New here, get sweat test results on tues

[johnnysmomma]

My little guy is 20 months old, he has had problems with breathing since birth, he has been hospitalized with severe asthma three times now, had problems eating early on, I had to give him twice as much, and hes had yucky stools, its like he has diarrhea all the time, it makes his butt raw, the poor thing has hardly ever had a normal stool, hes on albuterol, advair, singular and zantac, I swear he drinks his weight every day, and he constantly eats, his pulmonary dr doesn't think its cf, but I instited on having him tested, also had different blood work drawn up, I just hope we find answers its so hard to see him grasping for breath, choking while trying to breathe...

 

[johnnysmomma]

My little guy is 20 months old, he has had problems with breathing since birth, he has been hospitalized with severe asthma three times now, had problems eating early on, I had to give him twice as much, and hes had yucky stools, its like he has diarrhea all the time, it makes his butt raw, the poor thing has hardly ever had a normal stool, hes on albuterol, advair, singular and zantac, I swear he drinks his weight every day, and he constantly eats, his pulmonary dr doesn't think its cf, but I instited on having him tested, also had different blood work drawn up, I just hope we find answers its so hard to see him grasping for breath, choking while trying to breathe...

 

[johnnysmomma]

My little guy is 20 months old, he has had problems with breathing since birth, he has been hospitalized with severe asthma three times now, had problems eating early on, I had to give him twice as much, and hes had yucky stools, its like he has diarrhea all the time, it makes his butt raw, the poor thing has hardly ever had a normal stool, hes on albuterol, advair, singular and zantac, I swear he drinks his weight every day, and he constantly eats, his pulmonary dr doesn't think its cf, but I instited on having him tested, also had different blood work drawn up, I just hope we find answers its so hard to see him grasping for breath, choking while trying to breathe...

 

[LouLou]

Good job momma and if it is considered negative (0-40) or borderline (40-60) request an extensive genetic sequencing test in order to completely rule it out.

And what was the pulmo's reasoning for thinking he does not have cf? Sounds quite classic to me :-(

An unofficial welcome to our club. Keep us posted on the diagnsosis progress.

 

[LouLou]

Good job momma and if it is considered negative (0-40) or borderline (40-60) request an extensive genetic sequencing test in order to completely rule it out.

And what was the pulmo's reasoning for thinking he does not have cf? Sounds quite classic to me :-(

An unofficial welcome to our club. Keep us posted on the diagnsosis progress.

 

[LouLou]

Good job momma and if it is considered negative (0-40) or borderline (40-60) request an extensive genetic sequencing test in order to completely rule it out.
<br />
<br />And what was the pulmo's reasoning for thinking he does not have cf? Sounds quite classic to me :-(
<br />
<br />An unofficial welcome to our club. Keep us posted on the diagnsosis progress.

 

[johnnysmomma]

Thank you, I will even if I have to change doctors,she told dad he's not sick enough, she said kids with cf require constant breathing treatments, and she feels its something else, he has constant ear infections, sinus issues,fevers with no cause, the only antibotic that works is getting a shot 3x, hes the happiest little guy with a huge smile, just not when hes sick <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[johnnysmomma]

Thank you, I will even if I have to change doctors,she told dad he's not sick enough, she said kids with cf require constant breathing treatments, and she feels its something else, he has constant ear infections, sinus issues,fevers with no cause, the only antibotic that works is getting a shot 3x, hes the happiest little guy with a huge smile, just not when hes sick <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[johnnysmomma]

Thank you, I will even if I have to change doctors,she told dad he's not sick enough, she said kids with cf require constant breathing treatments, and she feels its something else, he has constant ear infections, sinus issues,fevers with no cause, the only antibotic that works is getting a shot 3x, hes the happiest little guy with a huge smile, just not when hes sick <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[Mommafirst]

I get so angry to hear about how stupid some well educated pulmonary specialists can be about CF. It really makes me burn to think that someone with those credentials could think that a CF kid has to be deathly ill to have CF. Sooooooo many kids around this site are pretty darned healthy. Many of them don't get hospitalized until their teens. I'd expect a pediatrician to have that type of misunderstanding, but there really is no excuse for a pulmonologist.

Anyway,now that I'm done ranting.... I'm so sorry that you need to be here. I hope you get some answers. It does sound like CF is very likely. I hope you don't have to chase this dx around for too long and I hope you can get the care that will help johnny be more healthy!!!

 

[Mommafirst]

I get so angry to hear about how stupid some well educated pulmonary specialists can be about CF. It really makes me burn to think that someone with those credentials could think that a CF kid has to be deathly ill to have CF. Sooooooo many kids around this site are pretty darned healthy. Many of them don't get hospitalized until their teens. I'd expect a pediatrician to have that type of misunderstanding, but there really is no excuse for a pulmonologist.

