Still waiting for any diagnosis!

[sdelorenzo]

Call the pediatricians office and ask the nurse what is the name of the GI dr who they are referring him to. Call that GI dr yourself and ask to speak to his/her nurse. Explain to the nurse ALL of his symptoms and that you are very concerned. If you get a voicemail of the nurse, leave the symptoms, just don't ask to get a call back. That should help you get in ASAP, not end of July.
Sharon, mom of Sophia, 8 and Jack, 6 both with CF, Grant, 17 months no CF

 

[sdelorenzo]

Call the pediatricians office and ask the nurse what is the name of the GI dr who they are referring him to. Call that GI dr yourself and ask to speak to his/her nurse. Explain to the nurse ALL of his symptoms and that you are very concerned. If you get a voicemail of the nurse, leave the symptoms, just don't ask to get a call back. That should help you get in ASAP, not end of July.
<br />Sharon, mom of Sophia, 8 and Jack, 6 both with CF, Grant, 17 months no CF

 

[Eden]

It's been a while since I last wrote. I was hoping someone could tell me if they have experienced anything similar. Some of my son's symptoms seem inconsistent with CF. I've been paying a lot more attention to his BM. It seems to vary so much. Lately it's been either pale tan or pale yellow, bulky and floating or green (I've seen both light and dark) and sinks. It's almost 50/50. This doesn't sound like PI to me. He does however, still have a cough which is always written off as asthma.

I did get him to the GI doctor earlier, July 1st. They took blood and talked with us. I was told that the blood work (for celiac, allergies and antibodies) all came back in the normal range. However, he is anemic. When they called with the negative celiac results, they said that the doctor wants to do an upper and lower endoscopy w/ biopsy and a colonoscopy. This is scheduled for tomorrow. He asked if we had CF in the family and I told him no. He asked if he has any lung issues and I told him about those. Then he blew off CF and said he thinks it's celiac, which is why they want to have a look. Maybe it is, I feel very lost and confused and sort of like I'm just being overly paranoid. I figure I will take it one step at a time. Get the results from the procedure tomorrow and if that is negative, I will ask for the sweat test and/or genetic testing.

I was wondering if anyone could share any of their atypical symptoms. I know that symptoms vary in each case, but some of my son's symptoms seem right on w/ CF and then others seem off. Thanks again everyone.

 

[Eden]

It's been a while since I last wrote. I was hoping someone could tell me if they have experienced anything similar. Some of my son's symptoms seem inconsistent with CF. I've been paying a lot more attention to his BM. It seems to vary so much. Lately it's been either pale tan or pale yellow, bulky and floating or green (I've seen both light and dark) and sinks. It's almost 50/50. This doesn't sound like PI to me. He does however, still have a cough which is always written off as asthma.

I did get him to the GI doctor earlier, July 1st. They took blood and talked with us. I was told that the blood work (for celiac, allergies and antibodies) all came back in the normal range. However, he is anemic. When they called with the negative celiac results, they said that the doctor wants to do an upper and lower endoscopy w/ biopsy and a colonoscopy. This is scheduled for tomorrow. He asked if we had CF in the family and I told him no. He asked if he has any lung issues and I told him about those. Then he blew off CF and said he thinks it's celiac, which is why they want to have a look. Maybe it is, I feel very lost and confused and sort of like I'm just being overly paranoid. I figure I will take it one step at a time. Get the results from the procedure tomorrow and if that is negative, I will ask for the sweat test and/or genetic testing.

I was wondering if anyone could share any of their atypical symptoms. I know that symptoms vary in each case, but some of my son's symptoms seem right on w/ CF and then others seem off. Thanks again everyone.

 

[Eden]

It's been a while since I last wrote. I was hoping someone could tell me if they have experienced anything similar. Some of my son's symptoms seem inconsistent with CF. I've been paying a lot more attention to his BM. It seems to vary so much. Lately it's been either pale tan or pale yellow, bulky and floating or green (I've seen both light and dark) and sinks. It's almost 50/50. This doesn't sound like PI to me. He does however, still have a cough which is always written off as asthma.
<br />
<br />I did get him to the GI doctor earlier, July 1st. They took blood and talked with us. I was told that the blood work (for celiac, allergies and antibodies) all came back in the normal range. However, he is anemic. When they called with the negative celiac results, they said that the doctor wants to do an upper and lower endoscopy w/ biopsy and a colonoscopy. This is scheduled for tomorrow. He asked if we had CF in the family and I told him no. He asked if he has any lung issues and I told him about those. Then he blew off CF and said he thinks it's celiac, which is why they want to have a look. Maybe it is, I feel very lost and confused and sort of like I'm just being overly paranoid. I figure I will take it one step at a time. Get the results from the procedure tomorrow and if that is negative, I will ask for the sweat test and/or genetic testing.
<br />
<br />I was wondering if anyone could share any of their atypical symptoms. I know that symptoms vary in each case, but some of my son's symptoms seem right on w/ CF and then others seem off. Thanks again everyone.
<br />

 

[Ratatosk]

The pale yellow, bulky and floating or green description you gave pretty much describes what DS had most of his life prior to figuring out his digestive issues last summer.

