Day 3 of formula only

Well yesterday (day 2) was a good day for Tanner. He was very well behaved and a love bug. I really think that food was affecting him in so many different ways including making him irritable and just mean sometimes. These past 3 days he has been a new child and I love it.

Today things got a little hard. He asked for food several times today and by 6pm we were in the car and he started yelling that he wanted food NOW. It broke my heart. I had to call home and tell everyone to eat and I would keep him out for a while. I just could not bring him home to see us eat dinner.When we got home I went in the room and ate while he hung out with daddy. We did meet up with fellow EE parents Susi and Rick and their daughter Alyssa. Alyssa talked with Tanner about her feeding tube and even showed it to him. Tanner has decided that he is going to drink his Elecare so that he does not have to get a feeding tube. He drank 32 ounces (960 calories)today and will probably get up for more in the night. Monday and Tues he drank no more that 21 ounces (630 calories) I am so grateful for the support that I get from all the other Eos parents. I am very grateful that Alyssa is so comfortable with talking with other kids about this disease. I think it really helped Tanner to hang out and talk with her tonight. He has not stopped talking and asking questions about her.

Tanner is such a tough kid! I love him and just wish he did not have to have EE. We need a cure!

Day one Formula only

Yesterday was day one of no food for Tanner. Only 89 days left to go. He actually did better than I thought he would. He asked for a snack in the morning and when I said "remember we talked about how you can't have food anymore, only formula" he was bummed out but got a bottle and went on with life. At dinner non of us felt right eating so I said to him "Tanner we are about to eat dinner would you like a bottle or dum dum? he said no thank you and sat on the couch and watched Dora. He was perfectly fine with not eating dinner. We will see what today brings. Tanner never fails to surprise me with how strong he is.

Tanners Endocopy results

I wanted to update all of you on Tanner’s latest test results. As you all know Tanner had a Scope in August and his EOS numbers were higher than they had ever been. The G.I suggested that we go formula only. After talking with the Allergist we decided that we would cut his diet from 15 foods to 5 for 3 months and see if that would bring the numbers down. So for the past 3 months all Tanner has had to eat is pork, rice, olives, apples and broccoli.
Tanner had an endoscopy on January 29th to see how he was doing on this new limited diet. The procedure went well and Tanner woke up in a much better mood than he did the last time. The doctor said he thought everything looked good, but let’s wait for the biopsy results. The doctor called me today to tell me that the numbers are even higher than in August and the tissue looked “unhealthy”. Then he once again tells me he thinks it is time to go formula only. We could do steroids but that would be temporary (no more than 6 months) then we would be right back where we are.
After praying and much thought Blue and I have decided to go formula only and allow Tanners body time to heal. This decision was not an easy one and will be hard on all of us. I think it will be harder on us than it will on Tanner. I think as his body heals we will see a much happier, healthier child. Not that he looks unhealthy now. Maybe he will actually sleep through the night J
Please keep Tanner in your prayers; this is going to be a rough 3 months. Thank you all for your support and being such great friends and family.

Tanner is doing great!

Tanner has been on his new diet of pork, rice, broccoli, olives and apples for almost a month now. He is doing very well. I am so surprised at how well he is taking all this. Trick or treating went well I was able to trade all of his candy in for dum-dums and smarties and he did not seem to care.
Last week at a party I have overheard Tanner tell people that offer him cookies and candy " I can't have that anymore" It breaks my heart but gives me peace of mind knowing that he will not just take food from anyone.

We went to my nieces birthday party last weekend, the first birthday we have gone to since the new diet. I was worried how Tanner would react when he did not have his own cupcake. In the past I was able to make a cupcake for him but now his diet is so limited I just cant. Tanner sang Happy Birthday and said wow cool cake and went about his playing. When my mom said "he cant have any cake? even if we take the frosting off" I wanted to cry. Then I looked over at Tanner running and laughing and said "It bothers you more than it does him."

For the first time since this disease took a hold o our lives I am looking forward to the holidays. The past few years I was so worried that someone hand Tanner a treat and he would take it. This year we can all enjoy and not stress out about it so much knowing that Tanner can say "no I am allergic."

