of deprived of food also, mostly her snacks. She eats her own food when she is in her high chair but if we go to town or to church I only pack what is safe for Taegan since they are so close in age and share everything.
I find it hard to come up with new ideas for Taegan that he will eat. Cooking for him takes so much time. Even when we have similar things for dinner like pizza or meatloaf I cook ours, and his. It takes forever and the kids are usually driving me crazy. It makes a big mess in the kitchen and then I have a ton of dishes since we can't share any of the same utensils or measuring cups.
I feel like there isn't enough TIME. I spend a lot of time online searching blogs and recipes and seeing if I can adapt.

I got very bored and desperate enough with Chris working so much overtime and not being home that I took the kids camping by myself. Probably not something I would recommend.
It was o.k. but we were all dead tired since my kids took turns waking up all night long every 30 minutes and then refusing to nap during the day. It was also hard to be in the trailer cooking something or getting beds ready when they want to be outside playing. I could have used another hand for sure, and I don't know if I will ever do it again alone unless they are older.

This summer has mostly been spent boating. We love boating and Chris had talked about getting a Pontoon boat. We found a great deal and thought we would try it out and then sell it.
That is exactly what we did. The pontoon was fun for the amount of people we could take, but it
is a little slow.

This trip we called the "Floating Nursery." We had 8 kids from 2-6. A lot to handle around water. It helped that we had 6 adults.

Taegan had his first sleepover with Daxton. Since Taegan was drinking his "milk" from a bottle Daxton wanted that also.

Family Reunion Camping Pine Valley. We were suppose to guess when the Ice block melted but
too many kids got to it first, including Kadence.

Taegan and Daxton loved to swim in the lake this year.

Kadence turned 2. She looks so innocent but she is a handful whining all the time!

Taegan started Pre-School. I was worried about it at first that he wouldn't go without me because that is how he is but it went great. Of course I found a teacher willing to work with his allergies. I pack him separate snacks and she has an Epi and keeps an eye on him. Even though preschool is only 2 hours Food is involved and I can't believe how much stress I had in the beginning. I guess maybe because this is the first time in his life I haven't been there or had the control. I met with his teacher a few times alone and we went over a lot of things. So many people don't understand how much goes into having food allergies.

So far he is loving preschool and so are we!

We are heading to Denver soon to see where Teagan's health is at.

It's been awhile

2010-05-24T19:34:00.000-07:00

Here are the boys at Easter.

No Daxton didn't give Taegan the black eye. Daxton's little sister did.
She gave herself one the next day so I guess we're even.

Kadence got some sunglasses for Easter because Taegan loves his so much.

Both the kids love to see their new cousin Oaklee.

We've loved the cooler than average weather here.

Chris + the kids at Trevor's Wedding.

Taegan had to have tubes put in his ears again. I had no clue this was coming but both ears had fluid again and they were mostly concerned with his speech since these are critical learning years. The procedure is simple but I hate the stress it puts on him. He remembers what is going to happen. He kept saying,"I don't like the blue guys." "I don't want a shot." It helps to have grandma come with us. He would say ," Grandma don't let them take me." This was his 9th time being put under in less than 2 years. He just bawled when they took him back and cried for mom and grandma. Even days later out of the blue he will say , "I don't like those blue guys."

I have to label all of Taegans food to keep it separate and not cross contaminated. Also to remember what is what, all of the different types of flours and things can become confusing if I don't. He'll say, " that is mine, it has a T on it." I don't know if any of you have a good mayo recipe with no eggs or mustard. The mayo I made him is pretty nasty. The only thing he eats it on is a sandwich with his ketchup...I guess kind of like fry sauce.

I love Jello and I tried to make it with other things and it didn't work. I found that if I got coconut milk cold, then whipped it up it was similar texture to cool whip and I also found I can make it work with Jello. Jello has changed it's ingredients recently because in the past I couldn't find one without milk. Today I found the sugar free Jello brand cheesecake doesn't have milk or soy. The sugar free instant Chocolate does have soy but Taegan can have soy so that works for us. The top is a pic of some choc pudding using coconut milk. Sometimes I have to work with it after it has sat in the fridge for awhile and I may have to thin it a little by adding soy or rice milk but it works.

I have a pumpkin pie recipe you use jello for and I adapted it for Taegan and I thought it turned out pretty good. I did 2 cups of cold whipped coconut milk. 1 package of sugar free cheesecake jello. 1/2 C pumpkin pie filling (It calls for canned pumpkin but i didn't have it). 1/4 tsp ground nutmeg. 1/2 tsp cinnamon. I did need to thin it after it set up. If you used canned pumpkin you might need to add more spices.

I am wishing that I had gone to cooking school. I don't love cooking mostly because it takes time and a lot of clean up after but since I have to cook so much of Taegans things I wish I knew more.

