questions about symptoms in toddler

A

amndmnk

New member
ok. thank you for that info. I have asked repeatedly for a vitamin test....his pediatrician told me she would have to research it and they never called back. I also asked the endocrinologist about it and he did not seem willing to order it either.
<br />We have since moved and have a new pediatrician. I am hoping we end up with some answers. I had read that article from searching false negatives. I just can't find any other reason why my son cannot gain any weight.
<br />thanks, Amanda
 
R

Ratatosk

Administrator
Staff member
DS' symptoms were primarily digestive -- was born with a bowel obstruction. Didn't really have any respiratory issues, though did get bronchitis after he came home from the hospital and he also cultured some common CF bugs, but no symptoms other that a horribly stuffy nose. In fact his nose NEVER EVER ran until he was started on pulmozyme at age 2 1/2 and I was shocked and amazed as I'd never seen that before. We too would use saline drops/spray and a dreaded bulb syringe to get that nasty stuff out of his nose so he could breathe (and eat).

Have they ever done a fecal fat test on your son's stools to determine if he's malabsorbing/pancreatic insufficient. A friend of mine's daughter had constipation issues -- she was diagnosed at 18 months after a doctor did a sweat test to "rule out CF".

We were told years ago by a relative, who is an attorney specializing in medical cases that if we request a test be done by a doctor and he/she refuses -- ask the doctor to put that in writing and place it in our child's file that "parents requested a ____, we declined because...." Usually they don't like to have a paper trail.
 
R

Ratatosk

Administrator
Staff member
DS' symptoms were primarily digestive -- was born with a bowel obstruction. Didn't really have any respiratory issues, though did get bronchitis after he came home from the hospital and he also cultured some common CF bugs, but no symptoms other that a horribly stuffy nose. In fact his nose NEVER EVER ran until he was started on pulmozyme at age 2 1/2 and I was shocked and amazed as I'd never seen that before. We too would use saline drops/spray and a dreaded bulb syringe to get that nasty stuff out of his nose so he could breathe (and eat).

Have they ever done a fecal fat test on your son's stools to determine if he's malabsorbing/pancreatic insufficient. A friend of mine's daughter had constipation issues -- she was diagnosed at 18 months after a doctor did a sweat test to "rule out CF".

We were told years ago by a relative, who is an attorney specializing in medical cases that if we request a test be done by a doctor and he/she refuses -- ask the doctor to put that in writing and place it in our child's file that "parents requested a ____, we declined because...." Usually they don't like to have a paper trail.
 
R

Ratatosk

Administrator
Staff member
DS' symptoms were primarily digestive -- was born with a bowel obstruction. Didn't really have any respiratory issues, though did get bronchitis after he came home from the hospital and he also cultured some common CF bugs, but no symptoms other that a horribly stuffy nose. In fact his nose NEVER EVER ran until he was started on pulmozyme at age 2 1/2 and I was shocked and amazed as I'd never seen that before. We too would use saline drops/spray and a dreaded bulb syringe to get that nasty stuff out of his nose so he could breathe (and eat).
<br />
<br />Have they ever done a fecal fat test on your son's stools to determine if he's malabsorbing/pancreatic insufficient. A friend of mine's daughter had constipation issues -- she was diagnosed at 18 months after a doctor did a sweat test to "rule out CF".
<br />
<br />We were told years ago by a relative, who is an attorney specializing in medical cases that if we request a test be done by a doctor and he/she refuses -- ask the doctor to put that in writing and place it in our child's file that "parents requested a ____, we declined because...." Usually they don't like to have a paper trail.
 
A

amndmnk

New member
Wow I wish I had ever heard that. Tests refused to this point include: MRI, Fragile X, vitamin test, metabolic panel, complete thyroid testing, allergy panel, the list goes on.
His gastroenterologist had done a bunch of tests and I know I scooped poop for at least three of them. I submitted as much mucus as possible into all of the containers. The tests all came back normal. I am positive he was tested for malabsorption.
He has never really been sick except cold bugs that the other kids had too. The runny nose has been the past three months or so. We just moved so I am unsure if it could be allergies at all. My four other kids are all having sinus problems. My husband and his mother both have sinus issues. They are both always clearing their throats. I am not sure that type of thing passes down.
I feel like his developmental delays could be due to malnutrition. We have been dealing with this his whole life and i am so tired of getting nowhere. i can't figure out why he doesn't seem to use his food. thanks, Amanda
 