Anyway,now that I'm done ranting.... I'm so sorry that you need to be here. I hope you get some answers. It does sound like CF is very likely. I hope you don't have to chase this dx around for too long and I hope you can get the care that will help johnny be more healthy!!!

 

[Mommafirst]

I get so angry to hear about how stupid some well educated pulmonary specialists can be about CF. It really makes me burn to think that someone with those credentials could think that a CF kid has to be deathly ill to have CF. Sooooooo many kids around this site are pretty darned healthy. Many of them don't get hospitalized until their teens. I'd expect a pediatrician to have that type of misunderstanding, but there really is no excuse for a pulmonologist.
<br />
<br />Anyway,now that I'm done ranting.... I'm so sorry that you need to be here. I hope you get some answers. It does sound like CF is very likely. I hope you don't have to chase this dx around for too long and I hope you can get the care that will help johnny be more healthy!!!

 

[gabster418]

Your story sounds very close to mine. We finally got him tested when in November and they called me the very next day with the diagnosis. My daughter who is 9 got tested the next day. She also has it. She never really was sick besides colds here and there. She was never hospitalized before. Hopefully you get answers soon. Prayers are with you.

 

[gabster418]

Your story sounds very close to mine. We finally got him tested when in November and they called me the very next day with the diagnosis. My daughter who is 9 got tested the next day. She also has it. She never really was sick besides colds here and there. She was never hospitalized before. Hopefully you get answers soon. Prayers are with you.

 

[gabster418]

Your story sounds very close to mine. We finally got him tested when in November and they called me the very next day with the diagnosis. My daughter who is 9 got tested the next day. She also has it. She never really was sick besides colds here and there. She was never hospitalized before. Hopefully you get answers soon. Prayers are with you.

 

[Ratatosk]

We found out DS had cf because of his digestive issues. The day after he was born he underwent surgery for a bowel obstruction caused by meconium illeus. A local doctor suspected CF and ordered genetic blood testings.

Without digestive enzymes his stools are very loose. When he was a baby and we were trying to get his enzymes adjusted he'd have frequent loose stools and we had to use a triple paste barrier cream to protect his bottom. He did have some sinus issues as well -- stuffy nose which never ran due to really thick sticky mucus.

 

[Ratatosk]

We found out DS had cf because of his digestive issues. The day after he was born he underwent surgery for a bowel obstruction caused by meconium illeus. A local doctor suspected CF and ordered genetic blood testings.

Without digestive enzymes his stools are very loose. When he was a baby and we were trying to get his enzymes adjusted he'd have frequent loose stools and we had to use a triple paste barrier cream to protect his bottom. He did have some sinus issues as well -- stuffy nose which never ran due to really thick sticky mucus.

 

[Ratatosk]

We found out DS had cf because of his digestive issues. The day after he was born he underwent surgery for a bowel obstruction caused by meconium illeus. A local doctor suspected CF and ordered genetic blood testings.
<br />
<br />Without digestive enzymes his stools are very loose. When he was a baby and we were trying to get his enzymes adjusted he'd have frequent loose stools and we had to use a triple paste barrier cream to protect his bottom. He did have some sinus issues as well -- stuffy nose which never ran due to really thick sticky mucus.

 

[johnnysmomma]

Thank you all for your responses, I'm just going a little crazy waiting on Tuesdays appt, I called the Dr office and tried to get the results over the phone today, the nurse says "I have the results right here, hang on a sec, Oh you have to come in and speak to the Dr I'm sorry". And dad doesn't want to talk about it or even accept the fact it might be, His digestion issues have always been a question, As a baby he didn't really mouth anything, And certain textures he refuses, he always had bad gas, and nasty bm, I knew something wasn't right, Its been a uphill battle to get it looked at,He has other issues going on as well, he pulls his hair out when hes stressed and eats it, he started this a couple months ago, he has moderate hearing loss and a Arterial Septail Defect, Im just glad to start the process and hopefully have someone listen to my concerns. So thank you all for listening... =)

 

[johnnysmomma]

Thank you all for your responses, I'm just going a little crazy waiting on Tuesdays appt, I called the Dr office and tried to get the results over the phone today, the nurse says "I have the results right here, hang on a sec, Oh you have to come in and speak to the Dr I'm sorry". And dad doesn't want to talk about it or even accept the fact it might be, His digestion issues have always been a question, As a baby he didn't really mouth anything, And certain textures he refuses, he always had bad gas, and nasty bm, I knew something wasn't right, Its been a uphill battle to get it looked at,He has other issues going on as well, he pulls his hair out when hes stressed and eats it, he started this a couple months ago, he has moderate hearing loss and a Arterial Septail Defect, Im just glad to start the process and hopefully have someone listen to my concerns. So thank you all for listening... =)