We are looking at going to Denver this fall. I am interested in finding out if any of his allergies have changed. Adding even one allergy back in would be very helpful. They told us last year we could add wheat but we haven't since we've had a hard time keeping him clean and there is a good chance that would confuse us. BUT I'm hoping we could add wheat back in and interested to find out.

I have noticed Taegan's pays very close attention to smells even on food he knows he can't have he'll ask to smell it. He also loves smelling non food items. He is very good at not sneaking food he knows he can't have. For that I am very grateful because Kadence has food he can't have like her yogurt or string cheese. Taegan will sometimes say ,"Can I have that?" and I'll say, "no it will hurt your tummy." Then he'll ask, "what can I have?" I'm glad that we can move on and get him something he can have and he doesn't get upset about it. I'm doubting it will always be this easy but I guess we will see.
For the most part though they eat many similar foods. Anything I make Taegan, especially his muffins, she eats along with him. If I take snacks with me when I'm going somewhere I try to take what they can both have.

Food INC

2010-03-30T08:46:00.001-07:00

I think everyone in America should see this movie. It's no wonder we are having so many issues. I wonder if this is part of the EE problem and many other problems.

EE - problems sleeping at night. HELP

2010-03-30T08:22:00.000-07:00

I am wondering if other EE kids have problems at night or if it just my kid and it might not have anything to do with EE. I have been getting up most nights several times a night since Taegan was born. He is now 3 and he screams until I go into his room and then he will usually go back down and he might do it again in 30 minutes...or 3 hours. I'm very tired of getting up several times a night but I don't know what to do about it. If he is in pain then I feel bad and don't want to ignore him...but I still don't know how to help him. He has started complaining of legs aches the past couple of months and I can see by the way he is acting or unable to walk on it that it does hurt. But the leg aches are a couple times a week not a couple times a night so I don't know what the other is. If anyone has similar issues or have any suggestions please let me know.

Kadence loves to put on Taegan's underwear.

Taegan thinks if he is outside he can pee wherever he wants. I guess he considers the garage as outside.

It is cobblestone season again so Chris is back at it.

Us and our projects.

Taegan decided to put vaseline in Kadence's hair. It took a couple days to come out.

EGD results

2010-02-21T15:11:00.000-08:00

Taegan had another EGD in January.

Brandy was able to come this time. She brought some of Daxton's toys and Taegan had plenty to distract him.

We were moved to the new building which now has a screaming room so that was nice for the other patients because when Taegan wakes up and I'm not there he screams until they come and get me.

The results showed that eosinophils were back but not as bad as they have been in the past. It could also be from environmental allergens. We will wait and see how he is doing in another 3-6 months. Some kids show several symptoms but with us vomiting is the only way we can tell. Even then, he has had a high eosinophil count before and wasn't vomiting.

Playing with chicks at Grandma's House

2009-12-22T06:56:00.001-08:00

We try to take family pics once a year. Taegan decided to give himself his first hair cut 5 minutes before we walked out the door. I can't say it was entirely his fault. Chris had just finished shaving his face and he left the shaver on the bathroom counter. He saw Taegan had grabbed the shaver but he couldn't stop him in time. I was a little bugged but it was pretty funny. I ended up having to shave more of his hair to blend it better.

This year we decided to be a little more festive because Taegan is getting older. We put up house lights for the 1st time and Taegan helped and drank hot apple cider. We also went and cut down our first real Christmas Tree.

Brandy made these for the boys and Taegan has enjoyed wearing them around.Taegan has been doing very well potty training. This seat obviously didn't work for us because Taegan kept putting it on his head and calling it his hat.

In Parowan visiting grandparents and playing in the snow.

Kadence was more interested in the snow buffet than sledding, so she sat in her sled and dipped her hands over and over.

It is our tradition to look at lights on the trailer. The kids did better than I thought they would and stayed on the trailer the whole time.

Grandma
Aunt Kamrie

UPDATE ON TAEGAN

He went off of Flovent in August and Started throwing up again the first part of December. He is scheduled for an EGD in January. He still wakes up screaming most nights. I have been cooking him new things. Story of my life. I'm not really a cook but I'm learning. It is definitely time consuming. Some things turn out o.k. Others like these cookies didn't work too well. He loves meat. Since he can't have any beef of chicken he eats a lot of pork and turkey. He asks for meat breakfast, lunch, and dinner.

Biscuits and gravy.Luckily he likes muffins. I make him banana bread muffins and Zucchini muffins frequently and freeze them. He dips them in applesauce. Most breads are dry and fall apart but these hold together and taste o.k.

The Best Time of Year

2009-11-13T13:37:00.000-08:00

Muzzleloading in Sept. We are so lucky to live in a beautiful place with mountains close by. I didn't get out in the hills as much as I would like but I guess that is what happens when you have kids.

