My daughter Kale was born June 20, 2007. She was diagnosed through a newborn screening 1 week after she was born. She has two Delta F 508 genes. I'm still learning what that means, but some help would be great<img src="i/expressions/face-icon-small-smile.gif" border="0"> Her pancreas was found to be insufficient and she has been taking enzymes since she was two weeks old. Because of that she has been growing great, (top 65% for weight and and 75% for length). The doctors at our CF clinic haven't suggested started any physical therapy with her and we do not see a GI doctor. She takes vitamins, but not vitamins that are prescribed to CF patients, just regular old ones that I buy at WalMart. Basically, she has not had many symptoms, so I dreaded the day that she would...
On her last throat culture, she had psuedomonas show up. We are doing two treatments of TOBI a day and Cipro. She also just got and ear infection, so she has two other meds for that. I feel empty all over again, just like the day she was diagnosed. I feel like I'm doing something wrong - is it even normal for a infant so young to have that bacteria showing up on a culture already? I always feel like the doctors are not telling me everything about my daughter. No matter how painful I want to know if this is already really bad news for her. Does it deternie at all how severe her case might be? If anyone can help me with some answers, I would really appreciate it.
P.S. What is everyones' take on having a child with CF around pets, namely dogs. We have one and my husband and I disagree on keeping our dog in the house all of the time. I HATE the hair and dirt she leaves all over the house!!!! (Constantly cleaning<img src="i/expressions/face-icon-small-smile.gif" border="0"> How much does this affect my daughter?
------------------------------------------------------------------------------------------------Mom of a BEAUTIFUL baby girl named KALE
On her last throat culture, she had psuedomonas show up. We are doing two treatments of TOBI a day and Cipro. She also just got and ear infection, so she has two other meds for that. I feel empty all over again, just like the day she was diagnosed. I feel like I'm doing something wrong - is it even normal for a infant so young to have that bacteria showing up on a culture already? I always feel like the doctors are not telling me everything about my daughter. No matter how painful I want to know if this is already really bad news for her. Does it deternie at all how severe her case might be? If anyone can help me with some answers, I would really appreciate it.
P.S. What is everyones' take on having a child with CF around pets, namely dogs. We have one and my husband and I disagree on keeping our dog in the house all of the time. I HATE the hair and dirt she leaves all over the house!!!! (Constantly cleaning<img src="i/expressions/face-icon-small-smile.gif" border="0"> How much does this affect my daughter?
------------------------------------------------------------------------------------------------Mom of a BEAUTIFUL baby girl named KALE