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.

Not what I wanted to hear!!!

Went to the GI today to talk. He thinks that Tanner probably will not make it in the study. He says that the stomach pain and distention could be from constipation (which is a real problem for Tanner). He decided we should tackle that problem and if the constipation goes away but he still has tummy pain we know it is an EE issue.

When I brought up the question of what to do about the high EOS count he informed me the only way to find the offending food is to go formula only for 3 months. This is so not what I wanted to hear. “It is only 3 months” is the answer I got when I said I cant see how we can do that. I have seen other families do it and I know it is done and it is for the best but it is going to be so hard!

We are going to take the next 2 weeks and see how he does on Mirilax for the constipation before we try to go formula only. Maybe by then we will know if he made it into the study and we can keep food but it is not looking so good.

Please keep us in your prayers! We will need them especially with the holidays coming what a time to lose food.

Not what I wanted to hear!!!

Went to the GI today to talk. He thinks that Tanner probably will not make it in the study. He says that the stomach pain and distention could be from constipation (which is a real problem for Tanner). He decided we should tackle that problem and if the constipation goes away but he still has tummy pain we know it is an EE issue.

When I brought up the question of what to do about the high EOS count he informed me the only way to find the offending food is to go formula only for 3 months. This is so not what I wanted to hear. “It is only 3 months” is the answer I got when I said I cant see how we can do that. I have seen other families do it and I know it is done and it is for the best but it is going to be so hard!

We are going to take the next 2 weeks and see how he does on Mirilax for the constipation before we try to go formula only. Maybe by then we will know if he made it into the study and we can keep food but it is not looking so good.
Please keep us in your prayers! We will need them especially with the holidays coming what a time to lose food.

Endoscopy/Colostopy Results

So most of you know that Tanner had his endoscopy/colonostopy on Friday. I talked with the Dr. today and his eosinophil counts are higher than they have ever been. He had 15 in the upper part of his esophagus and 86 in the lower part. The esophagus should have 0 eosinophils but anything 0-15 in considered normal. His colon was clean. We are basically at square one and any progress we had made is gone. Right now we have 3 options:

we can try to get into the budesonide study again. Budesonide is actually the same thing as pulmacort (used for asthma). They have made it suspension form and the idea is when swallowed it coats the esophagus and kills the eosinophils. They pros are Tanner would get to keep all of the foods that he is on and all medical tests and visits and the medication would be paid for. The cons are it is a study and the long-term effects are unknown and he could end up on a placebo. However if we do not see a change or he gets worse we can take him out of the study. My theory is he has been going like this for a year now. I don’t think that a month of two is going to make things worse.
We can do swallowed Flovent. Flovent also an asthma medication which is an inhaler. He would swallow instead of inhale the medication. With this we would still have to find the food that is causing this and take it out of his diet. Which sounds much easier than it is. And the medication would be somewhat costly.
We could take all his food away and go formula only. This would probably be my last choice because it would be devastating and he would probably end up on a feeding tube. However it would give him a chance to heal and then we could start food trials and find a truly “good” diet. This would probably still require flovent to help because diet change takes time to work.
I am torn between option one and two. I just don’t know what we are going to do right now. I will update you all when we have made a decision. Tanner has and appointment with the GI on Monday and the allergist for testing on Thurs. I should have the answers by then. Keep Tanner in your prayers