Denver Doctor Visit Results

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.