This is where I am asking for your help, wonderful blogger/internet community. Here’s why:
My husband’s cousin has a little boy called Quentin who is 7 years old. He is very poorly at the moment and she has reached out to see if anyone can help their family with advice or support (as well as prayers).
Quentin has been diagnosed with something called Hinman’s Bladder which is a “non-neurogenic neurogenic bladder.” Basically, a bladder that behaves as though there is a neurological issue but there is not one. He is voiding against a tremendous amount of pressure which is causing scarring in his bladder and pressure on his kidney and ureter (kidney is enlarged & getting worse). The doctor is not exactly sure why this is happening (there is nothing obviously wrong with his system and yet his symptoms continue to worsen). In an effort to save his kidney, they are recommending intermittent catheterization (where they cath him off and on, every 3 hrs) for a few years, possibly life.
She needs real feedback, thoughts, experiences,recommendations to other urologists, recommendations to online support groups. She has had a second opinion but she wants to get as much information as possible.
As you would, if it were your own child. Does anyone out there know anything about this or where she might find support or information (apart from just googling it..)?
Really appreciate anything you can do to help