HELP!!!!!!!!!!!!!

[kpc]

I have a 6 1/2 momth old little boy. From day one he was not breathing right. When I questions this my DR. listened to him and said everything was good. At about 2 months, Joseph woke both my husband (who sleeps like the dead) and I up in the middle of the night with a gasping sound. We turned on the light and picked him up. He wasn't breathing right. He would take a couple of breaths and then gasp. The only reason we didn't take him to the ER that night was because he wasn't blue, not even red. He would look at us and smile. That morning I called the pedi. When we went in I was told he probably has reflux and it was sitting in his throat and taking his breath away. He was put on Zantac. I thought that made sence. We were sent to a GI who insists this does not reflux. She sent us to a Pulm. When I took him, the doctor spent 1 1/2 hrs with us. She did an X-ray, which came out normal. She KEPT asking if we had CF in the family. Neither of us do. Anyways, the Pulm. sent us to an ENT. He also couldn't find anything.
This past Monday Joseph had 2 tests done. One by ENT who said everything was great. But, the Pulm. wan't good at all. She said he had swelling, alot of mucas, and an abnormal amount of secreations. She had a sweat test done. The results were way below any chance. As we were talking to the resident was pagedby the doctor. Something had started to grow from the test. . We were told he had the beginning of broncitus. Now all of a sudden this need to be done again??????????????( I DIDN'T KNOW BRONC. GREW)
When Joseph gasps for air he can just be sitting with you, sleeping, of have a coughing attack with gaging and gasping. hE NOW DOES TURN RED. h\HIS EYES GET VERY BIG AND WATERY.

 

[kpc]

I have a 6 1/2 momth old little boy. From day one he was not breathing right. When I questions this my DR. listened to him and said everything was good. At about 2 months, Joseph woke both my husband (who sleeps like the dead) and I up in the middle of the night with a gasping sound. We turned on the light and picked him up. He wasn't breathing right. He would take a couple of breaths and then gasp. The only reason we didn't take him to the ER that night was because he wasn't blue, not even red. He would look at us and smile. That morning I called the pedi. When we went in I was told he probably has reflux and it was sitting in his throat and taking his breath away. He was put on Zantac. I thought that made sence. We were sent to a GI who insists this does not reflux. She sent us to a Pulm. When I took him, the doctor spent 1 1/2 hrs with us. She did an X-ray, which came out normal. She KEPT asking if we had CF in the family. Neither of us do. Anyways, the Pulm. sent us to an ENT. He also couldn't find anything.
This past Monday Joseph had 2 tests done. One by ENT who said everything was great. But, the Pulm. wan't good at all. She said he had swelling, alot of mucas, and an abnormal amount of secreations. She had a sweat test done. The results were way below any chance. As we were talking to the resident was pagedby the doctor. Something had started to grow from the test. . We were told he had the beginning of broncitus. Now all of a sudden this need to be done again??????????????( I DIDN'T KNOW BRONC. GREW)
When Joseph gasps for air he can just be sitting with you, sleeping, of have a coughing attack with gaging and gasping. hE NOW DOES TURN RED. h\HIS EYES GET VERY BIG AND WATERY.

 

[kpc]

I have a 6 1/2 momth old little boy. From day one he was not breathing right. When I questions this my DR. listened to him and said everything was good. At about 2 months, Joseph woke both my husband (who sleeps like the dead) and I up in the middle of the night with a gasping sound. We turned on the light and picked him up. He wasn't breathing right. He would take a couple of breaths and then gasp. The only reason we didn't take him to the ER that night was because he wasn't blue, not even red. He would look at us and smile. That morning I called the pedi. When we went in I was told he probably has reflux and it was sitting in his throat and taking his breath away. He was put on Zantac. I thought that made sence. We were sent to a GI who insists this does not reflux. She sent us to a Pulm. When I took him, the doctor spent 1 1/2 hrs with us. She did an X-ray, which came out normal. She KEPT asking if we had CF in the family. Neither of us do. Anyways, the Pulm. sent us to an ENT. He also couldn't find anything.
This past Monday Joseph had 2 tests done. One by ENT who said everything was great. But, the Pulm. wan't good at all. She said he had swelling, alot of mucas, and an abnormal amount of secreations. She had a sweat test done. The results were way below any chance. As we were talking to the resident was pagedby the doctor. Something had started to grow from the test. . We were told he had the beginning of broncitus. Now all of a sudden this need to be done again??????????????( I DIDN'T KNOW BRONC. GREW)
When Joseph gasps for air he can just be sitting with you, sleeping, of have a coughing attack with gaging and gasping. hE NOW DOES TURN RED. h\HIS EYES GET VERY BIG AND WATERY.

