Hope you can help me

kpc

New member
I have a 7 month little boy. Since day 1 he would have coughing fits. During this time it would sound very flemmy and he would gasp for air. This would happen throughout the day. He also would gasp for air without coughing. His pedi. says he has reflux. Put him on zantac and sent him to a GI. ( Over the past 6 months it has done nothing, he also has been on prylocek) His GI says he doesn't have reflux. She sent him to a PULM. Who in turn sent him to an ENT. The ENT checked for inmature cords. They were fine. He wanted to do scope when he had his hernias(SP) fixed. Also his PULM. did a scope that day. The ENT came back fine , no signes of reflux. His PULM. didn't go that well. They found alot of swelling, inflamation,an abnormal amout of secreations, blood, and food in his lungs. He stayed in the hospital over night and the next afternoon he had a sweat test. They only got enough sweat off one arm. That number was 12. As the resident was telling us the results and we were asking our final questions, she got a page. When she came back from answering it we were told he had broncitis(SP) and they needed to do another sweat test (only one arm sweat enough). They doctors put him on agmentium. He was on that for about 1 week with very little change. Also in this time he was put in an inhaler. (Being treated like asmah(SP)) That following Monday I reveived a call thay he was DIRECTLY exposed to Whooping cough. His anti. was changed to Zysthromax, and cont. the inhaler. All coughing stopped! He has been off the anti. for 4 days and the cough and gasping is back!!!!!!!!!! We went to his Gi today,she still says it's not reflux. (HE WEIGHED IN AT 18.13pds AND 27IN)

In the next few weeks we will be doing another sweat test and a sleep study with a GI probe. (PULM. wants to try to get the coughing and gasp on tape)

When I was preg. with my first child I had the prenatel screening. That test came out neg. I believe both my kids also were tested at birth. (Massachusetts) I never heard anything so I asume it was neg.

I guess what I'm trying to say is what kind of questions should I be asking these doctors. And should we prepare our selves? Deep down I KNOW something is wrong with my son.

Katie
 

kpc

New member
I have a 7 month little boy. Since day 1 he would have coughing fits. During this time it would sound very flemmy and he would gasp for air. This would happen throughout the day. He also would gasp for air without coughing. His pedi. says he has reflux. Put him on zantac and sent him to a GI. ( Over the past 6 months it has done nothing, he also has been on prylocek) His GI says he doesn't have reflux. She sent him to a PULM. Who in turn sent him to an ENT. The ENT checked for inmature cords. They were fine. He wanted to do scope when he had his hernias(SP) fixed. Also his PULM. did a scope that day. The ENT came back fine , no signes of reflux. His PULM. didn't go that well. They found alot of swelling, inflamation,an abnormal amout of secreations, blood, and food in his lungs. He stayed in the hospital over night and the next afternoon he had a sweat test. They only got enough sweat off one arm. That number was 12. As the resident was telling us the results and we were asking our final questions, she got a page. When she came back from answering it we were told he had broncitis(SP) and they needed to do another sweat test (only one arm sweat enough). They doctors put him on agmentium. He was on that for about 1 week with very little change. Also in this time he was put in an inhaler. (Being treated like asmah(SP)) That following Monday I reveived a call thay he was DIRECTLY exposed to Whooping cough. His anti. was changed to Zysthromax, and cont. the inhaler. All coughing stopped! He has been off the anti. for 4 days and the cough and gasping is back!!!!!!!!!! We went to his Gi today,she still says it's not reflux. (HE WEIGHED IN AT 18.13pds AND 27IN)

In the next few weeks we will be doing another sweat test and a sleep study with a GI probe. (PULM. wants to try to get the coughing and gasp on tape)

When I was preg. with my first child I had the prenatel screening. That test came out neg. I believe both my kids also were tested at birth. (Massachusetts) I never heard anything so I asume it was neg.

I guess what I'm trying to say is what kind of questions should I be asking these doctors. And should we prepare our selves? Deep down I KNOW something is wrong with my son.

