Sweat test

[Alyssa]

You know, those sweat test results are far apart, but they are both positive ! Plus you both are carriers.... seems like someone better get on the stick and figure out for sure if he has CF or not.

Will they be doing the sweat test again? You should be demanding they do genetic testing. If they know you and your husband's genes it should be a pretty cheap test -- you may not need the full testing. You can double check with the Ambry guy on this website - he could tell you for sure.

Get pushy if need be -- find out where the closest CFF center is and start talking to them -- they will recognize the need to figure this out right away if you tell them what you have posted here.

Best wishes and please keep us posted.

 

[Ratatosk]

Have they done Xrays? Look under the adult section where I posted how DS was diagnosed. They thought DS had stooled in the womb when he was born, turns out he had meconium illeus, a bowel obstruction and had to be lifeflighted to another hospital for emergencyh surgery! Also, even when DS was just drinking one or two onces he got at LEAST half a capsule of enzymes. And despite the difference in sweat test numbers -- those are still very high results!

Another question... Has he pooped yet?! We realized when DS started hurling green stuff --- wasn't bile, wasn't amniotic fluid it was green POO! That he hadn't pooped yet!!!

 

[Ratatosk]

Have they done Xrays? Look under the adult section where I posted how DS was diagnosed. They thought DS had stooled in the womb when he was born, turns out he had meconium illeus, a bowel obstruction and had to be lifeflighted to another hospital for emergencyh surgery! Also, even when DS was just drinking one or two onces he got at LEAST half a capsule of enzymes. And despite the difference in sweat test numbers -- those are still very high results!

Another question... Has he pooped yet?! We realized when DS started hurling green stuff --- wasn't bile, wasn't amniotic fluid it was green POO! That he hadn't pooped yet!!!

 

[Ratatosk]

Have they done Xrays? Look under the adult section where I posted how DS was diagnosed. They thought DS had stooled in the womb when he was born, turns out he had meconium illeus, a bowel obstruction and had to be lifeflighted to another hospital for emergencyh surgery! Also, even when DS was just drinking one or two onces he got at LEAST half a capsule of enzymes. And despite the difference in sweat test numbers -- those are still very high results!

Another question... Has he pooped yet?! We realized when DS started hurling green stuff --- wasn't bile, wasn't amniotic fluid it was green POO! That he hadn't pooped yet!!!

 

[sdelorenzo]

Congratulations on the birth of Parker! My son was born with meconium illeus. It does sound like your son still has a blockage. The fact that he isn't eating well and spitting most of it up is an indication of this. My son passed meconium each day, too. But was still blocked. They tried a gastrographin enema each day. He finally cleared a large meconium plug on day 10 a few hours before surgery was scheduled. We had to transfer him to the local children's hospital where they have a cf center. The radiologists at the hospital where I gave birth were not familiar with giving enemas for MI. They tried for 5 days but were not successful. It took an experienced radiologist at the children's hospital to move out the blockage. Now 10 days is really long time to wait. My son's surgeon had planned long before my son was born to give him 10 days of enemas, along with IV feeds to clear his bowels before surgery would be performed.

It does sound like the information you are getting from the doctors is a bit off. Are you at a high level (3) NICU? Is there here a cf center close by? You can find out on cff.org. Are you speaking with a cf doctor from a cf clinic? Is a pediatric GI doctor who works with the center or at least quite a few cf patients advising you? Is there a surgeon who is familiar with meconium illeus working with your son? If I was you, if you are not at the best children's hospital in the area with the cf center, I would have him transfered. Also, ask around and find the best surgeon at the hospital. It doesn't sound like you are getting very good advice.

It most definitely sounds like your son has cf since he has two positive sweat tests. It doesn't matter that they are not close. It would be good to get genetic testing done, but your son needs to be treated for cf.

I would strongly suggest that you pump even though he isn't eating well. Breast milk is a very good laxative and can be helpful to him for many reasons (easy to digest) when he does begin to eat well. Feel free to e-mail me is you have any other questions. sdelorenzo@sbcglobal.net
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[sdelorenzo]

Congratulations on the birth of Parker! My son was born with meconium illeus. It does sound like your son still has a blockage. The fact that he isn't eating well and spitting most of it up is an indication of this. My son passed meconium each day, too. But was still blocked. They tried a gastrographin enema each day. He finally cleared a large meconium plug on day 10 a few hours before surgery was scheduled. We had to transfer him to the local children's hospital where they have a cf center. The radiologists at the hospital where I gave birth were not familiar with giving enemas for MI. They tried for 5 days but were not successful. It took an experienced radiologist at the children's hospital to move out the blockage. Now 10 days is really long time to wait. My son's surgeon had planned long before my son was born to give him 10 days of enemas, along with IV feeds to clear his bowels before surgery would be performed.

