Tapestry, I agree also with the previous poster who addressed the dairy allergies. My husband's parents thought that was the case with him too when he was very young, but foudn that once they were giving him the enzymes (and it took a few weeks to figure out the proper doses and with what meals to give more with, and what meals to give less with) he could tolerate almost everything.
In your last post you mentioned how cassie had already been very sick, one illness after another...A lot of the reason for this is because she hadn't been properly diagnosed and was just being treated as a "common" child with a "common" illness-but now you know that's not the case. I can honestly say now that your daughter has been properly diagnosed, she can begin recieving treatment that will actually help her. I already kind of went into the purpose if the bronchoscopy, but what they will do with the sample they find is culture it with a number of different antibiotics to see if she has built a resistance to any of them yet, and see which antibiotics her body will react to best. That culture usually takes a few tays to a week to get back but it ensures that your daughter will be given the proper medications. CF cultures will become second nature in your vocabulary. My husband has his done now about every 2-3 months just so we can see if he is becoming resistant to anything he is currently taking, and to make sure no new "bugs" have developed in his lungs. Anytime he starts feeling sick or coughing more, we immediately go in and have one done.
About the daycare debate, you might want to post another topic with something about daycare or stay home in the topic. That way, people will immediadely be able to see what you are wanting to know. I think you will get more responses that way than not. I would say (although I am not a parent of a CFer) that you get her on the antibiotics after the bronchoscopy ASAP and then watch her closely in daycare for the next few weeks and see if the cold after cold after cold subside with the proper CF treatment. You might find that the situation will remedy itself once she is being properly treated. Now, it's not to say that she won't get sick on occasion, like with my husband he always gets a nasty cold in the winter months and he just has to take it easy for a few days (you or your hubbie might have to stay home with her just so she gets optimum treatment and rest during that time-Although we moved from Washington to California last year and he didn't have one single nasty winter cold. With you living in Texas, you might find that the warmer weather will do her good.
I believe you metioned that your daughter was being seen by a specialist. Some of the recommendations your doctor is giving you has me raising my eyebrow a bit though. I imagine doctors and clinics will be a topic of conversation when somebody from your local CF chapter gets back to you.
I am not sure how medicaid works in Texas (another good question for other parents you get to talk to) but I will see if I can find anything out. Just to give you some possible hope though, in Washington our medicaid was based slightly off of income, but moreso off of someone's medical condition. They took the total amount of income we made, and then took a lot of deductions like a portion of our rent, extra expenses for special dietary needs, a standard deduction off of our earned income, any out of pocket medical expenses...and probably a few others that I can't remember. After all of that we finally qualified and the medicaid picked up all of our medication and doctor copays, plus paid for anything our insuranc wouldn't cover. Living in CA is a different story, they don't give all the income deductions so we didn't qualify, but there is a program run by the state of california that covers people with CF (and some other illnesses). Texas might have something like that as well.
I also have to agree with what the last poster said about the carrier situation. A positive sweat test is a confirmaiton of CF, especially with all of the illnesses your daughter has been having. It is certainly wishful thinking on your sisters part, and I wish for you that it were true. But since the sweat test was 95, it is for sure. Now as far as the blood testing for the mutations, if they can only find one mutation initially, I would recommend that you don't take it to mean too much. There are over 1000 CF mutations that are currently know, but most labs only test for the most common 25, then there is an extended panel that can usually be orderd through a specialist but that as well only tests for about 80-100 mutations. There is a laboratory that tests for about 1000, and I am sure that someone on this site can post it somewhere, I always forget what it is called. If your daughters mutations aren't some of the most common, you might have to go to the independent laboratory if you are interested in what they are.
Also, you should really suggest that any of your biological brothers and sisters be tested for the gene as well, and also siblings on your husband side. Because if you and your husband have the mutation, the statistics say that both of your sibilings might also as well.
<a target=new class=ftalternatingbarlinklarge href="http://www.hhsc.state.tx.us/chip/index.html">http://www.hhsc.state.tx.us/chip/index.html</a> This is a good site to visit, it's about Childrens health insurance in Texas for those who make too much to qualify for medicaid.
<a target=new class=ftalternatingbarlinklarge href="http://www.texcarepartnership.com/CHIP-Main-Page.htm">http://www.texcarepartnership.com/CHIP-Main-Page.htm</a> Here is more information on the above link, with a number you can call and an application you can download.
<a target=new class=ftalternatingbarlinklarge href="http://www.hhsc.state.tx.us/Medicaid/index.html">http://www.hhsc.state.tx.us/Medicaid/index.html</a> This link is to the main texas medicaid page, I found the above links on the CHIP there,
Hope this helps you do some research.
Julie (wife to Mark 24 w/CF)