Katie
 

kpc

New member
I have a 7 month little boy. Since day 1 he would have coughing fits. During this time it would sound very flemmy and he would gasp for air. This would happen throughout the day. He also would gasp for air without coughing. His pedi. says he has reflux. Put him on zantac and sent him to a GI. ( Over the past 6 months it has done nothing, he also has been on prylocek) His GI says he doesn't have reflux. She sent him to a PULM. Who in turn sent him to an ENT. The ENT checked for inmature cords. They were fine. He wanted to do scope when he had his hernias(SP) fixed. Also his PULM. did a scope that day. The ENT came back fine , no signes of reflux. His PULM. didn't go that well. They found alot of swelling, inflamation,an abnormal amout of secreations, blood, and food in his lungs. He stayed in the hospital over night and the next afternoon he had a sweat test. They only got enough sweat off one arm. That number was 12. As the resident was telling us the results and we were asking our final questions, she got a page. When she came back from answering it we were told he had broncitis(SP) and they needed to do another sweat test (only one arm sweat enough). They doctors put him on agmentium. He was on that for about 1 week with very little change. Also in this time he was put in an inhaler. (Being treated like asmah(SP)) That following Monday I reveived a call thay he was DIRECTLY exposed to Whooping cough. His anti. was changed to Zysthromax, and cont. the inhaler. All coughing stopped! He has been off the anti. for 4 days and the cough and gasping is back!!!!!!!!!! We went to his Gi today,she still says it's not reflux. (HE WEIGHED IN AT 18.13pds AND 27IN)

In the next few weeks we will be doing another sweat test and a sleep study with a GI probe. (PULM. wants to try to get the coughing and gasp on tape)

When I was preg. with my first child I had the prenatel screening. That test came out neg. I believe both my kids also were tested at birth. (Massachusetts) I never heard anything so I asume it was neg.

I guess what I'm trying to say is what kind of questions should I be asking these doctors. And should we prepare our selves? Deep down I KNOW something is wrong with my son.

Katie
 

Keirasmom

New member
Hi Katie,
I am still really new to all this my daughter was diagnosed a few days after birth, but some of the standards are the salty taste when you kiss his forhead and really smelly greasy pooh. It will look like cooking oil is mixed in it. If he has those push for more CF testing. I found out that the sweat test wasn't working on my daughter because she was dehydrated from not getting enough out of her food. So, try for a genetics test.
I hope that helps.
Best,
Rebecca
 

Keirasmom

New member
Hi Katie,
I am still really new to all this my daughter was diagnosed a few days after birth, but some of the standards are the salty taste when you kiss his forhead and really smelly greasy pooh. It will look like cooking oil is mixed in it. If he has those push for more CF testing. I found out that the sweat test wasn't working on my daughter because she was dehydrated from not getting enough out of her food. So, try for a genetics test.
I hope that helps.
Best,
Rebecca
 

Keirasmom

New member
Hi Katie,
I am still really new to all this my daughter was diagnosed a few days after birth, but some of the standards are the salty taste when you kiss his forhead and really smelly greasy pooh. It will look like cooking oil is mixed in it. If he has those push for more CF testing. I found out that the sweat test wasn't working on my daughter because she was dehydrated from not getting enough out of her food. So, try for a genetics test.
I hope that helps.
Best,
Rebecca
 

thefrogprincess

New member
It is imperative that you ask for a genetic screening for CF that will be done at Ambry Genetics. Ambry is the only lab that will test for ALL known mutations of CF (there are over 1400). A sweat test can and often does give a false negative result. GOOF LUCK!
 

thefrogprincess

New member
It is imperative that you ask for a genetic screening for CF that will be done at Ambry Genetics. Ambry is the only lab that will test for ALL known mutations of CF (there are over 1400). A sweat test can and often does give a false negative result. GOOF LUCK!
 

thefrogprincess

New member
It is imperative that you ask for a genetic screening for CF that will be done at Ambry Genetics. Ambry is the only lab that will test for ALL known mutations of CF (there are over 1400). A sweat test can and often does give a false negative result. GOOF LUCK!
 
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