It does sound like the information you are getting from the doctors is a bit off. Are you at a high level (3) NICU? Is there here a cf center close by? You can find out on cff.org. Are you speaking with a cf doctor from a cf clinic? Is a pediatric GI doctor who works with the center or at least quite a few cf patients advising you? Is there a surgeon who is familiar with meconium illeus working with your son? If I was you, if you are not at the best children's hospital in the area with the cf center, I would have him transfered. Also, ask around and find the best surgeon at the hospital. It doesn't sound like you are getting very good advice.

It most definitely sounds like your son has cf since he has two positive sweat tests. It doesn't matter that they are not close. It would be good to get genetic testing done, but your son needs to be treated for cf.

I would strongly suggest that you pump even though he isn't eating well. Breast milk is a very good laxative and can be helpful to him for many reasons (easy to digest) when he does begin to eat well. Feel free to e-mail me is you have any other questions. sdelorenzo@sbcglobal.net
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[sdelorenzo]

Congratulations on the birth of Parker! My son was born with meconium illeus. It does sound like your son still has a blockage. The fact that he isn't eating well and spitting most of it up is an indication of this. My son passed meconium each day, too. But was still blocked. They tried a gastrographin enema each day. He finally cleared a large meconium plug on day 10 a few hours before surgery was scheduled. We had to transfer him to the local children's hospital where they have a cf center. The radiologists at the hospital where I gave birth were not familiar with giving enemas for MI. They tried for 5 days but were not successful. It took an experienced radiologist at the children's hospital to move out the blockage. Now 10 days is really long time to wait. My son's surgeon had planned long before my son was born to give him 10 days of enemas, along with IV feeds to clear his bowels before surgery would be performed.

It does sound like the information you are getting from the doctors is a bit off. Are you at a high level (3) NICU? Is there here a cf center close by? You can find out on cff.org. Are you speaking with a cf doctor from a cf clinic? Is a pediatric GI doctor who works with the center or at least quite a few cf patients advising you? Is there a surgeon who is familiar with meconium illeus working with your son? If I was you, if you are not at the best children's hospital in the area with the cf center, I would have him transfered. Also, ask around and find the best surgeon at the hospital. It doesn't sound like you are getting very good advice.

It most definitely sounds like your son has cf since he has two positive sweat tests. It doesn't matter that they are not close. It would be good to get genetic testing done, but your son needs to be treated for cf.

I would strongly suggest that you pump even though he isn't eating well. Breast milk is a very good laxative and can be helpful to him for many reasons (easy to digest) when he does begin to eat well. Feel free to e-mail me is you have any other questions. sdelorenzo@sbcglobal.net
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[sdavis227]

Thank you everyone for your responses. I'll try to answer some questions:
They've been doing x-rays about twice a day and all seems to be staying the same and the pediatric surgeon is saying that they are not worried by it. The NICU is a level III, and there is a CF center in the hospital. They are doing another sweat test tomorrow, and they did say that they would treat it as CF until it was proven that it wasn't CF. They are taking him now to do an x-ray on his esophogus (sp?) and run a contrast down him to see if there is anything that they can see that way. He ate a little bit last night (swallowed once or twice) and kept it down. I fed him while he was upright and then made sure he went on his belly. Hopefully we can get some more answers today. He is looking a lot better, and pooped for the fourth time earlier today. Sharon - was it just through x-rays that they saw he still had the plug? He has been distended a little since birth, but they keep thinking it's "gas". I think I will ask the doctor/nurse the next time we go up, if I can speak with someone from the CF center.

 

[sdavis227]

Thank you everyone for your responses. I'll try to answer some questions:
They've been doing x-rays about twice a day and all seems to be staying the same and the pediatric surgeon is saying that they are not worried by it. The NICU is a level III, and there is a CF center in the hospital. They are doing another sweat test tomorrow, and they did say that they would treat it as CF until it was proven that it wasn't CF. They are taking him now to do an x-ray on his esophogus (sp?) and run a contrast down him to see if there is anything that they can see that way. He ate a little bit last night (swallowed once or twice) and kept it down. I fed him while he was upright and then made sure he went on his belly. Hopefully we can get some more answers today. He is looking a lot better, and pooped for the fourth time earlier today. Sharon - was it just through x-rays that they saw he still had the plug? He has been distended a little since birth, but they keep thinking it's "gas". I think I will ask the doctor/nurse the next time we go up, if I can speak with someone from the CF center.

