Hi. My name is Heather, and my son EJ is set to get a sweat test done next week. We have battled GERD and milk allergy since he was born. He is 3.5 months old now. Nothing seems to be helping the sinus congestion, his chest is clear, but his bronchioles are fluid filled on x-ray, and his sweat is very salty. I am so scared for him. How did you handle it? I am sure you are all a great bunch of folks, but I really hope that I don't have to stay. I will be praying for ya'll...If you are so inclined, please do the same for us.
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- Thread starter EJzMomma
- Start date
Heather,
Your EJ will be the same little boy whether the sweat test comes back pos. or neg. If he is positive for CF, your heart will break and you will go through so many emotions. I liken it to a death and the steps you go through emotionally...denial, anger, etc. But, one good thing about a positive dx, is... YOU FINALLY KNOW what's wrong with your child. You can give him medicines now that will stop his pain.
My son Hunter wasn't dx, until he was 5 months old. I knew my little guy was in pain, he cried and vomited all the time. But the doc said the same thing everytime I came in upset : "it's just reflux & he'll grow out of it" By the time I got into a specialist, Hunter's organs had started shutting down one by one and he almost died. He was in the NICU for 3 weeks, and the childrens hospital for 2 months. I don't tell you this to scare you but to let you know that he didn't have to go through all this!! Most CFer's don't because they get dx earlier and given enzymes and proper treatment.
Hunter will turn 1 on January 8. Nobody knows that he has CF by looking at him. He's a little small for his age, because of how sick he was when he was little, but other than that he is just like the other babies, except cuter <img src="i/expressions/face-icon-small-blush.gif" border="0">) I know he will have to go through a lot, but we don't think too far ahead, because we don't know what the future holds, and I found that I miss too much of what I have today when I'm worrying about tomorrow.
Every time I look at Hunter I know that he is a gift, a miracle. He could have been taken from me, past away, at 5 months old in that hospital, but he didn't and I am very greatful that he is here, CF and all. There are still days where I cry, but they are fewer. His meds and treatments have become routine and life feels normal again. I get to focus on his new tooth and his first steps now, and I don't have to wonder "why is crying" and "why won't he sleep" and "what's wrong with my baby" anymore because he is happy and healthy now. Healthy even though he has CF. I have hope for his future. There are new treatments in the final stages of development right now, and we are so excited to see the results.
If you get a neg. result, I will be happy for you and hope you find an answere to EJ's problems. But, if you get a positive result, know that you are not alone and that you will get through this and you have found a support system here.
Feel free to email me w/any questions or if you need to talk.
Take Care & Best of luck
Nedda, mom to Hunter 11 months, dx w/CF, GERD, FTT
greg_n_nedda@msn.com
Your EJ will be the same little boy whether the sweat test comes back pos. or neg. If he is positive for CF, your heart will break and you will go through so many emotions. I liken it to a death and the steps you go through emotionally...denial, anger, etc. But, one good thing about a positive dx, is... YOU FINALLY KNOW what's wrong with your child. You can give him medicines now that will stop his pain.
My son Hunter wasn't dx, until he was 5 months old. I knew my little guy was in pain, he cried and vomited all the time. But the doc said the same thing everytime I came in upset : "it's just reflux & he'll grow out of it" By the time I got into a specialist, Hunter's organs had started shutting down one by one and he almost died. He was in the NICU for 3 weeks, and the childrens hospital for 2 months. I don't tell you this to scare you but to let you know that he didn't have to go through all this!! Most CFer's don't because they get dx earlier and given enzymes and proper treatment.
Hunter will turn 1 on January 8. Nobody knows that he has CF by looking at him. He's a little small for his age, because of how sick he was when he was little, but other than that he is just like the other babies, except cuter <img src="i/expressions/face-icon-small-blush.gif" border="0">) I know he will have to go through a lot, but we don't think too far ahead, because we don't know what the future holds, and I found that I miss too much of what I have today when I'm worrying about tomorrow.
