I stumbled upon your site in my search for information about neurogenic bladders. Perhaps you or the broader bladder community can help me. I am curious if there are any other moms (or dads/families) out there that can offer advice, guidance, direction, maybe overall support for this mom in flux. My 6 year old daughter was born with a tethered spinal cord which has been corrected (twice) and in connection a neurogenic bladder. She is 90% potty trained. She is able to go during the day but cannot stay dry at night. Given her age (“pull ups” aren’t “cool”) at 6 the reality of cathing is entering our lives. Bottom line with level 5 reflex and the bladder condition cathing will definitely be in her future. Mostly likely 2-3 times a day so we know it’s actually emptied. She is NOT a fan of it nor does she really understand. Doctors are recommending a “Stoma” (aka port through her belly button). They say it’s much easier to access, cleaner and convenient. Overall an “easier” way to go. It can be reversed and she will still be able to go during the day. I don’t want to make a decision based on it being “easy” though i’m sure for one that has to cath convenience is a factor. My question to this community is does anyone have it? Do you like it? How has it bettered your daily life vs. cathing?
Thank you for the question. I am not a doctor so I would not be the one to offer medical advice but there are organizations that might be able to offer advice. Organizations we endorse are found on the blog resource tab. In the book Beyond Embarrassment, there are many more resources.
You might try this one first. Underactive Bladder Foundation http://www.underactivebladder.org/
I have personally met the founder and he is an honest good man. He would be a good to start with.
I hope all goes well, Trudy
I am looking for an online support group for kids who have neurogenic bladder and have to self cath every day. Can you help?
I am not sure where you can find support groups for kids. Perhaps some information from the resource page on the blog and book, as well, will help.
Kids love to hang out and just be around other kids. Perhaps some would be too shy about discussing toileting with others.
I know from working in a school and going to the nurses room to cath myself there are several students who do the same thing every year. These kids go to the restroom and take care of business so they can go back to the halls and enjoy their friends. They consider it a quick in and out so they can get back to life.
If you feel like you are the one that needs a support group (I totally get that feeling, because as parents so many crazy things thrown at us) please call me. Email and I will send you my number. I know you’re afraid for your child and it is hard. Please try to see this through your child’s eyes. He will forever cath so this is normal for him. No sympathy needed. He will get on with it and live a good life, I am sure. Not long ago I watched a great documentary from Net Flex. Called When I Walk, It was great and I encourage you to watch it. It was about a young man going through life losing everything,walking, all of it, because he had Multiple Sclerosis. His mother gave him no sympathy. She was his cheerleader. She tells him, “You have one life, go out there and live it, think of all that have to live in slums! You do not live in a slum!” Please write and let me know what you think.
I hope this helps, Trudy