 

[sdavis227]

Thank you everyone for your responses. I'll try to answer some questions:
They've been doing x-rays about twice a day and all seems to be staying the same and the pediatric surgeon is saying that they are not worried by it. The NICU is a level III, and there is a CF center in the hospital. They are doing another sweat test tomorrow, and they did say that they would treat it as CF until it was proven that it wasn't CF. They are taking him now to do an x-ray on his esophogus (sp?) and run a contrast down him to see if there is anything that they can see that way. He ate a little bit last night (swallowed once or twice) and kept it down. I fed him while he was upright and then made sure he went on his belly. Hopefully we can get some more answers today. He is looking a lot better, and pooped for the fourth time earlier today. Sharon - was it just through x-rays that they saw he still had the plug? He has been distended a little since birth, but they keep thinking it's "gas". I think I will ask the doctor/nurse the next time we go up, if I can speak with someone from the CF center.

 

[sdelorenzo]

Shannon,
It sounds like your son is where he should be. Four bowel movements is a good sign. I know my son's x-rays told the doctors a lot. They also did some test where they used barium or another contrast to see if it went through the tummy and through all of the intestines. It sounds like what your described. My son's tummy was distended as well. I know from hearing other parents talk about MI that is one of the signs. You are doing a great job and learning a lot quickly it sounds like. Your son needs you to be informed and be his advocate!
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[sdelorenzo]

Shannon,
It sounds like your son is where he should be. Four bowel movements is a good sign. I know my son's x-rays told the doctors a lot. They also did some test where they used barium or another contrast to see if it went through the tummy and through all of the intestines. It sounds like what your described. My son's tummy was distended as well. I know from hearing other parents talk about MI that is one of the signs. You are doing a great job and learning a lot quickly it sounds like. Your son needs you to be informed and be his advocate!
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[sdelorenzo]

Shannon,
It sounds like your son is where he should be. Four bowel movements is a good sign. I know my son's x-rays told the doctors a lot. They also did some test where they used barium or another contrast to see if it went through the tummy and through all of the intestines. It sounds like what your described. My son's tummy was distended as well. I know from hearing other parents talk about MI that is one of the signs. You are doing a great job and learning a lot quickly it sounds like. Your son needs you to be informed and be his advocate!
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[Ratatosk]

With DS they did xrays with contrast -- both ends at the local hospital. Then a few weeks after his surgery, he started vomiting, so they did the contrast thru an ng tube and we watched it go down on the computer screen -- pretty much lost track once in hit the small intestines, but the radiologist was able to analyze it all and things were fine at that point.

My concerns when I read your post, was that they had a "wait and see" attitude, but sounds like they're monitoring things and he is stooling...

 

[Ratatosk]

With DS they did xrays with contrast -- both ends at the local hospital. Then a few weeks after his surgery, he started vomiting, so they did the contrast thru an ng tube and we watched it go down on the computer screen -- pretty much lost track once in hit the small intestines, but the radiologist was able to analyze it all and things were fine at that point.

My concerns when I read your post, was that they had a "wait and see" attitude, but sounds like they're monitoring things and he is stooling...

 

[Ratatosk]

With DS they did xrays with contrast -- both ends at the local hospital. Then a few weeks after his surgery, he started vomiting, so they did the contrast thru an ng tube and we watched it go down on the computer screen -- pretty much lost track once in hit the small intestines, but the radiologist was able to analyze it all and things were fine at that point.

My concerns when I read your post, was that they had a "wait and see" attitude, but sounds like they're monitoring things and he is stooling...

 

[sdavis227]

I wanted to thank everyone for their responses and say that we did get the diagnosis of CF yesterday. 106 and 99 were sweat test numbers on Thursday. We should be following up today with some of the CF doctors here at the hospital. Parker is doing much better and starting to eat. Hopefully we will be able to take the IV out soon and get going home. Thank you everyone for your support and I'm sure I will be speaking with you guys soon.
Shannon
Mom to Chayse, 2yrs wo/cf and Parker, 4 days old w/cf

 

[sdavis227]

I wanted to thank everyone for their responses and say that we did get the diagnosis of CF yesterday. 106 and 99 were sweat test numbers on Thursday. We should be following up today with some of the CF doctors here at the hospital. Parker is doing much better and starting to eat. Hopefully we will be able to take the IV out soon and get going home. Thank you everyone for your support and I'm sure I will be speaking with you guys soon.
Shannon
Mom to Chayse, 2yrs wo/cf and Parker, 4 days old w/cf

 

[sdavis227]

I wanted to thank everyone for their responses and say that we did get the diagnosis of CF yesterday. 106 and 99 were sweat test numbers on Thursday. We should be following up today with some of the CF doctors here at the hospital. Parker is doing much better and starting to eat. Hopefully we will be able to take the IV out soon and get going home. Thank you everyone for your support and I'm sure I will be speaking with you guys soon.
Shannon
Mom to Chayse, 2yrs wo/cf and Parker, 4 days old w/cf

 

[Mommafirst]

I am sorry for your confirmation, but glad you have some answers. I always hope new posters will be spared this world, but sadly so many of us are not. My heart goes to you as you cope with all this. Please come back and post some pictures of Parker!!! Big hugs and congrats!!!