I hope it is ok that I ask some questions here. I am trying not to google things, because we all know how scary google is, but I am driving myself crazy. <div><br></div><div><ol><li>My son is 2 years and 5 months old. Basically from the beginning we have been trying to figure out what was up with him. </li><li><br></li></ol><ul><li>~Everyone thought he was vision impaired until he was over 4 months old. </li></ul><ol><li><br></li></ol><ul><li>~And then he barely talked. We got him into Early Intervention, and before long he had caught up, though we left with a Sensory Processing Disorder "diagnosis"(it all depended on who we talked to, haha). </li><li><br></li><li>~He is under sensitive to things(he had an allergy test a week ago, 25 pokes in the back and then a big blood draw with no crying, fussing, he didn't even say ow.) Oh, and all the allergies were negative. He has to be REALLY sick for us to even know, he never complains.</li></ul></div><div><br></div><div><br></div><div><ul><li>~When we introduced solid foods, I expected his poo to harden up. It never did, but since I was still nursing, I wasn't TOO surprised. He weened at 20 months, and it still never hardened up. His poop always smells DISGUSTING! I know mine don't smell like cinnamon rolls, but these are strong smelling and almost burn your nose. </li></ul></div><div><br></div><div>~He has moderate obstructive apnea, though the ENT we see said she didn't think that his tonsils were enlarged enough to remove and his adenoids were removed at 12 months. He also has central apnea, though the sleep Dr said now it is at more of the "expected time"</div><div><br></div><div>~We noticed about half a year ago that his temperatures would drop LOW(93.3F) so his Dr ran a whole lot of blood work, everything coming back fine. </div><div><br></div><div>~He has had 5 atypical febrile seizures, with temps only as high as 102, and from only 2 illnesses. </div><div><br></div><div>~He is on zyrtec for seasonal allergies, and pro air puffer for asthma. Allergies were diagnosed just form a constant cough and runny noise, asthma was diagnosed from me noticing him gasping while we were playing at the park. </div><div><br></div><div>~When he cries, he doesn't cry tears. Even when he is really upset, he will drop maybe 1 tear. And that is RARE!</div><div><br></div><div>~When he fusses, like when we are putting him to nap and he is upset, he makes a weird noise. He isn't screaming enough that you would expecting gasping, but it basically sounds like a gasp. (I took a video of it once and uploaded it on youtube, but I am not sure if I can share the link on here.)</div><div><br></div><div>~He only weighs 27 lbs. He hasn't gained weight in at least 5 months, and barely any height. He was 9lbs 3oz when he was born and was a CHUNKER! He consistently gained weight, and has always been on the heavier side. He has WAY fallen off the curve he set for himself.</div><div><br></div><div><br></div><div><br></div><div>Because of his lack of weight gain and the poop, his Dr is checking him for CF. She said basically this is the last thing she can think of to test him for. I wasn't too concerned because he has never had pneumonia or bronchitis, and he passed his newborn CF screening. He does cough a bit, but not an extreme amount. I saw that one of the symptoms of CF was salty skin, so I liked him, lol. It was a bit salty, but not like HUGELY salty. Last night I tried it again, and he was REALLY salty. He wasn't sweating much, if at all. </div><div><br></div><div>So after all of that hoopla, here are my questions. </div><div><br></div><div>1)How salty is TOO salty? Is it like eating at Olive Garden salty or liking a handful of salt salty? Is the skin ALWAYS salty, or just sometimes? </div><div><br></div><div>2)What is the deal with the poop? I saw bulky, fatty, words like that, but I have NO clue what that means! </div><div><br></div><div>3)If it was CF, wouldn't he have worse symptoms? And wouldn't he have failed the newborn screening?</div><div><br></div><div> </div>
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Going for a sweat test, questions
- Thread starter mama647
- Start date
I hope it is ok that I ask some questions here. I am trying not to google things, because we all know how scary google is, but I am driving myself crazy. <br><ol><li>My son is 2 years and 5 months old. Basically from the beginning we have been trying to figure out what was up with him. </li><li><br></li></ol><ul><li>~Everyone thought he was visionimpaired until he was over 4 months old. </li></ul><ol><li><br></li></ol><ul><li>~And then he barely talked. We got him into Early Intervention, and before long he had caught up, though we left with a Sensory Processing Disorder "diagnosis"(it all depended on who we talked to, haha). </li><li><br></li><li>~He is under sensitive to things(he had an allergy test a week ago, 25 pokes in the back and then a big blood draw with no crying, fussing, he didn't even say ow.) Oh, and all the allergies were negative. He has to be REALLY sick for us to even know, he never complains.</li></ul><br><br><ul><li>~When we introduced solid foods, I expected his poo to harden up. It never did, but since I was still nursing, I wasn't TOO surprised. He weened at 20 months, and it still never hardened up. His poop always smells DISGUSTING! I know mine don't smell likecinnamon rolls, but these are strong smelling and almost burn your nose.