New to site...waiting for answers

K

Karenmichelle

Guest
I am not sure where to start. We are currently waiting for the Ambry CF Amplified results on our 4yr old. Tyler has always had chronic respiratory and sinus infections. He has had bronchiolitis and RSV several times, bronchial thickening shows on xrays, several nasal surgeries and been diagnosed with asthma. They recently did a bronch on him and he had "pus and mucous from his sinuses into lungs". The doctors have said he "looks like" a CF child on paper and from his bronch (he is growing a high number of bacteria but no fungus). His sweat test was normal. He has always had a cough and the last year has progressed to a productive cough. Symptoms/ ER visits started at 7 months. Has been progressively worse the past 2 years. We also discovered that he did not receive immunity to his Prevnar vaccine so they boosted him a year ago,and we recently found out he did not have immunity again. So, they gave him another booster. We have been to the hospital for severe abdominal pain...thinking it was appendicitis..and he just had severe bowl and stomach distention. He is very gassy and has not gained weight in about 2 yrs. He maintains at 31-32lbs. Waiting to see GI for FTT workup. I do not know what to think. He tires easily and he looks pekid all the time. Sweet as can be and smiles, though <img src="i/expressions/face-icon-small-smile.gif" border="0"> I just do not know what to think. I just want a diagnosis and peace of mind. If the genetic test comes back negative, what then?!?! I am somewhat prepared for it to be positive, but then I don't let my brain go there. I am exhausted from thinking about it. We pray a lot and I know know matter what it is in the Lord's hands. It probably doesn't help that I am a nurse and trying to figure it all out <img src="i/expressions/face-icon-small-smile.gif" border="0"> Thank you for letting me vent. Sorry so long. Any words of wisdom/opinions appreciated.
 
K

Karenmichelle

Guest
I am not sure where to start. We are currently waiting for the Ambry CF Amplified results on our 4yr old. Tyler has always had chronic respiratory and sinus infections. He has had bronchiolitis and RSV several times, bronchial thickening shows on xrays, several nasal surgeries and been diagnosed with asthma. They recently did a bronch on him and he had "pus and mucous from his sinuses into lungs". The doctors have said he "looks like" a CF child on paper and from his bronch (he is growing a high number of bacteria but no fungus). His sweat test was normal. He has always had a cough and the last year has progressed to a productive cough. Symptoms/ ER visits started at 7 months. Has been progressively worse the past 2 years. We also discovered that he did not receive immunity to his Prevnar vaccine so they boosted him a year ago,and we recently found out he did not have immunity again. So, they gave him another booster. We have been to the hospital for severe abdominal pain...thinking it was appendicitis..and he just had severe bowl and stomach distention. He is very gassy and has not gained weight in about 2 yrs. He maintains at 31-32lbs. Waiting to see GI for FTT workup. I do not know what to think. He tires easily and he looks pekid all the time. Sweet as can be and smiles, though <img src="i/expressions/face-icon-small-smile.gif" border="0"> I just do not know what to think. I just want a diagnosis and peace of mind. If the genetic test comes back negative, what then?!?! I am somewhat prepared for it to be positive, but then I don't let my brain go there. I am exhausted from thinking about it. We pray a lot and I know know matter what it is in the Lord's hands. It probably doesn't help that I am a nurse and trying to figure it all out <img src="i/expressions/face-icon-small-smile.gif" border="0"> Thank you for letting me vent. Sorry so long. Any words of wisdom/opinions appreciated.
 
K

Karenmichelle

Guest
I am not sure where to start. We are currently waiting for the Ambry CF Amplified results on our 4yr old. Tyler has always had chronic respiratory and sinus infections. He has had bronchiolitis and RSV several times, bronchial thickening shows on xrays, several nasal surgeries and been diagnosed with asthma. They recently did a bronch on him and he had "pus and mucous from his sinuses into lungs". The doctors have said he "looks like" a CF child on paper and from his bronch (he is growing a high number of bacteria but no fungus). His sweat test was normal. He has always had a cough and the last year has progressed to a productive cough. Symptoms/ ER visits started at 7 months. Has been progressively worse the past 2 years. We also discovered that he did not receive immunity to his Prevnar vaccine so they boosted him a year ago,and we recently found out he did not have immunity again. So, they gave him another booster. We have been to the hospital for severe abdominal pain...thinking it was appendicitis..and he just had severe bowl and stomach distention. He is very gassy and has not gained weight in about 2 yrs. He maintains at 31-32lbs. Waiting to see GI for FTT workup. I do not know what to think. He tires easily and he looks pekid all the time. Sweet as can be and smiles, though <img src="i/expressions/face-icon-small-smile.gif" border="0"> I just do not know what to think. I just want a diagnosis and peace of mind. If the genetic test comes back negative, what then?!?! I am somewhat prepared for it to be positive, but then I don't let my brain go there. I am exhausted from thinking about it. We pray a lot and I know know matter what it is in the Lord's hands. It probably doesn't help that I am a nurse and trying to figure it all out <img src="i/expressions/face-icon-small-smile.gif" border="0"> Thank you for letting me vent. Sorry so long. Any words of wisdom/opinions appreciated.
 
