I watched this show last night and I want to know what was the diagnosis for Little Avry Conley. I have a friend with a little boy who has a lot of the symptoms of Avry.

Avry had something called Masocytosis. It's listed here: http://health.discovery.com/convergence/mystery-diagnosis/diseases_05.html
Essentially, he had too many Mast cells in his intestines, and that was what was causing all of his symptoms. He is on a very restricted diet, and has to have intravenous ImmunoGlobulin, or IVIg, therapy frequently, and closely monitored if he gets sick.

With the condition with Avry Conley-which doctor/hospital did he visit? My sister has a son with the same symptoms and he is only 1 month old. She is getting the same run around that the Conley's did with allergies to breastmilk, allergies to milk formulas, etc.... So I would like to know of the pediatrician who gave them the right answers.

it was masocystosis.

Does anyone know if any colitis was found or if blood was ever found? My son started showing symptoms when he was 3 weeks old and it took a long time to get anyone to do anything. Finally at 10 months old he had a colonoscopy and found a ton of inflammation. Since then he has been diagnosed with Inflammatory Bowel Disease. I have not felt confident in that so I am just researching more things.

Does anyone have the same condition as the woman on this show? If so read my topic Life Changing Show. Thats what I have & I would like to speak to others with the same condition.

quote:

Originally posted by traciedee28604:
I watched this show last night and I want to know what was the diagnosis for Little Avry Conley. I have a friend with a little boy who has a lot of the symptoms of Avry.

Has anyone considered the boy (or any child with these symptoms)has the inability to digest L-Lysine. I understand there is a test to varify this. Please past this on.

quote:

Originally posted by mumof3:
Does anyone know if any colitis was found or if blood was ever found? My son started showing symptoms when he was 3 weeks old and it took a long time to get anyone to do anything. Finally at 10 months old he had a colonoscopy and found a ton of inflammation. Since then he has been diagnosed with Inflammatory Bowel Disease. I have not felt confident in that so I am just researching more things.

Pls ask for a L-Lysine tolerence test. TLC showcase another infant that had this inability to digest L-Lysine found in proteins(milk, soy, )and many Dr.'s missed this on the test. Good Luck.

quote:

Originally posted by guillo:
With the condition with Avry Conley-which doctor/hospital did he visit? My sister has a son with the same symptoms and he is only 1 month old. She is getting the same run around that the Conley's did with allergies to breastmilk, allergies to milk formulas, etc.... So I would like to know of the pediatrician who gave them the right answers.

Hi ask the Dr. to run a test for L-lysine digestion. There was another episode that they actually found the cause of the symptoms manifesting. Would you agree treating the symptoms is not the answer? Find the cause...regards

quote:

Originally posted by mumof3:
Does anyone know if any colitis was found or if blood was ever found? My son started showing symptoms when he was 3 weeks old and it took a long time to get anyone to do anything. Finally at 10 months old he had a colonoscopy and found a ton of inflammation. Since then he has been diagnosed with Inflammatory Bowel Disease. I have not felt confident in that so I am just researching more things.

You are right to research more, the IBD is a symptom of the cause. Your answer I believe will be on the episodes airing between Aug. 27 to Sept. 10. Watch for the one with the baby that had a swollen stomach symptom that tipped the Dr. off to what was the cause....L-Lysine was not digesting..lots of it milk/soy protein that is in the formulas....hope this helps you.

My son had the same symptoms when he was a baby (one month). We use to live in Nigeria then, we spent one year going from one hospital to another but no ne of the doctors knew what was wrong with him. So he was always in the hospital because he has to be on IV since he couldn’t keep food down. Shortly before he turned one, everything just stopped and he began his life, to me it was a miracle. He is now 8years and he hasn't had those symptoms again but my concern is that when he passes out gas, the smell is very offensive like something dead inside him. I have spoken to his doctor about the gas and she doesn’t seem to think it important. I just want to make sure he is ok and that illness is not going to come back. My son is not on any special diet, he has never been. Does anyone have a similar case to mine?