need help for 16 month old

[anonymous]

Hi I hope someone can help answer some ?????? My 16 month old has had foul smelling loose stools/diarrhea on and off since she was 7 weeks old . It usually lasts 2-3 weeks at a time. Doctor told me at 8 weeks that is was a milk/soya allergy and changed her milk to nutramigen which did not help . At 4 months she had bronchiolitis rsv . doctors changed her milk again to neocate this helped with the reflux but the loose stools continued.I have been told it is lactose intolerance ,teething ,toddlers diarrhea etc etc etc. She is normal height weight and this is why the doctor is not concerned . He said if she had cf she would be underweight. I know it can not go on like this and something is wrong .Example this morning there was so much stool in nappy/diaper it leaked was all over her and the bed . It also has a very distinct smell like vinegar . she can have as many as 7-8 a day . I think because she is on neocate she is not loosing weight as that milk is already broken down she doesnt have to digest it??She also has a constant wheeze however this has stopped since doc put her on an inhaler 2 weeks ago .She is always very thirsty.

Q 1 can you have cf and be a normal weight
Q 2 can your stools be normal then back to foul smelling loose or are the stools loose all the time
Q 3 Do certain foods make a person with cf have loose stools or all foods

Sorry this is so long but i am not sure where else to look any response would be greatly appreciated

 

[anonymous]

Hi I hope someone can help answer some ?????? My 16 month old has had foul smelling loose stools/diarrhea on and off since she was 7 weeks old . It usually lasts 2-3 weeks at a time. Doctor told me at 8 weeks that is was a milk/soya allergy and changed her milk to nutramigen which did not help . At 4 months she had bronchiolitis rsv . doctors changed her milk again to neocate this helped with the reflux but the loose stools continued.I have been told it is lactose intolerance ,teething ,toddlers diarrhea etc etc etc. She is normal height weight and this is why the doctor is not concerned . He said if she had cf she would be underweight. I know it can not go on like this and something is wrong .Example this morning there was so much stool in nappy/diaper it leaked was all over her and the bed . It also has a very distinct smell like vinegar . she can have as many as 7-8 a day . I think because she is on neocate she is not loosing weight as that milk is already broken down she doesnt have to digest it??She also has a constant wheeze however this has stopped since doc put her on an inhaler 2 weeks ago .She is always very thirsty.

Q 1 can you have cf and be a normal weight
Q 2 can your stools be normal then back to foul smelling loose or are the stools loose all the time
Q 3 Do certain foods make a person with cf have loose stools or all foods

Sorry this is so long but i am not sure where else to look any response would be greatly appreciated

 

[julie]

1. Yes, you can have CF and be of normal weight. My husband (now 24) went undiagnosed until he was 18 months. That was shortly after his mom stopped breastfeeding and he started loosing weight, slowly (but still, loosing weight) and started having some other complications. He sticks to a very rigid diet now that he is older and is 6ft, 185-190lbs, not an easy feat for a CFer!
2. The stools are not loose all the time (at least in our experience), but more or less depends on what has been eaten, if the digestive enzymes were taken and the stress level of the person at the time so to answer your third question...
3. In my husbands case, it is usually certain foods. Milk, greasy foods (KFC, Taco bell, some steaks depending on how they are cooked) But if he does eat something greasy and then takes his enzymes, there is usually no problem. On the days he forgets though, that poor guy is in the bathroom constantaly.
I would be concerned that your physician is NOT concerned. There are so many different "signs" that can be attributed to CF. Some people have a lot of CF related issues, while others have one, or maybe two. You have every right to press the issue with the doctor, it is after all your daughter and (if you have it) your insurance. Some insurance companies readly cover the test, and some require a preauthorization. If the clinic where your daughter is seen isn't much help, I would recommend calling them and asking for the ICD9 code for a CF sweat test, and call the insurance company yourself. With that number they can look it up and tell you if it is a covered benefit, if it needs a preauth...They may even be able to look it up without the code, but that might speed it up.
If the test comes back negative, yeah. That is great news and you can go on investigating other "issues" relating to the stool problems. But if it comes back positive, the longer you wait the more your child will suffer. I would get on that doctor of yours, and if he won't help you, find someone who will!

 

[julie]