R

Ratatosk

Administrator
Staff member
Hopefully if the test results come back negative, your doctors are proactive enough to treat the symptoms and help you to look for answers elsewhere.

You indicated you're waiting to see GI... How do his stools look? Have they done a fecal fat test?

Have they cultured the mucus and determined the correct antibiotic to treat whatever bugs he has growing? With his sinus issues, are you able to do sinus rinses? DS starte doing sinus rinses around age 4.
 
R

Ratatosk

Administrator
Staff member
Hopefully if the test results come back negative, your doctors are proactive enough to treat the symptoms and help you to look for answers elsewhere.

You indicated you're waiting to see GI... How do his stools look? Have they done a fecal fat test?

Have they cultured the mucus and determined the correct antibiotic to treat whatever bugs he has growing? With his sinus issues, are you able to do sinus rinses? DS starte doing sinus rinses around age 4.
 
R

Ratatosk

Administrator
Staff member
Hopefully if the test results come back negative, your doctors are proactive enough to treat the symptoms and help you to look for answers elsewhere.
<br />
<br />You indicated you're waiting to see GI... How do his stools look? Have they done a fecal fat test?
<br />
<br />Have they cultured the mucus and determined the correct antibiotic to treat whatever bugs he has growing? With his sinus issues, are you able to do sinus rinses? DS starte doing sinus rinses around age 4.
 
K

KKN

New member
I am right there with you Karenmichelle. We are also waiting for Ambry test results. It is so hard to not play "what if" as we wait for test results. Sorry your son is so sick! I wish I had some words of wisdom. All I can say is hang in there and know that this is a tremendous group here. Did your son have any Sweat tests conducted?

KKN (three weeks into the wait for test results)
 
K

KKN

New member
I am right there with you Karenmichelle. We are also waiting for Ambry test results. It is so hard to not play "what if" as we wait for test results. Sorry your son is so sick! I wish I had some words of wisdom. All I can say is hang in there and know that this is a tremendous group here. Did your son have any Sweat tests conducted?

KKN (three weeks into the wait for test results)
 
K

KKN

New member
I am right there with you Karenmichelle. We are also waiting for Ambry test results. It is so hard to not play "what if" as we wait for test results. Sorry your son is so sick! I wish I had some words of wisdom. All I can say is hang in there and know that this is a tremendous group here. Did your son have any Sweat tests conducted?
<br />
<br />KKN (three weeks into the wait for test results)
 
K

Karenmichelle

Guest
He is on FloVent daily, Xopenex and Flonase. We have done nasal saline rinses, and that does not go well all the time <img src="i/expressions/face-icon-small-smile.gif" border="0"> We have not done any stool testing at this time, but has been discussed to do. His stools are weird to me. He goes several times a day, which is amazing to me with the amount/lack of food eaten. He eats, but then stops because his "tummy hurts and feels full". They do have a lot of mucous in them. But they don't always float and are light brown, somtimes clay colored. They seem soft, but formed. Then other times it looks like "rabbit-poop", little balls (sorry for TMI!) Thankfully, he does drink a lot of water which helps to thin out the mucous. Sometimes he sounds like he is choking on it. It is most often green or grey in color. He is currently on Azithromycin for 5 days and then the doctor wants him to take it every other day for 2 weeks and then decide if he needs to get an IV. He has been on Augmentin since last August pretty much every month. Sometimes 2x month, for 10 days at a time. He is allergic to Sulfa drugs. He can't seem to catch his breath at times, but will continue to try and play. He wakes up almost daily telling me he is going to need a nap. He doesn't sleep well and seems to have a hard time breathting. So, do you think we are dealing with CF? It sounds like such a variable disease. I commend the parents and families for their strength. Thank you for responding!
 
K

Karenmichelle

Guest
He is on FloVent daily, Xopenex and Flonase. We have done nasal saline rinses, and that does not go well all the time <img src="i/expressions/face-icon-small-smile.gif" border="0"> We have not done any stool testing at this time, but has been discussed to do. His stools are weird to me. He goes several times a day, which is amazing to me with the amount/lack of food eaten. He eats, but then stops because his "tummy hurts and feels full". They do have a lot of mucous in them. But they don't always float and are light brown, somtimes clay colored. They seem soft, but formed. Then other times it looks like "rabbit-poop", little balls (sorry for TMI!) Thankfully, he does drink a lot of water which helps to thin out the mucous. Sometimes he sounds like he is choking on it. It is most often green or grey in color. He is currently on Azithromycin for 5 days and then the doctor wants him to take it every other day for 2 weeks and then decide if he needs to get an IV. He has been on Augmentin since last August pretty much every month. Sometimes 2x month, for 10 days at a time. He is allergic to Sulfa drugs. He can't seem to catch his breath at times, but will continue to try and play. He wakes up almost daily telling me he is going to need a nap. He doesn't sleep well and seems to have a hard time breathting. So, do you think we are dealing with CF? It sounds like such a variable disease. I commend the parents and families for their strength. Thank you for responding!
 
