"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

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland"."Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland

Peanut butter m&m/Grapes

On Thursday Tanner found a peanut butter m&m and of course decided to eat it. I found him standing over the trash spitting it out saying "yuk it hurt my mouth." I was so scared! I dosed him with benedryl and waited with his Epi-pen for something major and....nothing. I am not sure if he just spit it out before anything major happened or if the benedryl stopped it in its tracks. Either way I thank God that he did not have a major reaction.

As Tanner gets older and communicates better we are finding that foods we thought were safe are not. On Friday we went to a family gathering and Tanner ate a bowl of grapes. Saturday he had more grapes, but this time he cam to me and said that they hurt his tongue. Later that night he said his tummy really hurt and then this morning he had some pretty nasty mucusy diarrhea. Looks like we have lost yet another food. No more grapes for Tanner.