13 yr old son newly dx w/ CF; also dx w/ Crohn's

jeannes · Jan 22, 2011

Hi -
This week my 13 yr old son (Danny) had 3 positive sweat tests (62, 66, 66) and was dx w/ CF by his pulmonologist. A limited genetic screen (32 mutations) came back negative about 1.5 years ago. I look forward to getting a more comprehensive panel done when we get to a CF Center.

Danny has been very sick for the last 2 years with symptoms of constant fatigue, constant abdmonial pain, daily sore throats & body temperate issues, very freqent diarrhea; mouth sores, joint pain, reflux, etc. He was diagnosed with an atypical presentation of Crohn's just over a year ago as inflammation was noted on the biopsies throughout his digestive tract. Crohn's medication either did not help or made him worse. He has been on home instruction for almost 2 years. Just 2 months ago he started to cough up bloody mucus. This led us to a pulmonologist and sweat test.

Danny had asthma since he was a few months old and many episodes of bronchitis and pnuemonia as a small child. His older brother and sister also had asthma and bronchitis often. His older brother had a negative sweat test 14 years ago. I have several cousins that died of CF years ago but I do not know what mutation I have.

As this is still pretty new, I know I have lots of reading to do but I have some questions -

- Does anybody else have IBD? I read that CF patients are 17 times more likely to develop IBD.

- Are dental braces discouraged for CF patients? My son's symptoms started after getting stainless steel braces put on. I knew the metal caused sores in his mouth and believed that the metals were leaching into his digestive tract and poisening him. It was nearly impossible to get doctors from NY to have any comment on metal toxicity. Knowing now that he has CF and more salt in his saliva, it makes sense that more metals do leach out of the braces. Danny's stainless steel braces were removed after 4 months. That helped with his very gray palor and mouth irritations, but the other symptoms remained.

- Any comments on the CF Centers in NYC or Long Island?
Thanks. The information here is wonderful.
(Sorry for such a long intro.)

jeannes · Jan 22, 2011

Hi -
This week my 13 yr old son (Danny) had 3 positive sweat tests (62, 66, 66) and was dx w/ CF by his pulmonologist. A limited genetic screen (32 mutations) came back negative about 1.5 years ago. I look forward to getting a more comprehensive panel done when we get to a CF Center.

Danny has been very sick for the last 2 years with symptoms of constant fatigue, constant abdmonial pain, daily sore throats & body temperate issues, very freqent diarrhea; mouth sores, joint pain, reflux, etc. He was diagnosed with an atypical presentation of Crohn's just over a year ago as inflammation was noted on the biopsies throughout his digestive tract. Crohn's medication either did not help or made him worse. He has been on home instruction for almost 2 years. Just 2 months ago he started to cough up bloody mucus. This led us to a pulmonologist and sweat test.

Danny had asthma since he was a few months old and many episodes of bronchitis and pnuemonia as a small child. His older brother and sister also had asthma and bronchitis often. His older brother had a negative sweat test 14 years ago. I have several cousins that died of CF years ago but I do not know what mutation I have.

As this is still pretty new, I know I have lots of reading to do but I have some questions -

- Does anybody else have IBD? I read that CF patients are 17 times more likely to develop IBD.

- Are dental braces discouraged for CF patients? My son's symptoms started after getting stainless steel braces put on. I knew the metal caused sores in his mouth and believed that the metals were leaching into his digestive tract and poisening him. It was nearly impossible to get doctors from NY to have any comment on metal toxicity. Knowing now that he has CF and more salt in his saliva, it makes sense that more metals do leach out of the braces. Danny's stainless steel braces were removed after 4 months. That helped with his very gray palor and mouth irritations, but the other symptoms remained.

- Any comments on the CF Centers in NYC or Long Island?
Thanks. The information here is wonderful.
(Sorry for such a long intro.)

jeannes · Jan 22, 2011

Hi -
 This week my 13 yr old son (Danny) had 3 positive sweat tests (62, 66, 66) and was dx w/ CF by his pulmonologist. A limited genetic screen (32 mutations) came back negative about 1.5 years ago. I look forward to getting a more comprehensive panel done when we get to a CF Center.
 
