Liam

[Liamsmommy]

My son was born on Aug. 31 06 and since then has been in and out of hospital with Bronchiolitis and "bronculaar pneumonia". He's been sick since the day he was born. At 5 days old the "cold" started by 7 weeks he was in hospital with it. He was discharged still with "bronchiolitis" but was told he was on the mend and would be fine. He never did get better he got worse and worse. On Dec. 12 I has to take him back to the hospital where to discharged him and told me that he was asthmatic and sent me home with puffers. 3 days later we were back in the hospital and this time they sent us home with the nebuliser. then on the 21st he was back in the hospital this time they kept him and decided that it was time to do more testing (after of course I put it in there minds). His sweat test came back "normal 39" and his stool came back positive for "some fat" (mind u the child was not eating much at all because he couldn't breath so I would like to know how much fat would have been in his stool if he had been eating normal). They also did a "milk scan" to check for aspiration witch of course was neg. He's in the 50 percentile for weight so they are not concerned. That being said my other 4 children were all in the 95 percentile so I don't know. They are also now He's being tested for Autoimmune disorders. He sweets like a pig and his stool is pale green and is either flaky or very loose and the stink! my goodness. His hands and feet are always like ice and when hes sleeping his O2 sats drope to the high 80's so you have to wake him a bit to get his sats back to the low 90s This poor baby is so sick and I don't know what to do. When they were doing his neb treatments in the hospital all the nurses commented on how good he sound before the treatments and then he would sound wheezy and crackly after the treatments. I don't get it if he was Asthmatic then wouldn't he be clear after his treatment??? Im thinking that my next step is to demand genetic testing or is the 39 sweet test enough to say for certian that he doesnt have it

thank you
Shawna
PS sorry this is so long

 

[Liamsmommy]

My son was born on Aug. 31 06 and since then has been in and out of hospital with Bronchiolitis and "bronculaar pneumonia". He's been sick since the day he was born. At 5 days old the "cold" started by 7 weeks he was in hospital with it. He was discharged still with "bronchiolitis" but was told he was on the mend and would be fine. He never did get better he got worse and worse. On Dec. 12 I has to take him back to the hospital where to discharged him and told me that he was asthmatic and sent me home with puffers. 3 days later we were back in the hospital and this time they sent us home with the nebuliser. then on the 21st he was back in the hospital this time they kept him and decided that it was time to do more testing (after of course I put it in there minds). His sweat test came back "normal 39" and his stool came back positive for "some fat" (mind u the child was not eating much at all because he couldn't breath so I would like to know how much fat would have been in his stool if he had been eating normal). They also did a "milk scan" to check for aspiration witch of course was neg. He's in the 50 percentile for weight so they are not concerned. That being said my other 4 children were all in the 95 percentile so I don't know. They are also now He's being tested for Autoimmune disorders. He sweets like a pig and his stool is pale green and is either flaky or very loose and the stink! my goodness. His hands and feet are always like ice and when hes sleeping his O2 sats drope to the high 80's so you have to wake him a bit to get his sats back to the low 90s This poor baby is so sick and I don't know what to do. When they were doing his neb treatments in the hospital all the nurses commented on how good he sound before the treatments and then he would sound wheezy and crackly after the treatments. I don't get it if he was Asthmatic then wouldn't he be clear after his treatment??? Im thinking that my next step is to demand genetic testing or is the 39 sweet test enough to say for certian that he doesnt have it

thank you
Shawna
PS sorry this is so long

 

[Liamsmommy]

