Pull Thru Network Conference
Monday, July 28, 2008
I just came home from the Pull-Thru Network's conference . This conference was so much fun. I really appreciate all the hard work that went into the planning of it. Not only did I learn information about my son's medical condition and bowel management for Hirscsprung's Disease but I learned about other conditions supported by PTN (pull-thru network). I could really see the interested and dedication to children from each of the doctor's who made presentations. Several of the doctors took time after their session to answer questions with many people individually. I really appreiate the time Dr. Shaul from LA children's hospital spent with a group of us. He gave me new ideas in what we might want to do for the next step with our son's bladder issues. And I was very happy to learn he has opened his own bowel management program very similar to what is being done with Dr Pena from Cincinnati Children's Hospital.
Before this conference I did not understand why Bowel Management was so important. I now have a better understanding after listening to Dr Pena and Dr Bischoff speak. I now have a full list of questions to ask our surgeon including starting a bowel management program.
In the bowel management program it helps the child stay clean so that their self esteem raises and they can be successful in potting without soiling. So what happens in Dr Pena's program at Cincinnati Children's Hospital is the children are divided among two groups: constipation or diarrah. A one time session is held once a month for one week. The family comes to the hospital for a check up, xray and then is either put on a laxative or an enema based on their diagnosis and the program they are having. From there they do daily xrays,check in with the nurse and continue with the enema or laxative (it is adjusted based on how it works for the child). After the week is over they will have figured out what works for the child and they continue at home to do this once a day. The goal is to keep the colon clean for 24 hrs so that the child does not have any leakage of stool throughout the day. This program is a huge dedication from the family and the doctor. Some children need to continue it for the rest of their life while others may only need to do it temporary (like a few years). I would really like to get this figured out for my son so that he can be out of pull ups. Dr. Pena is very much in favor for children to be successful and stay clean w/out a diaper so that their self esteem will be high and they live a more normal life.
I met some awesome families. I met about 7 families that had children with Hirschsprung's, one of them had a child with a late dx like my son. I also met several other families with IA and other anorectal malformations . Even though our conditions are different in name we all had so much in common. I really felt an instant connection with a few families and we kinda all stuck together throughout the conference. I am very grateful we met and look forward to keeping in touch with them. The next conference is tentatively planned for 2010 and next time I plan on bringing the whole family! Seeing the kids interact with each other was priceless. I often felt like crying tears of happiness for them when they realised they were not the only kid who had gone through that. I look forward in my son being able to share in that feeling as well.