Getting Ready for the Rifle Hunt. Taegan loved helping us reload.

The rifle hunt was a big dissapointment this year. We saw a lot of does and fawns and a few little bucks. It was nice to spend some time together out in the hills.

For Halloween we went to G + G Michels. Taegan loved riding on the lawnmower w/ grandpa and seeing all of the deer in the backyard.

We stayed at a Cabin in Pine Valley for a couple of days. The boys loved it and had plenty of room to run around.

Flovent Results

2009-09-12T16:49:00.001-07:00

I can see that many people are searching online about Flovent. I did the same thing when I was trying to decide whether to use it or not but after learning how bad his esophagus was in May I didn't feel like I had a choice. I still don't know a lot about it but we did put Taegan on it for 2- 3 months and here are the results.

Here is a pic of Taegan's esophagus back in May.

Here is a pic of his esophagus when we did his 6th EGD in August.

As you can see the Flovent did it's job. He didn't have any eosinophils. I don't know exactly what to think about it. I'm glad his esophagus got a break but after talking to both of his GI's we have taken him off of flovent and the eosinophils will just return so I am assuming in a few months I will be back to where I was in May. I guess we will see.

Here is a pic of his stomach. Even though we took him off a prevacid after doing the PH probe after seeing the amount of bile in his stomach his doc said to put him back on it because his stomach looked irritated. Even while being on Flovent Taegan did still throw up on AVG of once a week for the 2-3 months and he tells me his tummy hurts daily. Most of the time it is right after he ate. A few times he would throw up right after telling me his stomach hurts.

He is getting old enough now (almost 2 1/2) that he is starting to realize what is going to happen to him. He fought me for awhile and cried and didn't want to put his gown on. The cute nurses gave him some stickers to distract him.

Besides EE life .....

Kadence turned 1 and weighs 17 lbs. I didn't even attempt to take her in for pictures because she is very antisocial to strangers and I knew she wouldn't cooperate at all. So I attempted a couple times to do some myself and she didn't cooperate w/ me either but here they are.

Here is Brandy, Daxton, Taegan, and Gina. Gina is a wildwoman on a tube.

Learning to wakeboard. I can't decide if it's worth being so sore afterward.
I'm starting to feel old.

We'be been camping a couple more times. I don't know what we're going to do all winter. Hopefully we'll get more sleep and rest up for next summer.

Drinking out of Grandma's empty coke cans.

More Heat Escapes

2009-07-26T14:50:00.000-07:00

Boating at Sand Hollow. The kids did better than I thought they would do but in 105 degrees didn't want to get wet.

We went camping at Panguitch Lake. It was nice to be in a good temperature but we traded that for lack of sleep! Camping with kids.... I hope they get use to it.

Taegan crying because he doesn't want to share the swing.

Aaron + Brandy came visited for a day w/ us. I'm so glad Brandy and I have kids so close. They entertain each other but also get into more trouble when they are together.

Mustard

2009-07-14T14:04:00.000-07:00

I just had to put on here a little bit about mustard. Taegan's blood test results came back and they confirmed it was mustard that caused his lip to swell. According to the numbers mustard is the 2nd highest allergy to him behind peanut. I had never thought about mustard and after looking online a little I was surprised at how common it was. Not that all of the info online is 100% accurate but from what I found most people with food allergies are allergic to mustard and it is the 4th most common food allergy. I was surprised and thought if this could help anyone else I would post it but to most of you it is probably useless. I also wonder why none of his docs mentioned it to me in the last year. So on top of worrying about garlic in any spice or flavoring I guess I can add mustard to the list.

Besides mustard here are some pics of what we have been doing lately.

Of course the water parks. It's been so hot we've tried to get out in the mountains more.

At Baker

At Enterprise Resevoir fishing and catching frogs.

Taegan is enjoying dragging Kadence around like this. She likes it to. No wonder babies have bald spots.

Chris installed a Cobblestone Job. Taegan is becoming a very good helper.
Can't miss the Fireworks.

Panguitch Lake

PH Probe

2009-06-20T13:38:00.001-07:00

I had to post some other pics first.

We were working on the backyard and Brandy + her kids came over to "help."
The boys and their shovels.

11:30 One Night last week. I had already been up w/ Taegan and he cried again and I took my time getting to him. He had accidentally closed the door and the AC was on and he couldn't open it so he was throwing up in the dark. I felt guilty after for not rushing to him when I heard him crying. He cries a lot at night and most of the time I don't know why. I shouldn't have carpet in his room.

PH Probe
Don't let the pics fool you. It wasn't all fun and games. I was glad Chris was home because I felt sick watching this being done in the hospital.

These adult wrist braces were the best they could do. We went to Wal-mart and bought different ones that worked better.