 Danny has been very sick for the last 2 years with symptoms of constant fatigue, constant abdmonial pain, daily sore throats & body temperate issues, very freqent diarrhea; mouth sores, joint pain, reflux, etc. He was diagnosed with an atypical presentation of Crohn's just over a year ago as inflammation was noted on the biopsies throughout his digestive tract. Crohn's medication either did not help or made him worse. He has been on home instruction for almost 2 years. Just 2 months ago he started to cough up bloody mucus. This led us to a pulmonologist and sweat test.
 
 Danny had asthma since he was a few months old and many episodes of bronchitis and pnuemonia as a small child. His older brother and sister also had asthma and bronchitis often. His older brother had a negative sweat test 14 years ago. I have several cousins that died of CF years ago but I do not know what mutation I have.
 
 As this is still pretty new, I know I have lots of reading to do but I have some questions -
 
 - Does anybody else have IBD? I read that CF patients are 17 times more likely to develop IBD.
 
 - Are dental braces discouraged for CF patients? My son's symptoms started after getting stainless steel braces put on. I knew the metal caused sores in his mouth and believed that the metals were leaching into his digestive tract and poisening him. It was nearly impossible to get doctors from NY to have any comment on metal toxicity. Knowing now that he has CF and more salt in his saliva, it makes sense that more metals do leach out of the braces. Danny's stainless steel braces were removed after 4 months. That helped with his very gray palor and mouth irritations, but the other symptoms remained.
 
 - Any comments on the CF Centers in NYC or Long Island?
 Thanks. The information here is wonderful.
 (Sorry for such a long intro.)

jeannes · May 10, 2011

i wanted to update in case this thread does comes up in a search. After full gene sequencing, no CFTR mutation were found so my son's dx of CF was reversed. His Crohn's dx is still in question .... so we are not sure what he has.

jeannes · May 10, 2011

i wanted to update in case this thread does comes up in a search. After full gene sequencing, no CFTR mutation were found so my son's dx of CF was reversed. His Crohn's dx is still in question .... so we are not sure what he has.

jeannes · May 10, 2011

i wanted to update in case this thread does comes up in a search. After full gene sequencing, no CFTR mutation were found so my son's dx of CF was reversed. His Crohn's dx is still in question .... so we are not sure what he has.

stringbean · May 10, 2011

My daughter has all the symptoms you've mentioned [constant fatigue, constant abdmonial pain, daily sore throats & body temperate issues, very freqent diarrhea; mouth sores, joint pain, reflux, etc.] She had terrible rashes on her bum that continued well beyond the diaper years. Also, the glands in her neck are constantly swollen, the right side more so than the left. I've also been wondering what could explain it because I don't think (but don't know) if those symptoms have anything to do with CF.
She had two borderline sweat tests, has one mutation (Ambry Amplified) and severe PI. She has a diagnosis of CF related metabolic something or other -- I don't know what the official name is, but the doctors do have her on the CF spectrum in any case. She was diagnosed with PI two years ago and started taking Creon but has never gained any weight at all so her doctor kept testing for any other conditions. She had an endoscopy, but looked all pink and healthy so he didn't suspect celiac, crohn's or any IBS.
A few months ago she was diagnosed with Fructose Malabsorption and we completely overhauled her diet. She can't eat fruit, most vegetables, flour, brown rice, on and on and on. Her rashes and mouth sores have gone away, the burping and passing gas is gone, the diarrhea has improved, there are no more complaints of joint aches, and the abdominial pain (that she didn't even realize she had until it went away) is gone. All of that, including the rashes, reappear whenever she strays from that draconian diet. And despite removing about 80% of the foods she used to eat, she's gained over four pounds since January (almost 10% of her body weight.)
However, her swollen glands, sore throat and constant exhaustion are still an every single day occurance. Her pulmonologist is thinking seasonal allergies but she has been skin tested for that, so we may end up expanding the list of allergens and trying the test again.
I AM NOT TRYING TO DIAGNOSIS YOUR SON -- but this FM thing was such a fluke and so few doctors are familiar with it and it has made such an incredible difference in my daughter's life. Her mood swings are gone, her grades are improving, her behavior has improved, her anxieties are disappearing. Your son's symptoms sounded so similar I just wanted to mention it (the link thing doesn't seem to be working for me, so if you want to read about FM, here is an overview [http://en.wikipedia.org/wiki/Fructose_malabsorption]
I'm glad to hear that Danny does not have CF, but I know how frustrating it is to not have an answer. PM me if you have any questions. Good luck in finding an answer!