A

amndmnk

New member
Wow I wish I had ever heard that. Tests refused to this point include: MRI, Fragile X, vitamin test, metabolic panel, complete thyroid testing, allergy panel, the list goes on.
His gastroenterologist had done a bunch of tests and I know I scooped poop for at least three of them. I submitted as much mucus as possible into all of the containers. The tests all came back normal. I am positive he was tested for malabsorption.
He has never really been sick except cold bugs that the other kids had too. The runny nose has been the past three months or so. We just moved so I am unsure if it could be allergies at all. My four other kids are all having sinus problems. My husband and his mother both have sinus issues. They are both always clearing their throats. I am not sure that type of thing passes down.
I feel like his developmental delays could be due to malnutrition. We have been dealing with this his whole life and i am so tired of getting nowhere. i can't figure out why he doesn't seem to use his food. thanks, Amanda
 
A

amndmnk

New member
Wow I wish I had ever heard that. Tests refused to this point include: MRI, Fragile X, vitamin test, metabolic panel, complete thyroid testing, allergy panel, the list goes on.
<br />His gastroenterologist had done a bunch of tests and I know I scooped poop for at least three of them. I submitted as much mucus as possible into all of the containers. The tests all came back normal. I am positive he was tested for malabsorption.
<br />He has never really been sick except cold bugs that the other kids had too. The runny nose has been the past three months or so. We just moved so I am unsure if it could be allergies at all. My four other kids are all having sinus problems. My husband and his mother both have sinus issues. They are both always clearing their throats. I am not sure that type of thing passes down.
<br />I feel like his developmental delays could be due to malnutrition. We have been dealing with this his whole life and i am so tired of getting nowhere. i can't figure out why he doesn't seem to use his food. thanks, Amanda
<br />
 
R

Ratatosk

Administrator
Staff member
IMO, you can request his medical records. If you know the dates the various tests were conducted, most clinics, hospitals have a form your can download, fill out and mail to them and they'll send you the results. We have DS' labs done locally and then I fill out a release form and have the forms faxed to DS' doctor in the city who is with a different clinic system and a copy to myself.

Also, unless the doctor specifically asks for a CF culture on the sputum/mucus, sometimes it's not handled properly. Last time, I got a call a day after the culture was taken and was told it was clear. It usually takes 5-7 days for us.
 
R

Ratatosk

Administrator
Staff member
IMO, you can request his medical records. If you know the dates the various tests were conducted, most clinics, hospitals have a form your can download, fill out and mail to them and they'll send you the results. We have DS' labs done locally and then I fill out a release form and have the forms faxed to DS' doctor in the city who is with a different clinic system and a copy to myself.

Also, unless the doctor specifically asks for a CF culture on the sputum/mucus, sometimes it's not handled properly. Last time, I got a call a day after the culture was taken and was told it was clear. It usually takes 5-7 days for us.
 
R

Ratatosk

Administrator
Staff member
IMO, you can request his medical records. If you know the dates the various tests were conducted, most clinics, hospitals have a form your can download, fill out and mail to them and they'll send you the results. We have DS' labs done locally and then I fill out a release form and have the forms faxed to DS' doctor in the city who is with a different clinic system and a copy to myself.
<br />
<br />Also, unless the doctor specifically asks for a CF culture on the sputum/mucus, sometimes it's not handled properly. Last time, I got a call a day after the culture was taken and was told it was clear. It usually takes 5-7 days for us.
 
A

amndmnk

New member
ok. he is going to a new gastro, well the PA, on Monday. I will ask about the mucus and CF culture. I guess if he is absorbing properly then the failure to thrive would not be due to CF? And if both my boys had an uncommon mutation causing it then it makes sense that they would both pass a newborn screen right? Any ideas on other questions to ask the gastro office?
He does not seem to tolerate any dairy or soy at all. Not sure if that can be causing mucous. I am really baffled by the persistent runny nose.
They are testy about medical records in Colorado. Since we have moved to MI I have seen more paperwork and information about my son that I ever could have hoped for. I have been planning to get his records from the new office so now I have even more motivation.
Also, how can I boost his calories with a bottle diet....it seems like he needs to be older for Scandishake and other major boosters. I am feeding him around 1200 calories per day. He is maintaining but nothing more. If anyone may have any ideas.....obviously I will be asking the gastro as well. thanks Amanda
 
