I hope you can help......

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 8.13pds 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 8.13pds 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 8.13pds 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
 

JRPandTJP

New member
What does pds stand for...pounds?? A 7 months old at 8 lbs would be of great concern, right?

What are his stools like? Have they done a fecal fat test? Can you be seen by a CF clinic (they often do things a bit quicker and look at things differently if they suspect CF)?

In addition for checking for CF, have they done a RAST to rule out milk/food allergy? What is his diet? Is there mold allergy or other environmental allergies in the home possibly causing? Allergies can cause a lot of problems and mask as other things.

Are they checking his blood levels, protein and vitamin levels as well?

I'm so sorry you are going through all of this and for so long. I hope you get some answers soon. We of course hope it is not CF.

Jody
 

JRPandTJP

New member
What does pds stand for...pounds?? A 7 months old at 8 lbs would be of great concern, right?

What are his stools like? Have they done a fecal fat test? Can you be seen by a CF clinic (they often do things a bit quicker and look at things differently if they suspect CF)?

In addition for checking for CF, have they done a RAST to rule out milk/food allergy? What is his diet? Is there mold allergy or other environmental allergies in the home possibly causing? Allergies can cause a lot of problems and mask as other things.

Are they checking his blood levels, protein and vitamin levels as well?

I'm so sorry you are going through all of this and for so long. I hope you get some answers soon. We of course hope it is not CF.

Jody
 

JRPandTJP

New member
What does pds stand for...pounds?? A 7 months old at 8 lbs would be of great concern, right?

What are his stools like? Have they done a fecal fat test? Can you be seen by a CF clinic (they often do things a bit quicker and look at things differently if they suspect CF)?

In addition for checking for CF, have they done a RAST to rule out milk/food allergy? What is his diet? Is there mold allergy or other environmental allergies in the home possibly causing? Allergies can cause a lot of problems and mask as other things.

Are they checking his blood levels, protein and vitamin levels as well?

I'm so sorry you are going through all of this and for so long. I hope you get some answers soon. We of course hope it is not CF.

Jody
 

kpc

New member
He acts like he constapied but when they felt his belly they said he wasnt. His stools are 9 out of 10 times very dark, sometimes hard. Never any blood. We go to Childrens in Boston. No RAST test!?!?! He eats stage 2 fruit, vegi, oatmeal and similac advance.
 

kpc

New member
He acts like he constapied but when they felt his belly they said he wasnt. His stools are 9 out of 10 times very dark, sometimes hard. Never any blood. We go to Childrens in Boston. No RAST test!?!?! He eats stage 2 fruit, vegi, oatmeal and similac advance.
 

kpc

New member
He acts like he constapied but when they felt his belly they said he wasnt. His stools are 9 out of 10 times very dark, sometimes hard. Never any blood. We go to Childrens in Boston. No RAST test!?!?! He eats stage 2 fruit, vegi, oatmeal and similac advance.
 
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