My son was born on Aug. 31 06 and since then has been in and out of hospital with Bronchiolitis and "bronculaar pneumonia". He's been sick since the day he was born. At 5 days old the "cold" started by 7 weeks he was in hospital with it. He was discharged still with "bronchiolitis" but was told he was on the mend and would be fine. He never did get better he got worse and worse. On Dec. 12 I has to take him back to the hospital where to discharged him and told me that he was asthmatic and sent me home with puffers. 3 days later we were back in the hospital and this time they sent us home with the nebuliser. then on the 21st he was back in the hospital this time they kept him and decided that it was time to do more testing (after of course I put it in there minds). His sweat test came back "normal 39" and his stool came back positive for "some fat" (mind u the child was not eating much at all because he couldn't breath so I would like to know how much fat would have been in his stool if he had been eating normal). They also did a "milk scan" to check for aspiration witch of course was neg. He's in the 50 percentile for weight so they are not concerned. That being said my other 4 children were all in the 95 percentile so I don't know. They are also now He's being tested for Autoimmune disorders. He sweets like a pig and his stool is pale green and is either flaky or very loose and the stink! my goodness. His hands and feet are always like ice and when hes sleeping his O2 sats drope to the high 80's so you have to wake him a bit to get his sats back to the low 90s This poor baby is so sick and I don't know what to do. When they were doing his neb treatments in the hospital all the nurses commented on how good he sound before the treatments and then he would sound wheezy and crackly after the treatments. I don't get it if he was Asthmatic then wouldn't he be clear after his treatment??? Im thinking that my next step is to demand genetic testing or is the 39 sweet test enough to say for certian that he doesnt have it

thank you
Shawna
PS sorry this is so long

 

[JazzysMom]

DEMAND the genetic testing. IF he was purely an asmthatic then the nebs would improve him. It sounds like they are loosening up whats down there like they should if he has CF. Poor thing.....even if its not CF something is not right. Advocate for your little one....Good Luck and keep us updated!

 

[JazzysMom]

DEMAND the genetic testing. IF he was purely an asmthatic then the nebs would improve him. It sounds like they are loosening up whats down there like they should if he has CF. Poor thing.....even if its not CF something is not right. Advocate for your little one....Good Luck and keep us updated!

 

[JazzysMom]

DEMAND the genetic testing. IF he was purely an asmthatic then the nebs would improve him. It sounds like they are loosening up whats down there like they should if he has CF. Poor thing.....even if its not CF something is not right. Advocate for your little one....Good Luck and keep us updated!

 

[izemmom]

I'm with Melissa - get the testing. It can not hurt. I wanted to also let you know that you'll be getting a special "mom's prayer" from me tonight. You certianly have the lion's share of challenges to deal with. Keep us posted!

 

[izemmom]

I'm with Melissa - get the testing. It can not hurt. I wanted to also let you know that you'll be getting a special "mom's prayer" from me tonight. You certianly have the lion's share of challenges to deal with. Keep us posted!

 

[izemmom]

I'm with Melissa - get the testing. It can not hurt. I wanted to also let you know that you'll be getting a special "mom's prayer" from me tonight. You certianly have the lion's share of challenges to deal with. Keep us posted!

 

[amber682]

I'm no doctor, but it sure sounds like it could be CF to me. Demand genetic testing, sweat tests can give you a false negative but not a false positive. Follow that mommy instinct! I'm sorry you have so much to deal with, and I hope your children are all doing well. Feel free to ask any questions you have, and keep us posted!

 

[amber682]

I'm no doctor, but it sure sounds like it could be CF to me. Demand genetic testing, sweat tests can give you a false negative but not a false positive. Follow that mommy instinct! I'm sorry you have so much to deal with, and I hope your children are all doing well. Feel free to ask any questions you have, and keep us posted!

 

[amber682]

I'm no doctor, but it sure sounds like it could be CF to me. Demand genetic testing, sweat tests can give you a false negative but not a false positive. Follow that mommy instinct! I'm sorry you have so much to deal with, and I hope your children are all doing well. Feel free to ask any questions you have, and keep us posted!

 

[Jem]

My sweat test results was 39 and I HAVE CF! My brother too! Make sure when you demand the genetic test they test for as many genes as possible-- such as Ambry where the test for over 1400 genes. Check out the homepage on this web site to see the link to Ambry genetics to get the imformation on their cf testing. Good luck to you and you family. I will keep you in prayer. Let us know how things are going when you can.