We were told if he puked it might move the tube out of position so the test would be over and we needed to tube in for 24 hrs. That was a big concern to us since he pukes and gags easily. He didn't eat a lot that day and pretty much only ate liquides. He refused most of his bottles. We tried really soft textures and the first bite he almost threw up. He had extra popsicles that day.

By the afternoon he was so sick of the arm braces being on we told him if we took them off he couldn't touch his nose. I was shocked at how well he did. He knew he didn't want those back on. We heard "nose" all day long. He was so good he didn't even attempt to itch it himself and he let us do it.

The worst part of this was when Taegan would try to sleep. He tosses and turns a lot so I watched him during his nap and had to continually move the computer and chord. When it was time for bed that night I decided to put it in w/ his zip up PJs and that worked so much better. We didn't have to worry about the chord getting wrapped and pulled out but he was up every 10 minutes crying because he was tossing and turning and we put the arm braces back on because we didn't trust him in his sleep so no one got much sleep.

We pulled it out ourselves at home and were told it hurt coming out. That was nothing compared to the dang tape. He had quite a bit of tape on his body, all down his back, neck, face. He bled in some parts and screamed a lot.

I'm SO glad this test is over with. I haven't heard from Denver but his Pediatrician said that he doesn't have any reflux so we are now 100% it is EE. We were 99% before but this was one last test to rule out other factors. Hopefully I can take him off of his acid medication he had been on for 1 1/2 yrs.

Allergic Reaction

2009-05-25T14:38:00.000-07:00

We decided to go have dinner at Oak Grove Sun night. We had just finished cooking and started eating dinner when Taegan said "lip" a couple of times. I noticed it was starting to swell up so we threw everything into the car and headed back to St.George. It took us 50 min. to get there but we got back a little quicker.

We have no clue what he reacted to. All of the food he had should be safe and he has had it all before. The nurse at the clinic thinks it was a strawberry even though he has had them many times and has passed pricks to them. I will talk to Taegan's allergist and see what his opinion is. After talking to our allergist his opinion would be mustard so we will prick him for that and see.

Our Colorado Trip

2009-05-14T19:49:00.000-07:00

Where to begin....
Since we had Taegan on the drive we broke it up and took 2 days to get there. We stayed in Grand Junction one night each way.

Flying a kite in Grand Junction

In the Eisenhower tunnel.

On our way there he puked all over himself in the car seat. We quickly pulled off the freeway and changed his clothes. On our way home he did the same thing.That use to happen a lot but has not happened in awhile.

It is hard to travel with kids with food allergies because you have to bring a lot of food from home with you and the cooler and you're not sure what you are going to find along the way.

We were pleased with the staff at Colorado. We dealt with National Jewish and The Children's Hospital. We met with the doctors individually and together. We were able to see the GI, Nutritionist, Allergist, Feeding Therapist, Dermatologist, and Psychiatrist. We had 2-3 appointments with each of these so we feel we were really able to get some quality time in.

Taegan was also able to participate in an allergenic intestinal disease study where they collected pieces of tissue from the intestines. We felt fortunate we were able to help in any way we could and hope that they are able to find less invasive testing.

This was Taegan'a 5th EGD since being diagnosed last year. It has been a long year with many doc appointments and testing. Just entering a doc's office he starts crying because he is worried they will hurt him. Sometimes they do, sometimes they don't. He would say "bye bye" every time we entered someones room and start crying. It makes me feel so bad because I can't really explain to him what is going to be done.

The Children's Hospital was great. It was different than any hospital I had seen, no wonder it is rated in the top 10. Everyone that entered had to sanitize their hands and when you went into different areas you had to sanitize them again. My type of hospital. I'm kind of a germaphobe. You had to wear name tags w/ a photo. It reminded me more of an airport. Seeing so many kids that are extremely ill makes you grateful for what you have.

I knew some hospitals let you go back with your child when they were put out and this was one of them. I had looked forward to having the chance of holding him. As most things in life, it didn't turn out the way I had hoped. Taegan panicked with all of the equipment and docs around him and I had to physically restrain him along with a few other nurses. I hate times like these. He's only 2 and you can't really explain to a 2 year old what is happening. He's just scared to death.

As soon as the doc came to consult with us and showed me the slides I knew it wasn't good. The white dots are patches of eosinophils that have gathered in his esophagus from eating foods he is allergic to over time. I knew his biopsies would be bad which was the reason we came to Denver but I wasn't expecting them to be that bad. The patches ran the entire length of the esophagus. There shouldn't be any eosinophils in the esophagus. He is still throwing up once in awhile but I'm surprised after seeing these he's not throwing up more.
This pic is of his scope last Jan which was bad. You can see how much worse his esophagus has became in the last 4 months.