1. Yes, you can have CF and be of normal weight. My husband (now 24) went undiagnosed until he was 18 months. That was shortly after his mom stopped breastfeeding and he started loosing weight, slowly (but still, loosing weight) and started having some other complications. He sticks to a very rigid diet now that he is older and is 6ft, 185-190lbs, not an easy feat for a CFer!
2. The stools are not loose all the time (at least in our experience), but more or less depends on what has been eaten, if the digestive enzymes were taken and the stress level of the person at the time so to answer your third question...
3. In my husbands case, it is usually certain foods. Milk, greasy foods (KFC, Taco bell, some steaks depending on how they are cooked) But if he does eat something greasy and then takes his enzymes, there is usually no problem. On the days he forgets though, that poor guy is in the bathroom constantaly.
I would be concerned that your physician is NOT concerned. There are so many different "signs" that can be attributed to CF. Some people have a lot of CF related issues, while others have one, or maybe two. You have every right to press the issue with the doctor, it is after all your daughter and (if you have it) your insurance. Some insurance companies readly cover the test, and some require a preauthorization. If the clinic where your daughter is seen isn't much help, I would recommend calling them and asking for the ICD9 code for a CF sweat test, and call the insurance company yourself. With that number they can look it up and tell you if it is a covered benefit, if it needs a preauth...They may even be able to look it up without the code, but that might speed it up.
If the test comes back negative, yeah. That is great news and you can go on investigating other "issues" relating to the stool problems. But if it comes back positive, the longer you wait the more your child will suffer. I would get on that doctor of yours, and if he won't help you, find someone who will!

 

[anonymous]

I agree you do need to pursue the issue. My daughter was diagnosed at 6 months old. She was a preemie. I like you knew something was wrong. She would have loose foul smelling stools but then not so bad. She was gaining weight. She was also wheezing a lot and they put her on nebulizer stating it was a asthma component. Finally we got a new pediatrician and she was wonderful. She admitted us to Childrens Hospital and we were there for two weeks. My mom said to ask about CF. When I asked the doctor he said oh no she couldnt have CF those babies look like refugee babies. Very underweight that was about day number 6 after they had tested her for pertussis and everything else under the sun. Needless to say about day 10 they finally tested her for it after I kept pressing the issue and boom she had it.

I would keep on them and insist to test her for it to rule out. Trust me moms know best. Another thing you may want to do is lick her forehead and see if she tastes extra salty. My daughter always had a salty taste to her.

Also CF kids arent always underweight it depends on each person. Rachel is 8 and weighs 81 pounds which is in the 80th percentile for her she does well now that she is on enzymes.

Let me know how it goes and good luck. If she does have CF you wont believe the difference it will make when she starts the meds.

Teri<img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[anonymous]

I agree you do need to pursue the issue. My daughter was diagnosed at 6 months old. She was a preemie. I like you knew something was wrong. She would have loose foul smelling stools but then not so bad. She was gaining weight. She was also wheezing a lot and they put her on nebulizer stating it was a asthma component. Finally we got a new pediatrician and she was wonderful. She admitted us to Childrens Hospital and we were there for two weeks. My mom said to ask about CF. When I asked the doctor he said oh no she couldnt have CF those babies look like refugee babies. Very underweight that was about day number 6 after they had tested her for pertussis and everything else under the sun. Needless to say about day 10 they finally tested her for it after I kept pressing the issue and boom she had it.

I would keep on them and insist to test her for it to rule out. Trust me moms know best. Another thing you may want to do is lick her forehead and see if she tastes extra salty. My daughter always had a salty taste to her.

Also CF kids arent always underweight it depends on each person. Rachel is 8 and weighs 81 pounds which is in the 80th percentile for her she does well now that she is on enzymes.

Let me know how it goes and good luck. If she does have CF you wont believe the difference it will make when she starts the meds.

Teri<img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[cfgirl38]

I have never been under weight. In fact right now I'm about 20 lbs over weight. I don't eat excessive calories either. They are right that you don't always have loose stools. I just started those symptoms in the past year. I also tested negative 2 times at the same hospital. So I was diagnost very late at 30yrs old. So try to get her tested some where where they possibly have a CF center in the hospital. My Dr. didn't want me to go to a CF center hospital so I had to write a letter to my HMO. I wish you well. Eva

 

[cfgirl38]

I have never been under weight. In fact right now I'm about 20 lbs over weight. I don't eat excessive calories either. They are right that you don't always have loose stools. I just started those symptoms in the past year. I also tested negative 2 times at the same hospital. So I was diagnost very late at 30yrs old. So try to get her tested some where where they possibly have a CF center in the hospital. My Dr. didn't want me to go to a CF center hospital so I had to write a letter to my HMO. I wish you well. Eva

 

[anonymous]

First I want to wish you luck on your journey, which ever way it goes. My daughter has CF and her doctor gave me the best advice whcih I try to follow..."Trust your instincts" You are her Mom. There are things you just KNOW. Get her tested...If you need to pay out of pocket to go to a CF care center, go even just to get her tested. Won't you feel better to hear. "No, Mrs. So and So, your daughter doesn't have CF" And then feel a little silly if it isn't CF (I will say a little prayer) BUT if it is CF you can start her treatments right away. The difference between my daughter pre and post diagnosis were remarkable. You are your daughters' best advocate. I will tell you I knew something was amiss with my daughter, but didn't know what. She always gained weight (although she only weighed 20 lbs on her 2nd birthday) only a little at a time. (She ate like a truck driver) My regret is that I didn't know sooner. You are a good Mom, not a crazy Mom. I say 7-8 bowel movements a day mean something needs to be checked. Oh, the more fatty the meal, the worse my daughters bm's are. Good Luck.

