Not quite sure yet????????????

[dawnalex]

Hello,I am new here. I wanted to get some information on this disease. Anything that anyone can tell me will help!! I have an 8 month old daughter having problems, and her doctor ordered her to be tested for this disease. I will tell you the problems she is having,and maybe someone can say if they have had the same problems. Since October she has been in and out of the hospital with breathing problems, we have tried all the medications, and they do not seem to work, she seems to get these breathing problems especially when she gets sick from my other children who attend school, and from her daycare. She always sounds noisy in the chest, and she can not seem to cough hard enough to get it out, that is what it sounds like anyways. She takes breathing treatments every 3 hours when she is sick. Another thing I have noticed is severe constipation, that she was also put on medication for. And her stools are quit big, like my 8-year-olds. Does this sound like anyone??? I know I am driving myself nuts, and I will until I get the test results back. Does anyone know how long it will take to get the Sweat test results back???? My doctor set this up, but did not really explain the seriousness of this disease. I came on here to read about it, and was left crying until 4 a.m. The digestinal problems, and the breathing problems. They thought at first she had asthma, but the normal treatments do not help. As of now she has been on steroids for 11 days, she is on a very hardcore inhaled steroid called Atrovent, she is on Trimox, and she is on Zantac, she is also on Albuterol. These treatments are not helping her. Unfortunately, her father is a very nasty navy man, who has since been to jail for his nastyness, and I have had no contact with him since I found out I was pregnant, so I am unable to ask him if this runs in his family, nor do I want to. I feel sooo lost. Just from reading about this, it sounds just like her.. At first they thought she might be aspirating her formula in, and now he is treating her for reflux disease with the zantac just in case just in case she is refluxing. I am also due to go to California in a week, and I am reading about all the travel information, and just like what I red, I am taking her inhaler with me, and I am worried they will give me trouble. I am also worried that they will not let me carry it on. The airlines was saying to pack it in the luggage underneath, but if I do not give her the treatments every 3 hours, we will be in serious trouble. Please anyone one that might be able to help me. I would appreciate any information given. And I was wondering when you fly are you all allowed to take it on the plane in the carry on. Alaska told me underneath, but I am sure that there is someone on here with the prior experience. Thanks in advance for the help.Dawn

 

[anonymous]

If you are talking about a nebulizer, you can bring it in a carry-on. Have your doc write a generic note to show to airport security. You shouldn't have any real problems other than the security people not knowing what it is. It's best to carry-on any way because if could be damaged in luggage.Make sure your daughter is tested at an acredited CF center. A sweat test is most commonly used, but it doesn't always make the diagnosis because there are many different mutations of the gene and the sweat test is testing for a certian sodium level. A blood test is best.Many people are clueless that they carry the CF gene, so don't feel obligated to ask her biological father if he knows anything. If she tests positive then you know that BOTH of you are carriers.It sounds like sterotypical CF symptoms.Debbie22 yr old w/ CF

 

[anonymous]

Hi Dawn. My daughter had a lot of the same breathing problems until she was diagnosed at 18 months. She needed albuterol every 2 hrs around the clock. Lots of lung infections. Everything turned around for her after being diagnosed and getting the proper treatments. The sweat test results unsually come back the same day. Ours were back withing 2 hrs. Where do you live? Try not to worry( I know easier said than done). If it is CF, a proper diagnosis will be a good thing to her feelling better. Hang in there.

 

[dawnalex]

Hello again,I live in Everett Washington. I will be getting the sweat test next Thursday at Childrens Hospital in Seattle, which is the best, I believe anyways. Did the clinic where you had the sweat test done tell you, or did your private physician tell you, I want to know the results as soon as possible. I will be at Childrens at 9 a.m. for around 3 hours so that they can do all kinds of pulmonary tests on her. What will I tell my other children if the test is positive? How do I tell my kids about this disease? I have a 13 yr old, a 12 yr old, and an 8 yr old, they will be devistated. I will have to tell my kids that her sissy has a disease that will eventually kill her. I have always had healthy children, so this is just devistating. What was the certain thing that finally set the doctor off about testing your child? Thank you so much for your responces, and help. It is very nice to know that there are web sites like these. I hope that if this test is positive, I can handle this!Thank you again,Dawn

 

[anonymous]

I don't know if anyone is online right now but I will try to help. I don't have a cf diagnoisis but I have all the symptoms. I have been reading about cf on these forums for a couple months. I am 40 years old. Everyone has told me to get the genetic testing. Here is my motto I tell everyone. Part of it is... don't worry until you have to. First, I would say if I am not mistaken, that it would be the Doctor that would give you the results. If it is cf don't panic. Reading is good. Educate yourself but give yourself a time limit or you will overwhelm yourself. Don't panic about any statistics you have read. They are only statistics and not people. They have made great strides in helping this disease. It could be possible in your daughters lifetime there maybe even greater advancement for a cure or extending life span even farther. Everyone on the forum suggests that if it is cf you get her to a cf clinic. They specialize in the treatment of cf. You will be able to handle it. Just take it one step at a time. Your other children already know she is ill. They don't need to know everything all at once either. Anyway that of course is my personal opinion. Find an adult that you can lean on for support. It is good that she is young and getting tested. This way you can get the best possible treatment for her early on. And then she can get to feeling better quickly. There are so many others who will be able to help you on this forum better than myself. But I know how it is waiting for someone to comment on what you have said. Take care and please let us know the outcome of the test.

 

[anonymous]

Hi Dawn, I'm the one that asked where you live. I live in Oregon. My daughter with Cf is 7, I also have 2 boys 13, and 11 without CF. My sons know all about the seriousness of CF. I don't go into time lines though. I just tell them that only God knows when it's any of our time. I have to remind myself that my daughter could outlive us all, we have no idea what the future holds. New treatments are being found all the time. As for your question about who told me the diagnosis, I was told over the phone by another doc because our normal pediatrician was off the day of the sweat test. I would have rather been told in person. I would love to help you in any way I can. You can also e-mail me privatly at dare2write101@yahoo.com Michelle