After his EGD we had the weekend off to wait for results and more testing the next week. We went to the Denver Zoo and the Botanical Gardens.

Taegan really enjoyed having Chris around for so long. Most mornings we found Chris's shoes like this.

More prick testing.

Waiting for an appointment
We were told after we arrived that they wanted to do a PH probe. I had never heard of it and it didn't sound fun. Not that it is a huge deal but for a 2 year old who doesn't know what is going on and is sick of being poked putting a tube down his nose and staying in the hospital for 24 hours was something I was dreading. We called our hospital back and home and they also that the ph probe and that is IN-network with our insurance where National Jewish isn't so we made the decision to do it at home. We will most likely be doing that in June.

The way dads do diapers.

End Results:

We had a very memorable experience at National Jewish + Children's. It is tiring and an emotional roller coaster at times but the staff is great and willing to help and answer any questions. We found out Taegan's biopsy results were worse than they have ever been. His counts were high and his esophagus was very inflamed. That could be part of his texture issues and the reason he's choking and throwing up food. Since leaving he has started throwing up more. He tested positive to foods he had passed before. Beef, chicken, and lamb. The plan now is to eliminate those foods (which he wasn't having much of anyway because he couldn't handle texture) and scope in 2 months. It would be a miracle if that worked but I'm betting it's not that easy. I have a feeling it is more than that but I guess we will see.
We are also working on his texture issues. We have to back up to move forward because he has missed some important steps in learning how to chew and swallow his food correctly. We will give him more pureed for for awhile and slowly work towards the more textured foods.
We are also starting Flovent for the next month or two to help heal his esophagus. We were finally trained and given Epipens. They couldn't believe with his peanut numbers no one had given us one before. We were hoping to pass garlic but he reacted just a big as before. Garlic is one of the hardest things for us. You would think it would be milk or eggs but garlic is in so many things and i have substitutes for milk and eggs.

TOGETHER AGAIN

My mom volunteered to watch Kadence while we were gone. It was nice to have some time with Taegan alone and it was nice to not have to worry about Kadence either. I did miss kissing all over her but she was in good hands. Thanks mom.

2009-04-23T17:10:00.000-07:00

The Wagon...again. The 5th time being here in less than a year.

Kadence was so good as usual.

Why have one when you can have two?

Adenoids, Tubes + Tonsils

2009-04-20T12:58:00.001-07:00

I took Taegan to the ENT Doc because his pediatrician thought he may have sleep apnea because he gets up several times a night. Sometimes he is screaming sometimes he just walks into my room. One of the main causes for sleep apnea in kids this age are enlarged adenoids or tonsils. So we went to the ENT and he couldn't tell off of the Xrays so he stuck a lighted camera on a tube up his nose and he looked around. It was a bad experience as I held him down while he was screaming.

Anyway, they said his adenoids were taking up 90% of his room and they could see fluid in his ears also so he needs tubes. I scheduled a date for surgery ASAP because we are going to Colorado in less than a month. If there was any reason to take the tonsils they said they would also take those. I am hoping this makes a difference in his sleeping because he is worse than Kadence and I am Tired. We are also thinking he might pronunciate better because the doc said what he is hearing is like us talking under water.

Taegan also started puking again. I have no clue why. On Sunday he woke up and puked corn in his bed that he consumed 20 hours earlier. Then he threw up flem, then his dinner. He was refusing to eat pretty much everything for breakfast except Rice Cream. We went to church and he threw up his juice in sacrament. I came home after sacrament and he threw up more juice. He still refused to eat so he had Rice cream for dinner and threw that up less than an hour later.

Today....he drank his formula. Good news. 4 hours later he threw it up....refused to eat again and ate a popsicle and went down for his afternoon nap. Last time this happened he puked daily for a week. I hope this stops before his surgery or it might be horrible and I can't see him eating anything, and if they remove his tonsils that will hurt even more.

As much as I'm dreading Colorado....I am looking forward to hopefully having some answers for days like these.

Kids are full of surprises

2009-03-29T20:57:00.000-07:00

I had to put this on because I thought it was kind of funny and because I just happened to have my camera with me. Chris and I have always enjoyed looking at camp trailers dreaming of what we might have some day. Taegan also loves looking at trailers and we drive by a trailer lot constantly on our way home and he always says " trailer." So...we told him we would take him to look at some trailers. This was Saturday afternoon and the place was closed but they always leave a few open. So....we went looking. Chris had Kadence and he was ahead of me looking at trailers and I was following him. He had gone into the next trailer and so I was the only one in this specific trailer and I went to catch up ahead and he asked me where Taegan was. I told him..."I thought he was with you." I kind of panicked and called his name and Chris said he was probably still in the trailer I was in. I had just walked through and I didn't see Taegan. How can you miss him in a 20' trailer? I thought he was on the lot somewhere.