Also, there are a number of us who have absolutely NO family history. We looked back hundreds of years in geneology records for early deaths, child deaths and other than a stillborn child on my mother's side -- nada.

Have they done a fecal elastase/fecal fat test? Have they done a throat or sputum culture to determine if he's growing and "CF" bugs such as pseudomonas, mrsa, H. Flu, Steno Malophilia...?

 

[Ratatosk]

The pale yellow, bulky and floating or green description you gave pretty much describes what DS had most of his life prior to figuring out his digestive issues last summer.

Also, there are a number of us who have absolutely NO family history. We looked back hundreds of years in geneology records for early deaths, child deaths and other than a stillborn child on my mother's side -- nada.

Have they done a fecal elastase/fecal fat test? Have they done a throat or sputum culture to determine if he's growing and "CF" bugs such as pseudomonas, mrsa, H. Flu, Steno Malophilia...?

 

[Ratatosk]

The pale yellow, bulky and floating or green description you gave pretty much describes what DS had most of his life prior to figuring out his digestive issues last summer.
<br />
<br />Also, there are a number of us who have absolutely NO family history. We looked back hundreds of years in geneology records for early deaths, child deaths and other than a stillborn child on my mother's side -- nada.
<br />
<br />Have they done a fecal elastase/fecal fat test? Have they done a throat or sputum culture to determine if he's growing and "CF" bugs such as pseudomonas, mrsa, H. Flu, Steno Malophilia...?

 

[ymikhale]

you are right about symptoms being different. My dd was diagnosed with neo natal screening and she had no cough and no other symptoms, just kind of liquid stools (from time to time) and was crying a lot after meals. the Ped wrote it off as colics. I am so grateful that we have neonatal screening, otherwise i am sure we would have struggled as well.

On the side note, just b/c no one in your family had CF does not mean your child can't have it. I have never heard of CF before my dd was diagnosed, and neither has anyone in my family on both sides. So I would get all the CF testing done thorougly, just to be sure (I hope it is not CF but if it is, it is really important to start treatment as soon as possible)

 

[ymikhale]

you are right about symptoms being different. My dd was diagnosed with neo natal screening and she had no cough and no other symptoms, just kind of liquid stools (from time to time) and was crying a lot after meals. the Ped wrote it off as colics. I am so grateful that we have neonatal screening, otherwise i am sure we would have struggled as well.

On the side note, just b/c no one in your family had CF does not mean your child can't have it. I have never heard of CF before my dd was diagnosed, and neither has anyone in my family on both sides. So I would get all the CF testing done thorougly, just to be sure (I hope it is not CF but if it is, it is really important to start treatment as soon as possible)

 

[ymikhale]

you are right about symptoms being different. My dd was diagnosed with neo natal screening and she had no cough and no other symptoms, just kind of liquid stools (from time to time) and was crying a lot after meals. the Ped wrote it off as colics. I am so grateful that we have neonatal screening, otherwise i am sure we would have struggled as well.
<br />
<br />On the side note, just b/c no one in your family had CF does not mean your child can't have it. I have never heard of CF before my dd was diagnosed, and neither has anyone in my family on both sides. So I would get all the CF testing done thorougly, just to be sure (I hope it is not CF but if it is, it is really important to start treatment as soon as possible)

 

[NancyLKF]

I find it really irritating that a doctor would just sort of push the idea of CF to the side. Your child's symptoms sound like CF (hopefully it's not though). Maggie's poop can be really greasy if she eats too many fats (like the stick of butter she would love to dive into) but usually it's fluffy and light brown - sometimes hard and dark like she's getting constipated. She hasn't had lung issues yet, but she's been treated since she was just a couple of weeks old.
Not having a family history means nothing. We have no family history at all on either side, and I'm sure that is the same story for most people. I didn't even know what it was.
Push for CF testing. Once you know either way you will feel better.

 

[NancyLKF]

I find it really irritating that a doctor would just sort of push the idea of CF to the side. Your child's symptoms sound like CF (hopefully it's not though). Maggie's poop can be really greasy if she eats too many fats (like the stick of butter she would love to dive into) but usually it's fluffy and light brown - sometimes hard and dark like she's getting constipated. She hasn't had lung issues yet, but she's been treated since she was just a couple of weeks old.
Not having a family history means nothing. We have no family history at all on either side, and I'm sure that is the same story for most people. I didn't even know what it was.
Push for CF testing. Once you know either way you will feel better.

 

[NancyLKF]

I find it really irritating that a doctor would just sort of push the idea of CF to the side. Your child's symptoms sound like CF (hopefully it's not though). Maggie's poop can be really greasy if she eats too many fats (like the stick of butter she would love to dive into) but usually it's fluffy and light brown - sometimes hard and dark like she's getting constipated. She hasn't had lung issues yet, but she's been treated since she was just a couple of weeks old.
<br />Not having a family history means nothing. We have no family history at all on either side, and I'm sure that is the same story for most people. I didn't even know what it was.
<br />Push for CF testing. Once you know either way you will feel better.