Need some info please

anonymous

New member
Hello , My name is Kimberly. My son just turned 2 years old and Since September he has had pneumonia 3 times and has been admitted to the hospital 2 times for 4 days each. He coughs and wheezes alot and he is on two different nebulizer medicines to use daily. We found out he has asthma and this past monday at his doctor appointment, his doctor said she wants him seen at Childrens Hospital to see a Pulmologist to get checked out. Plus she said she wants them to do a Sweat test to check for CF.

I admit I was dumbfounded , I didn't even know what CF was until she mentioned it. I tried looking around on the net for good refrences and have to admit I am a little afraid now. I read that CF can cause you to be skinnier then normal, does that go for everyone? My son just turned 2 and he weighs 31 lbs, not sure on his height. He is not really skinny at all . I just would like to know all I can before the test. His doctor is supposed to call and set the appointment up and then call and let us know when.

He has a really hard time at night time sleeping, he coughs really bad and wheezes in his sleep.

I can take any info you might have on this .
Thank You so much.

Kimberly
Mom to Derek
 

anonymous

New member
Hello , My name is Kimberly. My son just turned 2 years old and Since September he has had pneumonia 3 times and has been admitted to the hospital 2 times for 4 days each. He coughs and wheezes alot and he is on two different nebulizer medicines to use daily. We found out he has asthma and this past monday at his doctor appointment, his doctor said she wants him seen at Childrens Hospital to see a Pulmologist to get checked out. Plus she said she wants them to do a Sweat test to check for CF.

I admit I was dumbfounded , I didn't even know what CF was until she mentioned it. I tried looking around on the net for good refrences and have to admit I am a little afraid now. I read that CF can cause you to be skinnier then normal, does that go for everyone? My son just turned 2 and he weighs 31 lbs, not sure on his height. He is not really skinny at all . I just would like to know all I can before the test. His doctor is supposed to call and set the appointment up and then call and let us know when.

He has a really hard time at night time sleeping, he coughs really bad and wheezes in his sleep.

I can take any info you might have on this .
Thank You so much.

Kimberly
Mom to Derek
 

Emily65Roses

New member
Not every CF patient is skinny. I've always had GI problems, but never been too underweight. Now I'm quite average on weight. Each person's CF is different from the next, due to mutations, and environments, and meds, and doctors, etc etc.
 

Emily65Roses

New member
Not every CF patient is skinny. I've always had GI problems, but never been too underweight. Now I'm quite average on weight. Each person's CF is different from the next, due to mutations, and environments, and meds, and doctors, etc etc.
 

anonymous

New member
Hello,
kimberly your story is what I went through about 2 yrs ago. My Daughter is 4 now and was diagnoised with CF at age 2.She was always very chubby as an infant. The Doctors told us she had asthma and I was just a first time mom who worried too much.Does your child taste salty on his forehead?He probably would have oily or not so formed stool.My little girl would also cough so much and would throw up green mucas. I don't know if this will help you out any. I know that it is worring you to death but try not get to upset untill you know for sure. I will pray for you and your family.


Heather mother 4yr w/cf
 

anonymous

New member
Hello,
kimberly your story is what I went through about 2 yrs ago. My Daughter is 4 now and was diagnoised with CF at age 2.She was always very chubby as an infant. The Doctors told us she had asthma and I was just a first time mom who worried too much.Does your child taste salty on his forehead?He probably would have oily or not so formed stool.My little girl would also cough so much and would throw up green mucas. I don't know if this will help you out any. I know that it is worring you to death but try not get to upset untill you know for sure. I will pray for you and your family.


Heather mother 4yr w/cf
 

anonymous

New member
Kimberly, not all people with CF are skinny, but it is one of the more common side effects because of the digestive problems associated with CF. My husband is 24, 6ft and weighs 185-190, pretty darn average. But I would also attribute that to his crazy diet, the man eats pretty much every hour, even when he is not hungry.
As for the last poster, she's defintely right, those are some of the tell tale signs of CF, but some peope go undiagnosed for a long time. I know it's much easier for me to say this than for you to do, but I wouldn't be too worried or concerned at this point. Make sure you keep on your doctor about getting the sweat test done though, I know most of the anxiety you are having is probably from that. and if the results come back and your son does have CF, there are so many things out there now that keep people living long and healthy. Back in the 80's when my husband was born, they didn't think he would live past a few years, definetly not past 18, and now he's 24 and we are planning for a family. His doctors are thinking hes going to be 40-50 before any major health concerns start arrising-just because of all the technology today. He never even thought he would be alive at this point. So I know it's hard, but dont' fear yet what you dont' know. And when the test results come back, and you need a support system, this site is great!