I went back to the trailer I had just been in and the door was locked. We heard little footsteps running around in it. Trailer locks are different than house locks and I'm kind of surprised he knew just what to do. He's never been shown. Well.....we tried to talk him into unlocking it and he tried many times but couldn't get it. Luckily it wasn't too hot and Taegan didn't seem upset. We tried to find a way in and weren't successful. Chris called someone and they said they would send someone at the car dealership next door down. They came down but couldn't get their keys to work.
I did end up getting him out by going under a cubby hole and lifting up a board that held a bunk bed mattress and Taegan crawled through it and out.
Kids.....you never know what they are going to do next.

Taegan 2

2009-03-21T14:53:00.000-07:00

WHERE DID MY BABY GO?

1 YR

I can't believe how fast time flies. Taegan is 2 yrs. old. This last year has been crazy. He was diagnosed in May with EE and this coming May we are going to Colorado for further help because his doc here said he was in over his head. We are anxious to find out more information and hoping we don't have to start over and eliminate everything from his diet. Most people would love to take a week trip but I am not looking forward to it.

FISHING

2009-03-21T14:30:00.000-07:00

I love to fish. But.....fishing with kids, or doing anything with kids can sure change my love for something. I guess I should say...I love to fish with people capable of wiping their own butts.

Chris has been working a lot lately so Brandy and Aaron were nice enough to invite me along on their fishing trip.

The girls kind of were stuck in the playpen beating each other up.

Aaron is really cute with Taegan.
I was so happy to catch a fish using Taegan's dinky pole and what a MONSTER! Pretty sad when I'm desperate enough to steal a 2 year olds pole from him. (But i was letting Aaron borrow mine.) I wanted Taegan to come closer to get a picture but he was afraid of the fish.

Kadence 6 months

2009-02-23T19:01:00.000-08:00

NAET ?

2009-02-16T20:53:00.000-08:00

I have had a couple people recommend I check out NAET treatment. We just started the treatment and it definitely seems weird but I was wondering if anyone else has had any experience with this and what their opinions were. I figure it can't hurt because the worst thing that can happen is I am wasting my money. Even if it helps a little bit it is worth it.

The past few years

2009-02-03T14:12:00.000-08:00

Our life isn’t just “EE” even though sometimes it seems like it. Before we had kids our logo was work hard play hard. Now it seems we only have time to work hard. We bought a house that wasn’t finished yet so we have been finishing it the last few years. We always have some sort of project going. I don't think we would know what to do with ourselves if we actually had some spare time. We like to do things ourselves. Why pay somebody when you can do it yourself, take 10 times as long and get 10 times as frustrated. Chris amazes me with the amount of things he is able to do. He is also very patient in teaching me how to use his tools. I should also say he's pretty trusting to let me use his tools! I love learning how a house is built but along with that come a few things I hate like sanding mud.

Before we had kids we spent the winters snowboarding and the summers hunting. I have been a dedicated hunter the last 9 years so we have been able to hunt archery, muzzleloader, and rifle. We also love to find new areas with the GPS and 4 wheeler. Those days are few and far between now that we have kids but hopefully we will have more time when they are older.

2009-02-03T14:06:00.001-08:00

Thanks

2009-01-29T15:49:00.000-08:00

I just wanted to say thanks for everyone's helpful comments, encouragement, and support.

I think some prayers have been answered lately. For past few weeks Taegan has been drinking his formula SO GOOD! He has gained some more weight and I haven't had to battle him. It was overnight. He woke up one day and was hungry and decided he was going to eat. Of course I may be saying a different story tomorrow but for now he is eating good.

Flovent ?

2009-01-20T12:22:00.000-08:00

We went and had Taegan pricked again hoping to find some answers after the failure on the last scope. He actually passed more foods than the first time. He passed milk, wheat, and soy. Egg and Peanut were bad and we didnt' have room to test everything but he hasn't developed anything new that we know of. I also got his RAST test results. Peanut was extremely high, egg was moderate, Milk was a low, and wheat was clinical relevance undetermined. The docs say a negative is pretty much a negative where a positive isn't as accurate. But I've also read with EE the positive foods causing it can be missed on these tests. The doc said to go ahead and give him soy since he passed it prick and RAST.

On one hand these results are good but then what is causing his EE? I've heard environmental allergies can cause EE but the allergy doc said he was too young to test for that. Taegan did have a clean scope back in August and I haven't changed his foods since then except for the wheat trial. The allergy doc said to give him flovent. I worry about pumping steroids into my 22 month old, about the long term use and the side effects. But then what is better, the side effects of the medication of the side effects of his EE. The allergy doc says it is ok to use it everyday but Taegan's GI doc doesn't seem to be as big as a fan. He says if I use it I should only have him it on for 2-3 months and as soon as he is off the EE will come right back. S0 I don't know what to do. Here we go again with every Doc having a different opinion. I'm hoping the Colorado Clinic can help me.