</li></ul><br>~He has moderate obstructive apnea, though the ENT we see said she didn't think that his tonsils were enlarged enough to remove and hisadenoidswere removed at 12 months. He also has central apnea, though the sleep Dr said now it is at more of the "expected time"<br>~We noticed about half a year ago that his temperatures would drop LOW(93.3F) so his Dr ran a whole lot of blood work, everything coming back fine. <br>~He has had 5 atypical febrile seizures, with temps only as high as 102, and from only 2 illnesses. <br>~He is on zyrtec for seasonal allergies, and pro air puffer for asthma. Allergies were diagnosed just form a constant cough and runny noise, asthma was diagnosed from me noticing him gasping while we were playing at the park. <br>~When he cries, he doesn't cry tears. Even when he is really upset, he will drop maybe 1 tear. And that is RARE!<br>~When he fusses, like when we are putting him to nap and he is upset, he makes a weird noise. He isn't screaming enough that you would expecting gasping, but it basically sounds like a gasp. (I took a video of it once and uploaded it on youtube, but I am not sure if I can share the link on here.)<br>~He only weighs 27 lbs. He hasn't gained weight in at least 5 months, and barely any height. He was 9lbs 3oz when he was born and was a CHUNKER! Heconsistentlygainedweight, and has always been on the heavier side. He has WAY fallen off the curve he set for himself.<br><br><br>Because of his lack of weight gain and the poop, his Dr is checking him for CF. She said basically this is the last thing she can think of to test him for. I wasn't too concerned because he has never hadpneumonia or bronchitis, and he passed his newborn CF screening. He does cough a bit, but not an extreme amount. I saw that one of the symptoms of CF was salty skin, so I liked him, lol. It was a bit salty, but not like HUGELY salty. Last night I tried it again, and he was REALLY salty. He wasn't sweating much, if at all. <br>So after all of that hoopla, here are my questions. <br>1)How salty is TOO salty? Is it like eating at Olive Garden salty or liking a handful of salt salty? Is the skin ALWAYS salty, or just sometimes?<br>2)What is the deal with the poop? I saw bulky, fatty, words like that, but I have NO clue what that means!<br>3)If it was CF, wouldn't he have worse symptoms? And wouldn't he have failed the newborn screening?<br>
I hope it is ok that I ask some questions here. I am trying not to google things, because we all know how scary google is, but I am driving myself crazy. <br><ol><li>My son is 2 years and 5 months old. Basically from the beginning we have been trying to figure out what was up with him. </li><li><br></li></ol><ul><li>~Everyone thought he was visionimpaired until he was over 4 months old. </li></ul><ol><li><br></li></ol><ul><li>~And then he barely talked. We got him into Early Intervention, and before long he had caught up, though we left with a Sensory Processing Disorder "diagnosis"(it all depended on who we talked to, haha). </li><li><br></li><li>~He is under sensitive to things(he had an allergy test a week ago, 25 pokes in the back and then a big blood draw with no crying, fussing, he didn't even say ow.) Oh, and all the allergies were negative. He has to be REALLY sick for us to even know, he never complains.</li></ul><br><br><ul><li>~When we introduced solid foods, I expected his poo to harden up. It never did, but since I was still nursing, I wasn't TOO surprised. He weened at 20 months, and it still never hardened up. His poop always smells DISGUSTING! I know mine don't smell likecinnamon rolls, but these are strong smelling and almost burn your nose.</li></ul><br>~He has moderate obstructive apnea, though the ENT we see said she didn't think that his tonsils were enlarged enough to remove and hisadenoidswere removed at 12 months. He also has central apnea, though the sleep Dr said now it is at more of the "expected time"<br>~We noticed about half a year ago that his temperatures would drop LOW(93.3F) so his Dr ran a whole lot of blood work, everything coming back fine. <br>~He has had 5 atypical febrile seizures, with temps only as high as 102, and from only 2 illnesses. <br>~He is on zyrtec for seasonal allergies, and pro air puffer for asthma. Allergies were diagnosed just form a constant cough and runny noise, asthma was diagnosed from me noticing him gasping while we were playing at the park. <br>~When he cries, he doesn't cry tears. Even when he is really upset, he will drop maybe 1 tear. And that is RARE!<br>~When he fusses, like when we are putting him to nap and he is upset, he makes a weird noise. He isn't screaming enough that you would expecting gasping, but it basically sounds like a gasp. (I took a video of it once and uploaded it on youtube, but I am not sure if I can share the link on here.)<br>~He only weighs 27 lbs. He hasn't gained weight in at least 5 months, and barely any height. He was 9lbs 3oz when he was born and was a CHUNKER! Heconsistentlygainedweight, and has always been on the heavier side. He has WAY fallen off the curve he set for himself.<br><br><br>Because of his lack of weight gain and the poop, his Dr is checking him for CF. She said basically this is the last thing she can think of to test him for. I wasn't too concerned because he has never hadpneumonia or bronchitis, and he passed his newborn CF screening. He does cough a bit, but not an extreme amount. I saw that one of the symptoms of CF was salty skin, so I liked him, lol. It was a bit salty, but not like HUGELY salty. Last night I tried it again, and he was REALLY salty. He wasn't sweating much, if at all. <br>So after all of that hoopla, here are my questions. <br>1)How salty is TOO salty? Is it like eating at Olive Garden salty or liking a handful of salt salty? Is the skin ALWAYS salty, or just sometimes?<br>2)What is the deal with the poop? I saw bulky, fatty, words like that, but I have NO clue what that means!<br>3)If it was CF, wouldn't he have worse symptoms? And wouldn't he have failed the newborn screening?<br>
M
Mommafirst
Guest
1) I don't know . . . my daughter is salty but not excessively so.