Every time I look at Hunter I know that he is a gift, a miracle. He could have been taken from me, past away, at 5 months old in that hospital, but he didn't and I am very greatful that he is here, CF and all. There are still days where I cry, but they are fewer. His meds and treatments have become routine and life feels normal again. I get to focus on his new tooth and his first steps now, and I don't have to wonder "why is crying" and "why won't he sleep" and "what's wrong with my baby" anymore because he is happy and healthy now. Healthy even though he has CF. I have hope for his future. There are new treatments in the final stages of development right now, and we are so excited to see the results.
If you get a neg. result, I will be happy for you and hope you find an answere to EJ's problems. But, if you get a positive result, know that you are not alone and that you will get through this and you have found a support system here.
Feel free to email me w/any questions or if you need to talk.
Take Care & Best of luck
Nedda, mom to Hunter 11 months, dx w/CF, GERD, FTT
greg_n_nedda@msn.com
Hi, I'm very sorry you have to experience this. I went through a similar situation as Samantha was diagnosed at three months. Her symptoms were different. But I knew something was wrong. She was just stooling all day long, getting very thin and pale. The worst experience was the day I looked into her eyes and she just seemed like she was screaming to me, "please help me!" I'll never forget that look. Although I was devastated by the diagnosis, I was relieved that I knew what was wrong and how to treat it. I also was so grateful to have the team of CF professionals who have been with us throughout this journey.
I hope that you find the answers you are looking for. If it is CF, my best advice is to educate yourself the most you can about the disease. It takes away a lot of the wondering and fear. Also, don't rely that all the information you can find on the Web is accurate or up to date. I read an article that said that babies with CF who cultured pseudomonas before age 1, only had a 10% chance to live to age ten. I was mortified as Sami cultured it at six months. Luckily I asked our pulmonologist and he said, "Oh no, that is simply NOT true." "That article must be ancient!" He told us to feel free to bring him any questionable info that we read.
Our first year after the diagnosis was very difficult, and our team kept saying, "Next year, you'll be in a better place." I have to admit that this statement has finally become a reality.
Good Luck!
Maria (mother of Samantha, 21 months, w/CF)
I hope that you find the answers you are looking for. If it is CF, my best advice is to educate yourself the most you can about the disease. It takes away a lot of the wondering and fear. Also, don't rely that all the information you can find on the Web is accurate or up to date. I read an article that said that babies with CF who cultured pseudomonas before age 1, only had a 10% chance to live to age ten. I was mortified as Sami cultured it at six months. Luckily I asked our pulmonologist and he said, "Oh no, that is simply NOT true." "That article must be ancient!" He told us to feel free to bring him any questionable info that we read.
Our first year after the diagnosis was very difficult, and our team kept saying, "Next year, you'll be in a better place." I have to admit that this statement has finally become a reality.
Good Luck!
Maria (mother of Samantha, 21 months, w/CF)
Hello Heather,
They should be able to give you the results of the sweat test after about 1 hour. That was our experience when our 3.5 year old was tested (who was negative). Are you going to a CF accredited center for the test? If not, I am not sure if these tests need to be sent out to be reviewed.
I am praying for your family that the test is negative. We found out while I was pregnant at 19 weeks that our son was to be born with CF. The future is bright for CF'ers. Hang in there. We are all thinking of you and your family.
Paula
Mom to Bennett (4 months w/cf and Jameson 4 w/o CF).
They should be able to give you the results of the sweat test after about 1 hour. That was our experience when our 3.5 year old was tested (who was negative). Are you going to a CF accredited center for the test? If not, I am not sure if these tests need to be sent out to be reviewed.
I am praying for your family that the test is negative. We found out while I was pregnant at 19 weeks that our son was to be born with CF. The future is bright for CF'ers. Hang in there. We are all thinking of you and your family.
Paula
Mom to Bennett (4 months w/cf and Jameson 4 w/o CF).