I was happy and sad to find this group of people to chat with. Happy because I am getting so much good information and sad because there are a lot of people suffering for this disease.
My daughter is 14 yrs old and also has a rare neurological degenerative disease called NPC or Niemann Pick type C. She is wheelchair bound, nonverbal, and g-tube fed. Because of the npc, dr's weren't even considering the possibility of another disease. We went to appointment after appointment messing with the wrong symptoms and possible treatments. It wasn't until she got a horrible case of skin tags on her bottom that the Dr.'s discovered the Crohn's.
She is nonverbal so I have no idea how she feels and where it hurts. I just know she is uncomfortable. Her body language tells me she is in pain. Can you describe what skin tags feel like? I know by looking the are painful, but when not flared up and bright red and bleeding do they go into remission? Or do they always feel uncomfortable?
As for her belly pain. She had a negative reaction to Pentasa so we are on Prednazone. She is squirmy all the time and can not sit or lay down comfortably. I feel like it is a gas issue or she is having some sort of spasm. Is that common? Is that what it feels like? She has been in a recliner for 7 days now. Not to mention 5 in the hospital trying to control this pain or spasm. She has Tylenol with Codine for pain and went from Benytl to Hyoscyamine sulfate drops for the spasms.
Did I mention she had a horrific yeast infection that went treated as diaper rash for 3 weeks and while in the hospital the nurse gave her the placebo birth control pills so she had her period too!! She is a tough girl who is dealing with this remarkably well considering all she is going through. Her mom, however, is SPEECHLESS and looking for some people to talk too.
My daughter is 14 yrs old and also has a rare neurological degenerative disease called NPC or Niemann Pick type C. She is wheelchair bound, nonverbal, and g-tube fed. Because of the npc, dr's weren't even considering the possibility of another disease. We went to appointment after appointment messing with the wrong symptoms and possible treatments. It wasn't until she got a horrible case of skin tags on her bottom that the Dr.'s discovered the Crohn's.
She is nonverbal so I have no idea how she feels and where it hurts. I just know she is uncomfortable. Her body language tells me she is in pain. Can you describe what skin tags feel like? I know by looking the are painful, but when not flared up and bright red and bleeding do they go into remission? Or do they always feel uncomfortable?
As for her belly pain. She had a negative reaction to Pentasa so we are on Prednazone. She is squirmy all the time and can not sit or lay down comfortably. I feel like it is a gas issue or she is having some sort of spasm. Is that common? Is that what it feels like? She has been in a recliner for 7 days now. Not to mention 5 in the hospital trying to control this pain or spasm. She has Tylenol with Codine for pain and went from Benytl to Hyoscyamine sulfate drops for the spasms.
Did I mention she had a horrific yeast infection that went treated as diaper rash for 3 weeks and while in the hospital the nurse gave her the placebo birth control pills so she had her period too!! She is a tough girl who is dealing with this remarkably well considering all she is going through. Her mom, however, is SPEECHLESS and looking for some people to talk too.