2) The best description I've seen about the greasy poops is that they are like taco meat, where the greasy orage liquid soaks into the diaper (or floats in the toilet). My daughter doesn't have this issue, so I'm just repeating what I've seen on here.
3) not necessarily. The newborn tests do have a false negative rate, though its very small, it IS possible. And no, he might not be more sick at just 2 years old. Everything is so variable. There are a lot of symptoms you explain that are NOT consistenet with CF, but there are a few that are. You might consider asking your doctor about Schwachmann Diamond Syndrome as it has some similar symptoms both to CF and to some of the others you mention.
I'm sorry you are in such a tough place...the search for answers is really difficult.
2) The best description I've seen about the greasy poops is that they are like taco meat, where the greasy orage liquid soaks into the diaper (or floats in the toilet). My daughter doesn't have this issue, so I'm just repeating what I've seen on here.
3) not necessarily. The newborn tests do have a false negative rate, though its very small, it IS possible. And no, he might not be more sick at just 2 years old. Everything is so variable. There are a lot of symptoms you explain that are NOT consistenet with CF, but there are a few that are. You might consider asking your doctor about Schwachmann Diamond Syndrome as it has some similar symptoms both to CF and to some of the others you mention.
I'm sorry you are in such a tough place...the search for answers is really difficult.
M
Mommafirst
Guest
1) I don't know . . . my daughter is salty but not excessively so.
2) The best description I've seen about the greasy poops is that they are like taco meat, where the greasy orage liquid soaks into the diaper (or floats in the toilet). My daughter doesn't have this issue, so I'm just repeating what I've seen on here.
3) not necessarily. The newborn tests do have a false negative rate, though its very small, it IS possible. And no, he might not be more sick at just 2 years old. Everything is so variable. There are a lot of symptoms you explain that are NOT consistenet with CF, but there are a few that are. You might consider asking your doctor about Schwachmann Diamond Syndrome as it has some similar symptoms both to CF and to some of the others you mention.
I'm sorry you are in such a tough place...the search for answers is really difficult.
2) The best description I've seen about the greasy poops is that they are like taco meat, where the greasy orage liquid soaks into the diaper (or floats in the toilet). My daughter doesn't have this issue, so I'm just repeating what I've seen on here.
3) not necessarily. The newborn tests do have a false negative rate, though its very small, it IS possible. And no, he might not be more sick at just 2 years old. Everything is so variable. There are a lot of symptoms you explain that are NOT consistenet with CF, but there are a few that are. You might consider asking your doctor about Schwachmann Diamond Syndrome as it has some similar symptoms both to CF and to some of the others you mention.
I'm sorry you are in such a tough place...the search for answers is really difficult.
M
Mommafirst
Guest
1) I don't know . . . my daughter is salty but not excessively so.
<br />
<br />2) The best description I've seen about the greasy poops is that they are like taco meat, where the greasy orage liquid soaks into the diaper (or floats in the toilet). My daughter doesn't have this issue, so I'm just repeating what I've seen on here.
<br />
<br />3) not necessarily. The newborn tests do have a false negative rate, though its very small, it IS possible. And no, he might not be more sick at just 2 years old. Everything is so variable. There are a lot of symptoms you explain that are NOT consistenet with CF, but there are a few that are. You might consider asking your doctor about Schwachmann Diamond Syndrome as it has some similar symptoms both to CF and to some of the others you mention.
