I Have An Undiagnosed Child
Update. A bit ago (aug 24) we went back to ACH for Dils urology appt. It was a different one that actually took his problem seriously and listened to us. Really really listened. That was nice.
So the doc wants to talk to the genetics and research peeps and get us back there. He thinks that Dils joint issues and weak nails are related to his urine and bowel problem. He wouldn't tell us his hunch though. So we go back in six months. He put Dil on profolatctic bactrim and guess what. It makes him hungry! He's been eating!!!!
His bowel issues are about the same. Some days the laxatives work. Others he needs extra and/or an enema. At least we won't have to worry about him having UTIs all the time. *takes deep breath*
He's been having nightmares nightly since his last appt. And his knees have been floppy. His wrist keep getting loose and he needs tylenol when he jams his joints. I don't know if I could brace it or just watch him like a hawk. But he's a 2 year old boy. There isn't a whole lot I can do to keep him from bouncing around.
Next appt is Jonesboro in november I believe. Waiting to hear from them. *crosses fingers*
So the doc wants to talk to the genetics and research peeps and get us back there. He thinks that Dils joint issues and weak nails are related to his urine and bowel problem. He wouldn't tell us his hunch though. So we go back in six months. He put Dil on profolatctic bactrim and guess what. It makes him hungry! He's been eating!!!!
His bowel issues are about the same. Some days the laxatives work. Others he needs extra and/or an enema. At least we won't have to worry about him having UTIs all the time. *takes deep breath*
He's been having nightmares nightly since his last appt. And his knees have been floppy. His wrist keep getting loose and he needs tylenol when he jams his joints. I don't know if I could brace it or just watch him like a hawk. But he's a 2 year old boy. There isn't a whole lot I can do to keep him from bouncing around.
Next appt is Jonesboro in november I believe. Waiting to hear from them. *crosses fingers*
By:
luckypickle
Age:
26-30
