SarahB124

Close Down Syndrome

My son, Daniel, is 26 years old. He still lives at home and we are moving toward a new home, shared with friends. He saw both his siblings go from home to roommates/sharing situations. He works 4 days/wk. in a workshop setting and has a full social life. He enjoys Special Olympics (3 sports). He helps with laundry, cleaning, mowing with lawn tractor, recycling and trash duties at home. His speech is hard to understand until you get used to it. He likes photography, movies and music. A fun guy!

Close Crohn's Disease & Ulcerative Colitis

I am the wife of a man who suffered with undiagnosed pain for about 8-9 yrs., the worst side effect being severe sleep deprivation. After a surgery to correct GERD, then a surgery to correct 2 hernias, he was diagnosed with Crohn's. We were so excited to finally have a name for his problem and now they would know how to treat it!! Hasn't worked out that way. Still trying different meds and diets with very little improvement.

Treatments

Asacol Somewhat Helpful

Dietary Modification Too Soon to Tell

We are trying the macrobiotic diet, modified somewhat. His weight keeps dropping, so I try to add things that are in keeping with the spirit of the diet, but that might keep his weight up a little.

Prednisone Not Working

He had no effects from this drug at all. No good results and none of the common bad ones---swelling of the face, etc. He could have been taking M&Ms. I know this is very unusual.

Probiotics Somewhat Helpful

He takes several of these, the most obviously helpful being Lactaid.

Humira Not Working

The doctor says it can take up to a year to tell if this is helping. Meanwhile my husband is giving himself painful shots I dont think he is good at it and insurance is paying out thousands of without noticeable results.