cfmommaluv
New member
My 8 year old daughter Vanessa was diagnosed when she was 8 months old. The doctors have said that she has a more sever case of cf, and a rare gene mutation. (Although I don't know exacty what that mutation is yet.) I'm wondering if there are anymore parents of a bi-racial child with cf. She is the only one in Utah that I know of. Are there any other children going through the same thing?
As a single mom of 3 adhd children, 1 with cf and bi-polar, is already challanging emotionally and financially. After her diaganosis I dropped out of college, and I make $50 over the income limit for medicaid, so I lost that, she wasn't sick enough for SSI, and now the out of pocket costs of copays & Rx is put me where I am barely making my bills. I don't recieve child spport and I don't make a lot of money. I would just like to talk to someone who can relate.
Because the doctors have agressively treated her, she has rarely been sick or had any issues. Only a few months ago, she went on TOBI and QVAR. I was told that the doctor was trying to do some research on her mutation because she was the only child out of 220 at the clinic that would get these rare bacterial infections that they had never seen before. Even through she is thin, she still physically looks pretty healthy, but her weight keeps dropping and they quickly admitted her to Primary Children's Medical Center in Utah, where we are from and on onday they are going to be putting in a G-tube. The reality is finally sinking in, so far medications, treatments, appointments, and annual clean outs are routine, now tubal feedings....I'm feeling a bit overwhelmed.
Any response would be greatly appretiated.
Teresa
As a single mom of 3 adhd children, 1 with cf and bi-polar, is already challanging emotionally and financially. After her diaganosis I dropped out of college, and I make $50 over the income limit for medicaid, so I lost that, she wasn't sick enough for SSI, and now the out of pocket costs of copays & Rx is put me where I am barely making my bills. I don't recieve child spport and I don't make a lot of money. I would just like to talk to someone who can relate.
Because the doctors have agressively treated her, she has rarely been sick or had any issues. Only a few months ago, she went on TOBI and QVAR. I was told that the doctor was trying to do some research on her mutation because she was the only child out of 220 at the clinic that would get these rare bacterial infections that they had never seen before. Even through she is thin, she still physically looks pretty healthy, but her weight keeps dropping and they quickly admitted her to Primary Children's Medical Center in Utah, where we are from and on onday they are going to be putting in a G-tube. The reality is finally sinking in, so far medications, treatments, appointments, and annual clean outs are routine, now tubal feedings....I'm feeling a bit overwhelmed.
Any response would be greatly appretiated.
Teresa