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They will have to actually lightly sedate him because theres no way he would hold still otherwise. We need all the luck we can get. I'm kinda nervous because they have never looked at his brain...

Ethan has had every test they could possibly do with him. Besides a CT scan and and MRI. So we shall see if the MRI of his brain will help out or not. I appreciate everyone's input. You never know when the Dr. 's could miss something so simple...

Duplication info. and speech delay... Duplication 16p13.11 Behavior problems (ADHD, Autism, ADD), Heart problems, Kidney problems, GI issues. This is what I found out through a mom who has 2 kids with the duplication. When our geneticist in WI told us he had the duplication. They told us... he...

He was seen at the top 2 children's hospitals in the state of Wisconsin. In the future he will either go to UNC in North Carolina. Or to the Children's Hospital in Cincinnati Ohio. I talked to his ped the other day at his follow up appointment from being hospitalized. I asked her which of the 3...

Lost and confused.... Ethan is now almost 28 months old. He weighs 24 pounds and 4 ounces. He recently seen his 3rd opinion GI Dr. Who said everything is normal... biopsies, tests, etc. Except he has a zig zag abnormality in his duodenum (like a kinked hose) that could have been causing...

Ethan is going to start a medication that is used for dumpling syndrome soon. They think that his stomach may be emptying way too fast. Because we all know with Crohn's can come other issues. He is too young to do the actual test to diagnose a dumping syndrome. He would have to eat a hot dog and...

I will look into this... Great info!! Thank you Thank you!!!!

Thank you all for watching the story. If you have facebook could you please post this to your profile to help spread awareness of Crohn's in children. I think that the more people know and are educated the better. Also hoping and praying a Dr. may see Ethan's story and have an idea of how to...

http://www.wsaw.com/home/headlines/Toddler_Battles_Crohns_Disease_124502004.html?storySection=story I was contacted by the local news station about my son's battle with Crohn's. This is a shorter version than what was on the news. Hoping this will raise awareness of Chron's in children...

Maybe Ethan's story being on the news will make a Dr. open his eyes and offer to help and have some other ideas. So glad the news station contacted us to do a story about Ethan and Crohn's awareness...

Yeah it just freaks me out because i feel as though Dr.'s are letting Ethan waste away. He weighed 8 pounds 10 ounces at birth and at 18 months now weighs 20 pounds 12 ounces on one scale and 20 pounds 6 ounces on another. I worry about the long term effects on Ethan being a year old on steroids...

You are right! I never thought of that. If he isn't absorbing nutrients maybe the whole month of prednisone wasn't being absorbed by his body. I will mention this to the dr. that diagnosed him with Crohns. We are going back to seeing him since the other Dr. has no clue what he is doing. Thank YOU!

I hate when people ask what is wrong with him!? There is no way he is 18 months old is another one. People telling me what I should feed him to fatten him up. I suppose when you get older and have Crohns people have even more assumptions...

The fecal elastase test was in normal range they said... Ethan has to go to his pediatrician on friday for shots and I will ask her what she thinks too. Then back to his 1st GI dr. on Monday because he thinks the second opinion Dr. is full of crap. Ethan doesn't even drink juice. That is what...

UPDATE: We had a follow up appointment with the second opinion Dr. at the Children's hospital. The Dr. agreed the no milk and dairy didn't do a bit of difference with his poops and vomiting. He had 2 solid poops and the rest diarrhea with 3 weeks no dairy or milk. The Dr. said we wait and see...

That is great DustyKat! Thank you!

Okay parents...Our local news station is doing a story on Ethan about Crohn's disease. What are some of the important things that people should know about Crohn's disease? They are doing the segment on my son Ethan to raise awareness about Crohn's in children and adults.

Ethan's diet of no dairy is going okay. His poops have decreased a bit but he won't drink the formula called Elecare they want him to have. He is drinking almond milk instead. Tomorrow we go back to the specialist to see what they think. He threw up last night and has been having frequent stools...

The Dr. was very thorough and went over all of Ethan's records and test results. He said Ethan has had the "million dollar work up". The Dr. is running a Elastace Fecal stool sample test (which Ethan had the poo readily available for that of course). The Elastrace test is to see what level of...

Thanks for all the LUCK! We need it :) ARI: I don't think my son's liver is working correctly either... They did do some type of blood test for the liver panel but it all came back normal... I don't know anyone with white or cream colored poop. My son's GI Dr. said that white or cream colored...