 

[Jem]

My sweat test results was 39 and I HAVE CF! My brother too! Make sure when you demand the genetic test they test for as many genes as possible-- such as Ambry where the test for over 1400 genes. Check out the homepage on this web site to see the link to Ambry genetics to get the imformation on their cf testing. Good luck to you and you family. I will keep you in prayer. Let us know how things are going when you can.

 

[Jem]

My sweat test results was 39 and I HAVE CF! My brother too! Make sure when you demand the genetic test they test for as many genes as possible-- such as Ambry where the test for over 1400 genes. Check out the homepage on this web site to see the link to Ambry genetics to get the imformation on their cf testing. Good luck to you and you family. I will keep you in prayer. Let us know how things are going when you can.

 

[Augustmom0003]

Yes, please demand the sweat test. If it is...the meds he will get will make him feel so much better!! Your situation sounds so much like mine when my son was born. Almost EXACTLY! The only difference is his sweat test was 80's and 90's. My daughter's was 39 (a high normal) and I demanded a DNA test just incase (b/c sweat tests have been wrong). She is a carrier.

So, yes, if I was in your situation...I'd demand one. One of two things will happen. It will be positive and he'll get the meds he needs (and if he's anything like my son, will be a brand new baby!) or it will be negative, and, at least in regards to CF, you can put your mind at ease. MAKE SURE (as I'm sure you've been told already) that it's an accredited CF center! Keep us posted if you can!

Prayers and thoughts are with you!

 

[Augustmom0003]

Yes, please demand the sweat test. If it is...the meds he will get will make him feel so much better!! Your situation sounds so much like mine when my son was born. Almost EXACTLY! The only difference is his sweat test was 80's and 90's. My daughter's was 39 (a high normal) and I demanded a DNA test just incase (b/c sweat tests have been wrong). She is a carrier.

So, yes, if I was in your situation...I'd demand one. One of two things will happen. It will be positive and he'll get the meds he needs (and if he's anything like my son, will be a brand new baby!) or it will be negative, and, at least in regards to CF, you can put your mind at ease. MAKE SURE (as I'm sure you've been told already) that it's an accredited CF center! Keep us posted if you can!

Prayers and thoughts are with you!

 

[Augustmom0003]

Yes, please demand the sweat test. If it is...the meds he will get will make him feel so much better!! Your situation sounds so much like mine when my son was born. Almost EXACTLY! The only difference is his sweat test was 80's and 90's. My daughter's was 39 (a high normal) and I demanded a DNA test just incase (b/c sweat tests have been wrong). She is a carrier.

So, yes, if I was in your situation...I'd demand one. One of two things will happen. It will be positive and he'll get the meds he needs (and if he's anything like my son, will be a brand new baby!) or it will be negative, and, at least in regards to CF, you can put your mind at ease. MAKE SURE (as I'm sure you've been told already) that it's an accredited CF center! Keep us posted if you can!

Prayers and thoughts are with you!

 

[Liamsmommy]

Thank you all for you input. Im just sick of Doctors saying it normal and that the end of that. I wasnt sure if a 39 was a good normal or if it was still high enough to look at the genics of my son. Im just getting tired of my son being so sick! I didnt want to start demanding test where I was off base but now i see that a 39 isnt that clear cut.
We live in a very small town and the closest childrens hospital is 2.5 hours but it looks like the best thing for him could be going to Sick kids hospital.
Thank you all for the information and I will keep everyone posted as to what we find out.
Shawna

 

[Liamsmommy]

Thank you all for you input. Im just sick of Doctors saying it normal and that the end of that. I wasnt sure if a 39 was a good normal or if it was still high enough to look at the genics of my son. Im just getting tired of my son being so sick! I didnt want to start demanding test where I was off base but now i see that a 39 isnt that clear cut.
We live in a very small town and the closest childrens hospital is 2.5 hours but it looks like the best thing for him could be going to Sick kids hospital.
Thank you all for the information and I will keep everyone posted as to what we find out.
Shawna