TEN years old

At ten years old we are in such a good place.  Joey is a healthy, active 4th grader.  He has regular bowel  movements on his own, without the aid of med’s or irrigations.  That being said we still follow a strict regimen of healthy, clean, high fiber eating.  He is on very high dose of […]

Personalized Stem Cells Shed Light On Hirschsprung Disease

Interesting article about HD and stem cells Read more from Asian Scientist Magazine at: https://www.asianscientist.com/2017/04/in-the-lab/hirschsprung-disease-stem-cells/

PodCast about approach to Hirschsprung’s Disease

I got this link in my google alert, thought I would share it with the HD world. -joe   http://www.pedscases.com/approach-hirschsprung-disease

6.5 years old and 6 years post pull through

Joey continues to amaze. Things are ‘normal’. We monitor is fiber and water daily. Keep a very ‘clean’ healthy diet w/ some cheating here and there. He poops 1-4x per day. They never look or sound like a ‘normal’ poop but that is totally okay w/ us!!!!! He’s been on antibiotics twice this year w/ […]

New Research Sheds Light on Hirschsprung’s Disease

“This is an interesting finding, because people have wondered for a long time if there is a single bacterium that causes the process (enterocolitis), but this shows that it is really the balance or whole community that may make a difference,” he says. This new understanding could lead to monitoring of intestinal bacteria and possible […]

Video explanation of Hirschsprungs Disease

Dr. Marc Levitt is Surgical Director for the Center for Colorectal and Pelvic Reconstruction at Nationwide Children’s Hospital.  Here is a good simple accounting to learn just what this disease is about.

saccharomyces boulardii

S. boulardii is one of the supplements Joey takes daily. We recently increased his dosage after he started suffering from very very watery poop following/during a head cold. His poop turned to completely to dirty water on day 2-3 of a cold. He takes this ‘healthy yeast’ daily (2 capsules per day emptied into applesauce). […]

Stomach bug

We all got the dreaded stomach bug over New Years. I am very very very happy to report that allthough Joey did get sick (vomitting) he had NO HD flare-ups at all. He stopped pooping for a day, but that was because we didnt eat for 24 hours or so. He got better after 24 […]

there is HOPE….

Today I got a phone call from an HD Mama from Texas. Her two year old is struggling w/ not pooping. Her GI’s are pushing Miralax. All and all she is having a really tough time, not only w/ the daily STRUGGLES of HD but w/ the emotional component. In talking to her I remembered, […]

One year irrigation free + stomach bug + Happy Birthday Joey

We made it ONE YEAR irrigation free. I’m so amazed. Every single December has been a struggle for Joey and I can list the things that happened each and every Dec since he was born on 2008. I dont have a great memory but when it comes to HD my mind remembers it all. Last […]