If anyone has an info they would like to share on flovent please leave a comment.

Taegan pushing Kadence in the "doll" stroller

Kadence on Taegan's motorcycle he got for Christmas

Taegan " helping" Chris with the sink

Taegan in Chris's work boots

Frustrated

2009-01-16T09:27:00.000-08:00

Well, Taegan had his 4th scope today. We were expecting a clear scope so we could start a food trial. His results weren't good and were actually worse than the results from his failure on the wheat trial. S0 we won't be starting any food trials until we figure out what he is allergic to now and I have a million questions as usual. Did he develop another allergy we don't know about? Am I giving him something that I'm not aware of? Was he even allergic to wheat? We just took a few steps backward which I think is common with this disease.

Now we will have to eliminate more of the foods which I was already giving him and keep shooting for a clean scope. I am also going back to the allergy doc to do more skin prick testing to see if anything has changed since last May.

Taegan's Doc gave me some recent information on a 14 yr. study of EE. Many ask me if he will grow out of this. Out of 562 patients studied, 11 had complete resolution of their EE which is almost 2%. Of the 562 studied, 33 developed tolerance to 1 or more of the foods causing EE which is around 6%.
These are worse numbers than I thought.

We always get the wagon and walk laps while waiting for the procedure.

Sorry this is kind of graphic.

Pics

2009-01-06T17:56:00.000-08:00

This Pic is for those of you who questioned my ability to dress a girl in pink.
Yes, she is in PINK and has a FLOWER in her hair.

Kadence's EGD

CHRIS AT HIS WORK

Taegan and his best buddy and cousin Daxton

The Day has Come

2009-01-05T20:28:00.000-08:00

OKAY, okay I finally created a blog. I really didn't want a blog but the reason I decided to create one is because I have searched out other blogs to find more info on my son's disease Eosinophilic Esophagitis and to be able to talk to other mother's dealing with the same frustrations that I have. I figured if I was using their blogs it was probably fair if I created one myself in case other mother's are doing the same thing. I warn you that this will probably be a boring blog. I have no time. If I happen to have time I am normally doing other desperately needed things. I guess we will see how this goes. So....I will probably put some pictures up because that seems to be what most people like to see anyway. Who has time to read these days!

Eosinophilic Esophagitis

2009-01-05T20:26:00.001-08:00

The main reason that I created a blog is because of Taegan's disease. If anyone else is searching for other mothers to talk to feel free to leave me a comment.

This disease is such a roller coaster. I thought since we figured out what was wrong that things were going a lot better but things can change fast.

Taegan's story from the beginning: From the time he was born he always seemed so little. He used to spit up all the time in large amounts, it would pour out of his mouth. He would be soaking with puke both his clothes and our clothes would need to be changed, the floor would need to be mopped. The best thing to use was his blanket, not a burp cloth. It was very messy and I was constantly washing his car seat.

I brought up my concerns to his doctor over and over again. His weight started dropping off the charts and he didn't gain any weight for about 6 months. He was an ornery whiny kid. I call him my leech because he is attached at my hip. He also didn't sleep through the night. I was feeding a bottle around 4 am still at a year. Some thought I was spoiling him but a mother's instincts are best and I'm glad I did it. His vomiting started getting worse as he got older. I didn't know then but it was probably because we were introducing more foods. I kept a food diary and kept track of his puking and we couldn't pin point why. Some days he would vomit 12 times a day. Sometimes while he was eating, right after, or hours after. He also couldn't handle textured foods and still has issues today. He will gag or choke on a piece of apple so he pretty much eats pureed foods.

He was put on and off different medications. At first the doctors thought it was acid reflex which is a very common mistake with this disease. But the medication wasn't helping and I kept pushing. Something wasn't right. Taegan had an upper GI and chest Xray but didn't reveal anything. I took Taegan to a GI pediatrician who thought Taegan had Eosinophilic Esophagitis after talking to me for 5 minutes. We did a scope job on him a week later and that confirmed he had EE. Taegan was diagnosed in May 2008 when he was 14 months old and I was 6 months pregnant.

It was a relief to finally find a problem so we could work on the solution. I just didn't realize it was going to be such a hassle. I thought, oh give him a surgery or medication. It's not that easy. It is a daily struggle and many questions and not a lot of right answers. The best thing to do is eliminate foods from his diet, but I have heard some kids even struggle with the formula only.

Taegan has had skin prick testing done in UT and Vegas. He also had patch testing done in San Diego. He can't have any wheat, soy, dairy, eggs, peanuts, olives, garlic. His main source of food is a hypoallergenic formula.