 

[JazzysMom]

I am concerned about about a few things. The fact that they focused on a family history of CF when many dx have no known history & if the sweat test was done by an accredited CF center. If it wasnt done by an accredited CF center I suggest doing so &/or get a genetic screen done. You are better off being over cautious & finding out its not CF then to wait too long if it is CF!

 

[JazzysMom]

I am concerned about about a few things. The fact that they focused on a family history of CF when many dx have no known history & if the sweat test was done by an accredited CF center. If it wasnt done by an accredited CF center I suggest doing so &/or get a genetic screen done. You are better off being over cautious & finding out its not CF then to wait too long if it is CF!

 

[JazzysMom]

I am concerned about about a few things. The fact that they focused on a family history of CF when many dx have no known history & if the sweat test was done by an accredited CF center. If it wasnt done by an accredited CF center I suggest doing so &/or get a genetic screen done. You are better off being over cautious & finding out its not CF then to wait too long if it is CF!

 

[Alyssa]

ditto on the asking about family history -- many many people with CF have NO other family members w/cf -- it is something to ask from the other side of the coin, but it should never be considered as a reason for not having CF.

You can read my blog about normal sweat test numbers -- insist on full genetic testing and keep up with the pulmo doctor -- a baby should not have mucus in his lungs.... CF or not someone needs to be following him very closely.

 

[Alyssa]

ditto on the asking about family history -- many many people with CF have NO other family members w/cf -- it is something to ask from the other side of the coin, but it should never be considered as a reason for not having CF.

You can read my blog about normal sweat test numbers -- insist on full genetic testing and keep up with the pulmo doctor -- a baby should not have mucus in his lungs.... CF or not someone needs to be following him very closely.

 

[Alyssa]

ditto on the asking about family history -- many many people with CF have NO other family members w/cf -- it is something to ask from the other side of the coin, but it should never be considered as a reason for not having CF.

You can read my blog about normal sweat test numbers -- insist on full genetic testing and keep up with the pulmo doctor -- a baby should not have mucus in his lungs.... CF or not someone needs to be following him very closely.

 

[anonymous]

Hi there, my brother had cystic fibrosis and he wasnt diagnosed untill he was about 11 months old and they did every test going on him but they couldnt find a thing, He used to gag and gasp for air often vomiting. I strongly suggest you go ta a cf center and try again but do not give up untill you have an answer. My brother unfornunetly passed away when he was 16 years old due to his passport becoming infected resulting in septacimia. I hope you can get it sorted quickly no one should have to wait in agony as you are. good luck xx xx

 

[anonymous]

Hi there, my brother had cystic fibrosis and he wasnt diagnosed untill he was about 11 months old and they did every test going on him but they couldnt find a thing, He used to gag and gasp for air often vomiting. I strongly suggest you go ta a cf center and try again but do not give up untill you have an answer. My brother unfornunetly passed away when he was 16 years old due to his passport becoming infected resulting in septacimia. I hope you can get it sorted quickly no one should have to wait in agony as you are. good luck xx xx

 

[anonymous]

Hi there, my brother had cystic fibrosis and he wasnt diagnosed untill he was about 11 months old and they did every test going on him but they couldnt find a thing, He used to gag and gasp for air often vomiting. I strongly suggest you go ta a cf center and try again but do not give up untill you have an answer. My brother unfornunetly passed away when he was 16 years old due to his passport becoming infected resulting in septacimia. I hope you can get it sorted quickly no one should have to wait in agony as you are. good luck xx xx

 

[folione]

I sure am sorry to hear of your baby's troubles and hope it gets cleared up soon.

Getting accurate sweat tests at that age can be tricky so I'd second the suggestion that it be done at an accredited CF center. The absence of family history does not mean much since testing for carriers is a pretty recent thing and if you go back just 2 generations, lots of CF was not diagnosed.