 

[anonymous]

First I want to wish you luck on your journey, which ever way it goes. My daughter has CF and her doctor gave me the best advice whcih I try to follow..."Trust your instincts" You are her Mom. There are things you just KNOW. Get her tested...If you need to pay out of pocket to go to a CF care center, go even just to get her tested. Won't you feel better to hear. "No, Mrs. So and So, your daughter doesn't have CF" And then feel a little silly if it isn't CF (I will say a little prayer) BUT if it is CF you can start her treatments right away. The difference between my daughter pre and post diagnosis were remarkable. You are your daughters' best advocate. I will tell you I knew something was amiss with my daughter, but didn't know what. She always gained weight (although she only weighed 20 lbs on her 2nd birthday) only a little at a time. (She ate like a truck driver) My regret is that I didn't know sooner. You are a good Mom, not a crazy Mom. I say 7-8 bowel movements a day mean something needs to be checked. Oh, the more fatty the meal, the worse my daughters bm's are. Good Luck.

 

[anonymous]

I agree with everyone's comments. There are so many different mutations that it's hard to pinpoint exact symptoms. In my son's case, we visited several pedicatricians before one took us seriously. Then, they were actually SHOCKED that his sweat test came out positive for cf. My son had normal stools sometimes, but most of the time, they were loose, foul smelling, and often greasy. Be persistant and get a 2nd, 3rd, 4th, etc. opinion. Sounds like you are wise enough to continue checking into her symptoms. Let us know what you find out and hang in there. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Feel free to email me: Bono40@aol.com

Carey

 

[anonymous]

I agree with everyone's comments. There are so many different mutations that it's hard to pinpoint exact symptoms. In my son's case, we visited several pedicatricians before one took us seriously. Then, they were actually SHOCKED that his sweat test came out positive for cf. My son had normal stools sometimes, but most of the time, they were loose, foul smelling, and often greasy. Be persistant and get a 2nd, 3rd, 4th, etc. opinion. Sounds like you are wise enough to continue checking into her symptoms. Let us know what you find out and hang in there. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Feel free to email me: Bono40@aol.com

Carey

 

[allie1]

My daughter also had loose, foul smelling stools 5-6 times a day. Her doctors kept assuring me she was fine b/c she was gaining weight. Needless to say, she was not fine. I wish I would've been more persistant with her doctors b/c she wasn't diagnosed with CF until she was 2 1/2 yrs old. Go with your gut and have her tested. The doctors aren't always right.

Good luck!

Amy

 

[allie1]

My daughter also had loose, foul smelling stools 5-6 times a day. Her doctors kept assuring me she was fine b/c she was gaining weight. Needless to say, she was not fine. I wish I would've been more persistant with her doctors b/c she wasn't diagnosed with CF until she was 2 1/2 yrs old. Go with your gut and have her tested. The doctors aren't always right.

Good luck!

Amy

 

[anonymous]

Thank you everyone for your kind words and advice, my daughters dietitian is going to contact her ped today. Dietitian agrees it is not related to milk alergies ,lactose intolerance . She has been treated for milk allergies even though test came back negative. I will keep you posted on her outcome thank you for all your help Barbara

 

[anonymous]

Thank you everyone for your kind words and advice, my daughters dietitian is going to contact her ped today. Dietitian agrees it is not related to milk alergies ,lactose intolerance . She has been treated for milk allergies even though test came back negative. I will keep you posted on her outcome thank you for all your help Barbara

 

[midwestmama]

Good Luck Barbara. And like everyone has said, Trust your instincts! It seems like peds are too lax on this. I too 'knew' something was wrong and wasn't taken serious until my son was 12 months. The hospital we went to ruled out CF and Celiac Sprue and told me it was a phase. Even my husband was getting frustrated with me saying it has to be something. I pursued it and went to a CF clinic and they did a blood test and were able to diagnose it. I was so tired of waking every morning and cleaning his stools off the bed and his pj's. I even video taped it one morning to take to my ped because he wasn't taking me serious. Well, he didn't want to see it, but he started to take me serious. Now that we can treat him he is doing much better. There are still 4-5 stools a day, but they aren't a blow out everytime now!

Best wishes and don't settle until you are comfortable with what the Dr's are saying!
Shelly

 

[midwestmama]

Good Luck Barbara. And like everyone has said, Trust your instincts! It seems like peds are too lax on this. I too 'knew' something was wrong and wasn't taken serious until my son was 12 months. The hospital we went to ruled out CF and Celiac Sprue and told me it was a phase. Even my husband was getting frustrated with me saying it has to be something. I pursued it and went to a CF clinic and they did a blood test and were able to diagnose it. I was so tired of waking every morning and cleaning his stools off the bed and his pj's. I even video taped it one morning to take to my ped because he wasn't taking me serious. Well, he didn't want to see it, but he started to take me serious. Now that we can treat him he is doing much better. There are still 4-5 stools a day, but they aren't a blow out everytime now!

Best wishes and don't settle until you are comfortable with what the Dr's are saying!
Shelly