ctalbott0609
New member
We finally met Dr. Black and his team at Children's Mercy today. They say they're excited to find out that she has CF because they've caught it so early. At the moment they believe she has DF508 (I hope that's right) and they expect her to out live us <img src="i/expressions/face-icon-small-smile.gif" border="0">
They ordered Genetic testing, along with the other labs to confirm it, and find out the likely hood of my son having it, and if myself, and Andy (DH) both have the Gene. Just to be safe, he also asked me to bring my son in for a sweat test at the next appt. (Double trouble lol. He's very hyper <img src="i/expressions/face-icon-small-tongue.gif" border="0"> )
They also started her on the enzymes, gave us vitamins to start next week, and we're going to start adding salt to 1 bottle a day.
We definitely got bombarded with sooo much information, and I have an entire book to read on CF. I'm definitely feeling better after meeting with the team, and I'm looking forward to getting Paige healthy. They said she looks great now, and it's very good that this isn't effecting her really.
They also asked me if I'd like to participate in a trial (?) It's for infants who were diagnosed at birth, and who are bottle fed. They know that Children with CF have low amounts of fat called DHA in their bodies, and they are studying to find out if using a formula with extra DHA in it might be helpful for children with CF. If we participate, they will randomly send us either Enfamil lipil, or a special brand of Enfamil that has 3 times the normal DHA in it. We won't know, and I guess it's decided by the flip of a coin. They don't believe there is any risk, and the trial will last for a year, and they buy all the formula needed.
What I would like to know, is if anyone else has heard of this, and if it sounds ok. I think it does, but then again, I'm new to this, and I'm not open to doing any trials that are experimental, or could cause her harm. This seems safe though, and if there's no risk, and only the possibility of it benefiting her....then it should be ok...right? They'd like me to think about it, and decide before my next visit in two weeks.
Well, I'm going to head to bed. I finally slept sound. It was just two hours on the drive home, but it was the most rested I've been in a week, and sleep is sleep right now lol. My appetite is also doing better <img src="i/expressions/face-icon-small-smile.gif" border="0"> Thank you so much for everyone who's been worried about us. I'm feeling very hopeful and optimistic at the moment. I sure hope it lasts <img src="i/expressions/face-icon-small-smile.gif" border="0"> OH! I also had the pleasure of meeting Rebekahsmom (Robin)today at our appointment. It was totally unexpected, but I can't explain how much of a relief it was to finally personally meet another mom, who's going through what I am, and to see with my own eyes, how beautiful her daughter is, and that Paige will in fact, be just as beautiful, and just as normal <img src="i/expressions/face-icon-small-smile.gif" border="0">
They ordered Genetic testing, along with the other labs to confirm it, and find out the likely hood of my son having it, and if myself, and Andy (DH) both have the Gene. Just to be safe, he also asked me to bring my son in for a sweat test at the next appt. (Double trouble lol. He's very hyper <img src="i/expressions/face-icon-small-tongue.gif" border="0"> )
They also started her on the enzymes, gave us vitamins to start next week, and we're going to start adding salt to 1 bottle a day.
We definitely got bombarded with sooo much information, and I have an entire book to read on CF. I'm definitely feeling better after meeting with the team, and I'm looking forward to getting Paige healthy. They said she looks great now, and it's very good that this isn't effecting her really.
They also asked me if I'd like to participate in a trial (?) It's for infants who were diagnosed at birth, and who are bottle fed. They know that Children with CF have low amounts of fat called DHA in their bodies, and they are studying to find out if using a formula with extra DHA in it might be helpful for children with CF. If we participate, they will randomly send us either Enfamil lipil, or a special brand of Enfamil that has 3 times the normal DHA in it. We won't know, and I guess it's decided by the flip of a coin. They don't believe there is any risk, and the trial will last for a year, and they buy all the formula needed.
What I would like to know, is if anyone else has heard of this, and if it sounds ok. I think it does, but then again, I'm new to this, and I'm not open to doing any trials that are experimental, or could cause her harm. This seems safe though, and if there's no risk, and only the possibility of it benefiting her....then it should be ok...right? They'd like me to think about it, and decide before my next visit in two weeks.
Well, I'm going to head to bed. I finally slept sound. It was just two hours on the drive home, but it was the most rested I've been in a week, and sleep is sleep right now lol. My appetite is also doing better <img src="i/expressions/face-icon-small-smile.gif" border="0"> Thank you so much for everyone who's been worried about us. I'm feeling very hopeful and optimistic at the moment. I sure hope it lasts <img src="i/expressions/face-icon-small-smile.gif" border="0"> OH! I also had the pleasure of meeting Rebekahsmom (Robin)today at our appointment. It was totally unexpected, but I can't explain how much of a relief it was to finally personally meet another mom, who's going through what I am, and to see with my own eyes, how beautiful her daughter is, and that Paige will in fact, be just as beautiful, and just as normal <img src="i/expressions/face-icon-small-smile.gif" border="0">