A

amndmnk

New member
ok. he is going to a new gastro, well the PA, on Monday. I will ask about the mucus and CF culture. I guess if he is absorbing properly then the failure to thrive would not be due to CF? And if both my boys had an uncommon mutation causing it then it makes sense that they would both pass a newborn screen right? Any ideas on other questions to ask the gastro office?
He does not seem to tolerate any dairy or soy at all. Not sure if that can be causing mucous. I am really baffled by the persistent runny nose.
They are testy about medical records in Colorado. Since we have moved to MI I have seen more paperwork and information about my son that I ever could have hoped for. I have been planning to get his records from the new office so now I have even more motivation.
Also, how can I boost his calories with a bottle diet....it seems like he needs to be older for Scandishake and other major boosters. I am feeding him around 1200 calories per day. He is maintaining but nothing more. If anyone may have any ideas.....obviously I will be asking the gastro as well. thanks Amanda
 
A

amndmnk

New member
ok. he is going to a new gastro, well the PA, on Monday. I will ask about the mucus and CF culture. I guess if he is absorbing properly then the failure to thrive would not be due to CF? And if both my boys had an uncommon mutation causing it then it makes sense that they would both pass a newborn screen right? Any ideas on other questions to ask the gastro office?
<br />He does not seem to tolerate any dairy or soy at all. Not sure if that can be causing mucous. I am really baffled by the persistent runny nose.
<br />They are testy about medical records in Colorado. Since we have moved to MI I have seen more paperwork and information about my son that I ever could have hoped for. I have been planning to get his records from the new office so now I have even more motivation.
<br />Also, how can I boost his calories with a bottle diet....it seems like he needs to be older for Scandishake and other major boosters. I am feeding him around 1200 calories per day. He is maintaining but nothing more. If anyone may have any ideas.....obviously I will be asking the gastro as well. thanks Amanda
<br />
 
M

mom2owen

New member
Hi, I don't know all you have been tested for but I did just read about the dairy ad soy problems. I was going to ask about that. What were his reactions to them when they were in his diet? My son was severely sensitive to both as well. He actually wound up throwing up all foods at one point so he had to go completely on formula (he was 5 and g-tube fed). We have a horrible time with weight and growth. I was told that if it was allergies (though his allergy tests were all negative) he would start gaining weight when he went off of the offending foods. When that didn't happen, they realized it was not an allergy but malabsorption and the vomiting and diarrhea were actually protective mechanisms to get it out of him vs. getting a blockage.
Owen is now on Creon and it works wonders. I don't know if that might be worth asking your GI about. He gained so much weight (I think it was about 7-9 pounds) in just weeks! Truly our little miracle. He is eating almost all foods now, even some dairy. He still does get tube fed too for extra calories, he loses weight rapidly without it.
Anyway, I am sorry you are dealing with this. I hope you get answers soon. Keep trying and stay positive. I know that is very hard to do. If you want to PM any questions, feel free. We have soooo btdt!
 
M

mom2owen

New member
Hi, I don't know all you have been tested for but I did just read about the dairy ad soy problems. I was going to ask about that. What were his reactions to them when they were in his diet? My son was severely sensitive to both as well. He actually wound up throwing up all foods at one point so he had to go completely on formula (he was 5 and g-tube fed). We have a horrible time with weight and growth. I was told that if it was allergies (though his allergy tests were all negative) he would start gaining weight when he went off of the offending foods. When that didn't happen, they realized it was not an allergy but malabsorption and the vomiting and diarrhea were actually protective mechanisms to get it out of him vs. getting a blockage.
Owen is now on Creon and it works wonders. I don't know if that might be worth asking your GI about. He gained so much weight (I think it was about 7-9 pounds) in just weeks! Truly our little miracle. He is eating almost all foods now, even some dairy. He still does get tube fed too for extra calories, he loses weight rapidly without it.
Anyway, I am sorry you are dealing with this. I hope you get answers soon. Keep trying and stay positive. I know that is very hard to do. If you want to PM any questions, feel free. We have soooo btdt!
 
M

mom2owen

New member
Hi, I don't know all you have been tested for but I did just read about the dairy ad soy problems. I was going to ask about that. What were his reactions to them when they were in his diet? My son was severely sensitive to both as well. He actually wound up throwing up all foods at one point so he had to go completely on formula (he was 5 and g-tube fed). We have a horrible time with weight and growth. I was told that if it was allergies (though his allergy tests were all negative) he would start gaining weight when he went off of the offending foods. When that didn't happen, they realized it was not an allergy but malabsorption and the vomiting and diarrhea were actually protective mechanisms to get it out of him vs. getting a blockage.
<br />Owen is now on Creon and it works wonders. I don't know if that might be worth asking your GI about. He gained so much weight (I think it was about 7-9 pounds) in just weeks! Truly our little miracle. He is eating almost all foods now, even some dairy. He still does get tube fed too for extra calories, he loses weight rapidly without it.
<br />Anyway, I am sorry you are dealing with this. I hope you get answers soon. Keep trying and stay positive. I know that is very hard to do. If you want to PM any questions, feel free. We have soooo btdt!
 