Just wanted to share some good news with you all for a change. Right now all is great and Tanner is a happy kid. God has blessed us with an amazing, smart, strong, loving son. I am thankful everyday to have Tanner in my life.

What is next for Tanner

Well it has been a month since Tanner's endoscopy/colonostopy and his Eosinophil count was higher than ever. We had a few options 1. go formula only for 3 months and hope for a clean scope. 2. get him in the Budesonide study. If he was in the study he would not change his diet at all. Well we went in a little over a week ago to get the slides sent off to Cincinnati to see if his counts were high enough to qualify. In order to be accepted he had to have 15 Eos in 2 parts of the esophagus. Unfortunately He had 45 in one and 3 in the other so he does not meet the criteria.

We also have been to see the allergist to get testing done which I also bogged about. He thinks it is drastic to take all of Tanner's food away. He thinks we should pick 4-5 foods that Tanner tested negative too on blood and skin test and go with those and formula for 3 months. If he scopes clean after 3 months we can do some food trials. If his scope is not clean then we will be forced to go with formula only.

Blue and I have weighed all of the options and think that the allergist is right. We need to try to keep some foods. If we have to go formula only after that then we can accept that, but we don't have to like it. So starting today Tanner can only have pork, rice, apples, broccoli, olives and Elecare (formula).

We sat Tanner down today to tell him. His response was "Mommy I need food to get bigger" He is just to smart. I tried to explain that he will still get food but only those 5. I also told him we would find some fun snacks to make with apple like fruit roll-up (homemade of course) He has already begged for sweet potato chips. The only thing that stopped him from having a breakdown was a can of olives and I had to let him open them. This is going to be tough!

Tanner is such a great kid. He is sweet and just takes it all as it comes. He has done very well with not having the same foods as everyone else. I know that we will get through this but it will be hard since he just lost what few foods he loved. Please keep us in your prayers we need all the help we can get.

Thank you to all of you who read this. I really have a hard time calling everyone and explaining all this. It is so emotional for me. I don't want my little boy to fell left out and we all know everything revolves around food especially with the holidays around the corner.

"I don't wanna tell you"

We are still waiting (3 weeks now) for the blood test results. I am getting very frustrated and think I will just show up in the officeMonday and demand them. I can't keep wondering if what I am feeding Tanner is making him feel sick. He has been behaving out of charecter lately. This morning I asked him to trow away his diaper and he had a breakdown. He was laying on the floor next to the trash screaming "I don't want to". He has also been begging me to take him to the potty and stay in there with him (he usually is a very private kinda kid). He does not want anyone looking at him and actually got into a fight, I mean hitting and pushing, with a kid (he did not know)the other day because he looked at him. He has not been eating and is not drinking his formula. I know some of this is him just being 3 but I just knew something was not right with him.

So this morning I sat him down and asked what was going on with him. He informed me he feels yukky and his tummy hurts a lot. I asked him where and went to touch his stomach and he yelled "don't touch my tummy" I told Tanner "you need to tell me when you don't feel good of feel tired so that I can help you to fell better" He says he "I don't want to tell you, I wanna play."

I am just so sick of this disease and just want my little boy to feel better! I also don't want him to not tell me when he does not feel good.

Allegy Testing

these are egg, milk, wheat, soy and peanut the

largest are egg white, egg yolk and peanut

Tanner went to the allergist yesterday to get allergy tested. He had the Scratch test done. Basically a scratch test is one form of a skin test for allergies. A small drop of a possible allergen is placed on the skin. A tiny scratch is then made in the surface of the skin. After 10 minutes the spots are measured to determine how allergic you are. We also have to get a rast test done (blood test). If Tanner is negative on the skin test and the blood test then he is allowed to try that food.

The bad news is that Tanner tested very positive (allergic) to some foods he has been eating. These are all food that he had previously scoped clean on and tested negative to on allergy test (scratch and blood).

The good news is Tanner tested negative to Apple, green bean, broccoli, cantaloupe, grape, orange, peach, pear and rice. The allergist thinks that we should try going with formula and these few foods that he tested negative to and then after 3 months scope. If the results are still not good then we can go formula only. We just have to pray that his blood work comes back negative to all or most of these foods for this plan to work.

Once again we need your prayers that he will test negative to some of these foods. I will update once we get results back.