I'd also say it's possible to have a lung infection and not have CF, so I think it's premature to assume CF just because of the breathing trouble. I, for one, had terrible bronchitis many times as a child and don't have CF and got over it. Are they diagnosing for RSV, which from the sounds of all the posters on our Pediatrician's wall seems like it can cause these kinds of troubles if it gets out of hand. Are there any of the other typical/common signs of CF such as the baby having greasy/big poos after every meal and eating like a horse and not gaining weight? like tasting very salty when you lick his skin?

My son w/CF had terrible reflux for his 1st year and we had to pretty much hold him on our chest day and night or his food would just run out of his stomach and up to his throat, etc. Have you tried propping up or holding up your boy while he's sleeping for a few nights to see if that helps?

 

[folione]

I sure am sorry to hear of your baby's troubles and hope it gets cleared up soon.

Getting accurate sweat tests at that age can be tricky so I'd second the suggestion that it be done at an accredited CF center. The absence of family history does not mean much since testing for carriers is a pretty recent thing and if you go back just 2 generations, lots of CF was not diagnosed.

I'd also say it's possible to have a lung infection and not have CF, so I think it's premature to assume CF just because of the breathing trouble. I, for one, had terrible bronchitis many times as a child and don't have CF and got over it. Are they diagnosing for RSV, which from the sounds of all the posters on our Pediatrician's wall seems like it can cause these kinds of troubles if it gets out of hand. Are there any of the other typical/common signs of CF such as the baby having greasy/big poos after every meal and eating like a horse and not gaining weight? like tasting very salty when you lick his skin?

My son w/CF had terrible reflux for his 1st year and we had to pretty much hold him on our chest day and night or his food would just run out of his stomach and up to his throat, etc. Have you tried propping up or holding up your boy while he's sleeping for a few nights to see if that helps?

 

[folione]

I sure am sorry to hear of your baby's troubles and hope it gets cleared up soon.

Getting accurate sweat tests at that age can be tricky so I'd second the suggestion that it be done at an accredited CF center. The absence of family history does not mean much since testing for carriers is a pretty recent thing and if you go back just 2 generations, lots of CF was not diagnosed.

I'd also say it's possible to have a lung infection and not have CF, so I think it's premature to assume CF just because of the breathing trouble. I, for one, had terrible bronchitis many times as a child and don't have CF and got over it. Are they diagnosing for RSV, which from the sounds of all the posters on our Pediatrician's wall seems like it can cause these kinds of troubles if it gets out of hand. Are there any of the other typical/common signs of CF such as the baby having greasy/big poos after every meal and eating like a horse and not gaining weight? like tasting very salty when you lick his skin?

My son w/CF had terrible reflux for his 1st year and we had to pretty much hold him on our chest day and night or his food would just run out of his stomach and up to his throat, etc. Have you tried propping up or holding up your boy while he's sleeping for a few nights to see if that helps?

 

[kpc]

Thank you for the reply. Joseph has been sleeping sitting up for 6 months now. We are at Childrend in Boston. I talked to the ped. today. They pit him on an inhailer to see if that helps. They are doing another sweat test because only one arm sweat enough. Also they told me today they are 90-95% sure it is not CF, I hipoe they are right.
Katie

 

[kpc]

Thank you for the reply. Joseph has been sleeping sitting up for 6 months now. We are at Childrend in Boston. I talked to the ped. today. They pit him on an inhailer to see if that helps. They are doing another sweat test because only one arm sweat enough. Also they told me today they are 90-95% sure it is not CF, I hipoe they are right.
Katie

 

[kpc]

Thank you for the reply. Joseph has been sleeping sitting up for 6 months now. We are at Childrend in Boston. I talked to the ped. today. They pit him on an inhailer to see if that helps. They are doing another sweat test because only one arm sweat enough. Also they told me today they are 90-95% sure it is not CF, I hipoe they are right.
Katie

 

[Debi]

You may want to push for a blood test instead of the sweat test. I never tested positive for cf until the gene was identified and they could determine it with a blood test. And, hopefully, the blood test will also come back negative for cf. Still, be persistent and get those lungs cleared up. I'm sorry you have to go through this.

 

[Debi]

You may want to push for a blood test instead of the sweat test. I never tested positive for cf until the gene was identified and they could determine it with a blood test. And, hopefully, the blood test will also come back negative for cf. Still, be persistent and get those lungs cleared up. I'm sorry you have to go through this.