TODAY ---- Since then he has had 2 more EGD's (scopes) and he is having another one done this month. He is 21 months old and Kadence is 4 months old. Kadence also was scoped because she was spitting up all of the time but so far she just has a loose sphincter. We are crossing our fingers she doesn't develop this disease.

We food trialed wheat and failed. The last few weeks have been a nightmare in getting him to drink his formula. It is absolutely disgusting. I've tasted it myself. It would be a great weight loss diet. He is constantly refusing his bottle and I end up pouring most of his formula down the sink. Feeding him can take hours each time and it can interfere with plans if he hasn't eaten. It seems all I do all day is try to get him to eat. There are also times when he will eat but then he vomits so I regret pushing him to eat. Anytime I eat I feel guilty and try to not eat in front of him because he constantly asks for bites and hangs on his high chair. It is sad that Kadence will pass him up this year. I think that will be very hard on me and Taegan.

I try to wait until he is hungry enough to drink his formula but after he refuses for so long I feed him other food so he won't starve. Even other food is hard because he doesn't do well with textures and he eats so little amounts. I think that him being hungry is part of the reason he is so ornery. But hey, I would be ornery too if I was starving all of the time and had to eat the same disgusting thing everyday while I see others eating whatever they want.

Most people say if mom isn't happy no one is happy. Well our mood is based off of Taegan's. I just want my little boy to be a normal toddler. He screams a lot of the day. Luckily Kadence is so good but I feel bad for her because she needs me too and Chris is gone so much it is just me.

We have to make some changes. We have decided to do more food trials hoping it can open up more food but if he fails will probably be putting him on a feeding tube. We will most likely go to Primary Children's for that. If he passes one trial hopefully that will open up more ideas and options to getting him to drink his formula.

The trials are hard in the fact that it is so exciting to give him a new food, but if he fails he gets use to eating more foods that taste good and then I have to take them away after he gets use to having them for a month. It is also a relief to take them away because it takes weeks for the eosinophils to leave his system so it takes awhile before he feels better.

The past 1 1/2 weeks he has also started vomiting again on Avg of twice a day. I took him to the doc and he doesn't think it is related to the disease even though I would disagree. He gave Taegan some anti nausea pills for Cancer patients but they aren't working. Taegan is still so ornery and gets up several times a night screaming. Sometimes it is because he has just puked in his bed. Anytime he cries I have to go check to make sure he didn't throw up. Between him and Kadence I can be up 8 times in 8 hours and then it is time to get up. She is better than he is but his screaming wakes up everyone in the house. My patience is running very thin these days, but I also have a lot of guilt. I feel guilty for not being as patient as I should and for not being able to give him the food he wants. There is always more that I could be doing. Always.

I am learning to be more of a cook these days. I wasn't much of one before but I am trying to learn how to make more foods for Taegan. It is frustrating though because it takes me hours and then it doesn't always turn out after I have substituted so many other ingredients and Taegan won't eat a lot of them because they really don't taste that good.

I have left several messages with the San Diego clinic and they never return my calls. I am very unhappy with them especially after I paid all of that money to take the trip down there and then they can't even call me back. I am debating going to the clinic in Colorado because that is the next nearest. I don't know of anyone visiting Colorado and would love some feedback.

Please don't think I'm totally complaining. I'm just trying to tell how life is. I am also fortunate there are foods Taegan can have. Many other kids with EE are way more restricted than Taegan is. Some kids can only have formula and water. I also have a great supportive family who are there if if I need them. Anytime a procedure is being done they pitch in and help anyway they can. My mom went to San Diego with me and goes to most appointments and procedures. My sister who has a son the same age is also very good when meal time comes around. We have to be careful in keeping their foods separate but we try and not make a big deal out of it. Sometimes she will changes some of her son's diet to accommodate Taegan's and there are times she goes without because she doesn't want to eat in front of Taegan. My family worries about Taegan as much as I do.

We are also blessed in so many ways. Trials seem to make you realize how blessed you are. Chris's job is hard in the fact that he is gone so much and works a lot of overtime, but it pays good and we are SO fortunate that his insurance is great and is covering the formula. So many people are struggling with that I couldn't imagine adding that to the list of things to worry about with this disease. The formula is more than most people's mortgage payment.

There are many things I wouldn't trade his disease for but that still doesn't make it easy .I have so many unanswered questions because everyone has a different opinion and there aren't any right answers because this disease is still so new. I am constantly reminded how he is different and how life is going to be hard on him. It will be quite a few years before he is old enough to understand why he can't eat our food. Our society revolves around food. Every time I put anything into my mouth I think about it.

http://www.apfed.org/video.htm

http ://www.youtube.com/watch?v=lcME4XBJGDs&feature=related

http://www.youtube.com/watch?v=UPbsjt7qJtM&eurl=