<br />
<br />I'm sorry you are in such a tough place...the search for answers is really difficult.
<br />
<br />2) The best description I've seen about the greasy poops is that they are like taco meat, where the greasy orage liquid soaks into the diaper (or floats in the toilet). My daughter doesn't have this issue, so I'm just repeating what I've seen on here.
<br />
<br />3) not necessarily. The newborn tests do have a false negative rate, though its very small, it IS possible. And no, he might not be more sick at just 2 years old. Everything is so variable. There are a lot of symptoms you explain that are NOT consistenet with CF, but there are a few that are. You might consider asking your doctor about Schwachmann Diamond Syndrome as it has some similar symptoms both to CF and to some of the others you mention.
<br />
<br />I'm sorry you are in such a tough place...the search for answers is really difficult.
Every childs symptoms are different. There can be kids that just mainly have bowel issues and kids that mainly have lung issues or both. Here is my story..My daughters poop would stink anyone out of the room and they were excessive. Her stomach would also swell until I thought it would burst. She was 2 when she was finally diagnosed, after taking her to every dr under the sun and fearing that she may have cancer. Her poop looked like gray clay or sometimes orange playdough. It was very loose and like I said lots of it and stink to high heavens. At 2 she only weighed 24lbs as soon as she got on enzymes she started gaining weight, her poops became normal, and no more swollen stomach. Please let us know if you have other questions. Keep your chin up and I hope everything goes well. God Bless
Every childs symptoms are different. There can be kids that just mainly have bowel issues and kids that mainly have lung issues or both. Here is my story..My daughters poop would stink anyone out of the room and they were excessive. Her stomach would also swell until I thought it would burst. She was 2 when she was finally diagnosed, after taking her to every dr under the sun and fearing that she may have cancer. Her poop looked like gray clay or sometimes orange playdough. It was very loose and like I said lots of it and stink to high heavens. At 2 she only weighed 24lbs as soon as she got on enzymes she started gaining weight, her poops became normal, and no more swollen stomach. Please let us know if you have other questions. Keep your chin up and I hope everything goes well. God Bless
Every childs symptoms are different. There can be kids that just mainly have bowel issues and kids that mainly have lung issues or both. Here is my story..My daughters poop would stink anyone out of the room and they were excessive. Her stomach would also swell until I thought it would burst. She was 2 when she was finally diagnosed, after taking her to every dr under the sun and fearing that she may have cancer. Her poop looked like gray clay or sometimes orange playdough. It was very loose and like I said lots of it and stink to high heavens. At 2 she only weighed 24lbs as soon as she got on enzymes she started gaining weight, her poops became normal, and no more swollen stomach. Please let us know if you have other questions. Keep your chin up and I hope everything goes well. God Bless
I hope that they get you some answers soon so that you are not just sitting there left to worry. Please let us know how it turns out. And I pray that you get the answers that you are looking for. The answer that we got was not the one we were looking for, but am greatful that we received so that Abby could finally be healthy, I just wish that we could have found out sooner. No joke...the very first time we started Abby on enzymes to help her digest food, it was an automatic difference. The very first meal she did not eat as much and our whole life changed. She got better very very quickly, it was so extremely nice to have a healthy little pumpkin so quickly. Though I was deeply saddened and confused about her diagnosis I was so greatful to the wonderful doctors and medication that made my baby feel better. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I hope that they get you some answers soon so that you are not just sitting there left to worry. Please let us know how it turns out. And I pray that you get the answers that you are looking for. The answer that we got was not the one we were looking for, but am greatful that we received so that Abby could finally be healthy, I just wish that we could have found out sooner. No joke...the very first time we started Abby on enzymes to help her digest food, it was an automatic difference. The very first meal she did not eat as much and our whole life changed. She got better very very quickly, it was so extremely nice to have a healthy little pumpkin so quickly. Though I was deeply saddened and confused about her diagnosis I was so greatful to the wonderful doctors and medication that made my baby feel better. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I hope that they get you some answers soon so that you are not just sitting there left to worry. Please let us know how it turns out. And I pray that you get the answers that you are looking for. The answer that we got was not the one we were looking for, but am greatful that we received so that Abby could finally be healthy, I just wish that we could have found out sooner. No joke...the very first time we started Abby on enzymes to help her digest food, it was an automatic difference. The very first meal she did not eat as much and our whole life changed. She got better very very quickly, it was so extremely nice to have a healthy little pumpkin so quickly. Though I was deeply saddened and confused about her diagnosis I was so greatful to the wonderful doctors and medication that made my baby feel better. <img src="i/expressions/face-icon-small-smile.gif" border="0">