A

amndmnk

New member
well I thought his main reaction to various dairy and soy baby formulas way back when was mucus in his diapers.
He has never thrown up. The first GI we saw told us to switch him to whole milk as soon as he was 1. He immediately became severely constipated and appeared to be having stomach pain. Since then, that is what he does if he has any dairy. If he has soy, he gets explosive diarrhea that immediately causes a horrible diaper rash. Plus screaming with stomach pain like the dairy.
He did not do too well on Nutramigen or amino acid formulas either.
He had been tested and is not allergic to dairy or soy. He was tested for celiac which seems like the obvious answer to this problem but it was normal. He is gluten free at this point anyway and that has not helped.
I have been giving him pancreas enzymes and he is not constipated anymore so far. No weight gain yet but its a little soon. His poop also smells a lot different so I am starting to think that the smell was oil that he had not digested. (I give him coconut oil and flaxseed oil).
I don't feel like any of my son's doctors are ever going to "realize" anything because they don't seem to believe how many calories are going into him with no gain, or that whole milk makes him sick. I am probably an oversensitive freaked out mom, but he needs help and I can't get it anywhere. I am so afraid his developmental issues are due to malnourishment.....and that it will be too late to help him.
 
A

amndmnk

New member
well I thought his main reaction to various dairy and soy baby formulas way back when was mucus in his diapers.
He has never thrown up. The first GI we saw told us to switch him to whole milk as soon as he was 1. He immediately became severely constipated and appeared to be having stomach pain. Since then, that is what he does if he has any dairy. If he has soy, he gets explosive diarrhea that immediately causes a horrible diaper rash. Plus screaming with stomach pain like the dairy.
He did not do too well on Nutramigen or amino acid formulas either.
He had been tested and is not allergic to dairy or soy. He was tested for celiac which seems like the obvious answer to this problem but it was normal. He is gluten free at this point anyway and that has not helped.
I have been giving him pancreas enzymes and he is not constipated anymore so far. No weight gain yet but its a little soon. His poop also smells a lot different so I am starting to think that the smell was oil that he had not digested. (I give him coconut oil and flaxseed oil).
I don't feel like any of my son's doctors are ever going to "realize" anything because they don't seem to believe how many calories are going into him with no gain, or that whole milk makes him sick. I am probably an oversensitive freaked out mom, but he needs help and I can't get it anywhere. I am so afraid his developmental issues are due to malnourishment.....and that it will be too late to help him.
 
A

amndmnk

New member
well I thought his main reaction to various dairy and soy baby formulas way back when was mucus in his diapers.
<br />He has never thrown up. The first GI we saw told us to switch him to whole milk as soon as he was 1. He immediately became severely constipated and appeared to be having stomach pain. Since then, that is what he does if he has any dairy. If he has soy, he gets explosive diarrhea that immediately causes a horrible diaper rash. Plus screaming with stomach pain like the dairy.
<br />He did not do too well on Nutramigen or amino acid formulas either.
<br />He had been tested and is not allergic to dairy or soy. He was tested for celiac which seems like the obvious answer to this problem but it was normal. He is gluten free at this point anyway and that has not helped.
<br />I have been giving him pancreas enzymes and he is not constipated anymore so far. No weight gain yet but its a little soon. His poop also smells a lot different so I am starting to think that the smell was oil that he had not digested. (I give him coconut oil and flaxseed oil).
<br />I don't feel like any of my son's doctors are ever going to "realize" anything because they don't seem to believe how many calories are going into him with no gain, or that whole milk makes him sick. I am probably an oversensitive freaked out mom, but he needs help and I can't get it anywhere. I am so afraid his developmental issues are due to malnourishment.....and that it will be too late to help him.
<br />
 
R

Ratatosk

Administrator
Staff member
DS was on formula until he was 18 months old 'cuz every time we switched he got horribly constipated. Eventually he got used to whole milk -- actually carnation instant breakfast made with whole milk and cream. Also added olive oil and butter to a lot of his foods. Whole milk yogurt....
 
You must log in or register to reply here.
Top