I know I can't relate exaclty because I have a spouse with CF and not a child, but any questions or concerns you have, we are all hear to listen, give advice, recommendations, point you in the direction of other helpful sites or information and encourage you. i will be thinking about you and praying for good results from the test!

Julie
 

anonymous

New member
Kimberly, not all people with CF are skinny, but it is one of the more common side effects because of the digestive problems associated with CF. My husband is 24, 6ft and weighs 185-190, pretty darn average. But I would also attribute that to his crazy diet, the man eats pretty much every hour, even when he is not hungry.
As for the last poster, she's defintely right, those are some of the tell tale signs of CF, but some peope go undiagnosed for a long time. I know it's much easier for me to say this than for you to do, but I wouldn't be too worried or concerned at this point. Make sure you keep on your doctor about getting the sweat test done though, I know most of the anxiety you are having is probably from that. and if the results come back and your son does have CF, there are so many things out there now that keep people living long and healthy. Back in the 80's when my husband was born, they didn't think he would live past a few years, definetly not past 18, and now he's 24 and we are planning for a family. His doctors are thinking hes going to be 40-50 before any major health concerns start arrising-just because of all the technology today. He never even thought he would be alive at this point. So I know it's hard, but dont' fear yet what you dont' know. And when the test results come back, and you need a support system, this site is great!

I know I can't relate exaclty because I have a spouse with CF and not a child, but any questions or concerns you have, we are all hear to listen, give advice, recommendations, point you in the direction of other helpful sites or information and encourage you. i will be thinking about you and praying for good results from the test!

Julie
 

Emily65Roses

New member
Just to add my quick statistics. When I was born my parents were told I wouldn't live long enough to graduate high school. Now I'm going on 21, and still going pretty strong. And I'm in college. So *sticks tongue out* PLLLLPPHHFTTTTTTTT <img src="i/expressions/face-icon-small-happy.gif" border="0">
 

Emily65Roses

New member
Just to add my quick statistics. When I was born my parents were told I wouldn't live long enough to graduate high school. Now I'm going on 21, and still going pretty strong. And I'm in college. So *sticks tongue out* PLLLLPPHHFTTTTTTTT <img src="i/expressions/face-icon-small-happy.gif" border="0">
 

anonymous

New member
My son just turned 2 and was diagnosed at 18 months. One piece of advice I give to you, is to see if you can have the Sweat Test done at a CF clinic. When my son was 12 months he was tested at a regular hospital. They ruled CF out and after fussing with my Dr, he finally sent me to a CF clinic and they diagnosed him. It is scarey. Keep in mind that they may do a blood test if the sweat test comes back borderline. That wait is a killer month long, but will give you a definite answer.

Keep your chin up and be strong for your child. If it is CF treatments and meds will help. My son has pancreas and resp problems and they called today to tell me that his liver is abnormal too. There's is always a lot to learn. But my son went from 17 pounds and losing in May when he was diagnosed to a whopping 26 pounds now, because we know what to do for him.

Best wishes to you and your family!

Shelly
 

anonymous

New member
My son just turned 2 and was diagnosed at 18 months. One piece of advice I give to you, is to see if you can have the Sweat Test done at a CF clinic. When my son was 12 months he was tested at a regular hospital. They ruled CF out and after fussing with my Dr, he finally sent me to a CF clinic and they diagnosed him. It is scarey. Keep in mind that they may do a blood test if the sweat test comes back borderline. That wait is a killer month long, but will give you a definite answer.

Keep your chin up and be strong for your child. If it is CF treatments and meds will help. My son has pancreas and resp problems and they called today to tell me that his liver is abnormal too. There's is always a lot to learn. But my son went from 17 pounds and losing in May when he was diagnosed to a whopping 26 pounds now, because we know what to do for him.

Best wishes to you and your family!

Shelly
 

anonymous

New member
He goes to the Childrens Hosptial for his appoinment on November 19th. They will do his Sweat Test there and they said they have a certified CF Clinic so hopfully they will get the test done right. He is sick again, after his last spell the last weekend of October. He is coughing, and he is wheezing a little bit. I hope his pneumonia is not coming back again.

Thanks everyone for you words.

Kimberly
 

EmilysMom

New member
Kimberly,
Let us know after November 19th how things went and how you are feeling. This is a great support site for those who live with CF in their lives.
AND EMILY....you kill me.....LOL
 
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