K

Karenmichelle

Guest
He is on FloVent daily, Xopenex and Flonase. We have done nasal saline rinses, and that does not go well all the time <img src="i/expressions/face-icon-small-smile.gif" border="0"> We have not done any stool testing at this time, but has been discussed to do. His stools are weird to me. He goes several times a day, which is amazing to me with the amount/lack of food eaten. He eats, but then stops because his "tummy hurts and feels full". They do have a lot of mucous in them. But they don't always float and are light brown, somtimes clay colored. They seem soft, but formed. Then other times it looks like "rabbit-poop", little balls (sorry for TMI!) Thankfully, he does drink a lot of water which helps to thin out the mucous. Sometimes he sounds like he is choking on it. It is most often green or grey in color. He is currently on Azithromycin for 5 days and then the doctor wants him to take it every other day for 2 weeks and then decide if he needs to get an IV. He has been on Augmentin since last August pretty much every month. Sometimes 2x month, for 10 days at a time. He is allergic to Sulfa drugs. He can't seem to catch his breath at times, but will continue to try and play. He wakes up almost daily telling me he is going to need a nap. He doesn't sleep well and seems to have a hard time breathting. So, do you think we are dealing with CF? It sounds like such a variable disease. I commend the parents and families for their strength. Thank you for responding!
 
K

Karenmichelle

Guest
Thank you, KKN. Yes, he had a sweat test and it was normal. First one was inconclusive b/c there was not enough sweat. The kid can sweat, so I was surprised at that! And he does taste somewhat salty to me, but guess some do when they sweat. We are two and half weeks into our wait. Keep me posted! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

Karenmichelle

Guest
Thank you, KKN. Yes, he had a sweat test and it was normal. First one was inconclusive b/c there was not enough sweat. The kid can sweat, so I was surprised at that! And he does taste somewhat salty to me, but guess some do when they sweat. We are two and half weeks into our wait. Keep me posted! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

Karenmichelle

Guest
Thank you, KKN. Yes, he had a sweat test and it was normal. First one was inconclusive b/c there was not enough sweat. The kid can sweat, so I was surprised at that! And he does taste somewhat salty to me, but guess some do when they sweat. We are two and half weeks into our wait. Keep me posted! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

Karenmichelle

Guest
..ok, now this is probably TMI. He just had icky, orange/black floating stool. That is what is weird to me...it varies so much. So glad to have a support group I can vent to and not be considered "weird" <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

Karenmichelle

Guest
..ok, now this is probably TMI. He just had icky, orange/black floating stool. That is what is weird to me...it varies so much. So glad to have a support group I can vent to and not be considered "weird" <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
K

Karenmichelle

Guest
..ok, now this is probably TMI. He just had icky, orange/black floating stool. That is what is weird to me...it varies so much. So glad to have a support group I can vent to and not be considered "weird" <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

Ratatosk

Administrator
Staff member
Lots of poop discussion here! <img src="i/expressions/face-icon-small-smile.gif" border="0"> When DS' was a baby his was never greasy, but was fluffy -- yellowish orange and the consistency of cake frosting. Frequent at times -- I'd do 3 diaper changes in a row -- sometimes while changing his diaper. Other times poop would be green.

Until we got his enzyme, digestive issues figured out his stools tended to be frequent and every color of the rainbow except normal brown. They were formed, yet tended to break up easily, sometimes there'd be a ring of residue at the waterline in the toilet.

When DS has cultures done -- we usually get a lab report indicating what bugs are growing and what they're sensitive and resistant to. Example: Steno. Maltophilia resistant to ceftaz sensitive to bactrim... So you may want to look into whether they're using the correct abx for whatever he grew from the bronch. There've been times when DS has developed a cough and we wonder how that could be as he's on tobi, septra, keflex, azithromycin -- and it turns out he's growing something else and needed cipro...
 
R

Ratatosk

Administrator
Staff member
Lots of poop discussion here! <img src="i/expressions/face-icon-small-smile.gif" border="0"> When DS' was a baby his was never greasy, but was fluffy -- yellowish orange and the consistency of cake frosting. Frequent at times -- I'd do 3 diaper changes in a row -- sometimes while changing his diaper. Other times poop would be green.

Until we got his enzyme, digestive issues figured out his stools tended to be frequent and every color of the rainbow except normal brown. They were formed, yet tended to break up easily, sometimes there'd be a ring of residue at the waterline in the toilet.

When DS has cultures done -- we usually get a lab report indicating what bugs are growing and what they're sensitive and resistant to. Example: Steno. Maltophilia resistant to ceftaz sensitive to bactrim... So you may want to look into whether they're using the correct abx for whatever he grew from the bronch. There've been times when DS has developed a cough and we wonder how that could be as he's on tobi, septra, keflex, azithromycin -- and it turns out he's growing something else and needed cipro...
 
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