stringbean · May 10, 2011

My daughter has all the symptoms you've mentioned [constant fatigue, constant abdmonial pain, daily sore throats & body temperate issues, very freqent diarrhea; mouth sores, joint pain, reflux, etc.] She had terrible rashes on her bum that continued well beyond the diaper years. Also, the glands in her neck are constantly swollen, the right side more so than the left. I've also been wondering what could explain it because I don't think (but don't know) if those symptoms have anything to do with CF.
She had two borderline sweat tests, has one mutation (Ambry Amplified) and severe PI. She has a diagnosis of CF related metabolic something or other -- I don't know what the official name is, but the doctors do have her on the CF spectrum in any case. She was diagnosed with PI two years ago and started taking Creon but has never gained any weight at all so her doctor kept testing for any other conditions. She had an endoscopy, but looked all pink and healthy so he didn't suspect celiac, crohn's or any IBS.
A few months ago she was diagnosed with Fructose Malabsorption and we completely overhauled her diet. She can't eat fruit, most vegetables, flour, brown rice, on and on and on. Her rashes and mouth sores have gone away, the burping and passing gas is gone, the diarrhea has improved, there are no more complaints of joint aches, and the abdominial pain (that she didn't even realize she had until it went away) is gone. All of that, including the rashes, reappear whenever she strays from that draconian diet. And despite removing about 80% of the foods she used to eat, she's gainedover four pounds sinceJanuary (almost 10% of her body weight.)
However, her swollen glands, sore throat andconstant exhaustion are still an every single day occurance.Her pulmonologist is thinking seasonal allergies but she has been skin tested for that, so we may end up expanding the list of allergens and trying the test again.
I AM NOT TRYING TO DIAGNOSIS YOUR SON -- but this FM thing was such a fluke and so few doctors are familiar with it and it has made such an incredible difference inmy daughter'slife. Her mood swings are gone, her grades are improving, her behavior has improved, her anxieties are disappearing. Your son's symptoms sounded so similar I just wanted to mention it (the link thing doesn't seem to be working for me, so if you want to read about FM, here is an overview [http://en.wikipedia.org/wiki/Fructose_malabsorption]
I'm glad to hear that Danny does not have CF, but I know how frustrating it is to not have an answer. PM me if you have any questions. Good luck in finding an answer!

stringbean · May 10, 2011

My daughter has all the symptoms you've mentioned [constant fatigue, constant abdmonial pain, daily sore throats & body temperate issues, very freqent diarrhea; mouth sores, joint pain, reflux, etc.] She had terrible rashes on her bum that continued well beyond the diaper years. Also, the glands in her neck are constantly swollen, the right side more so than the left. I've also been wondering what could explain it because I don't think (but don't know) if those symptoms have anything to do with CF.
She had two borderline sweat tests, has one mutation (Ambry Amplified) and severe PI. She has a diagnosis of CF related metabolic something or other -- I don't know what the official name is, but the doctors do have her on the CF spectrum in any case. She was diagnosed with PI two years ago and started taking Creon but has never gained any weight at all so her doctor kept testing for any other conditions. She had an endoscopy, but looked all pink and healthy so he didn't suspect celiac, crohn's or any IBS.
A few months ago she was diagnosed with Fructose Malabsorption and we completely overhauled her diet. She can't eat fruit, most vegetables, flour, brown rice, on and on and on. Her rashes and mouth sores have gone away, the burping and passing gas is gone, the diarrhea has improved, there are no more complaints of joint aches, and the abdominial pain (that she didn't even realize she had until it went away) is gone. All of that, including the rashes, reappear whenever she strays from that draconian diet. And despite removing about 80% of the foods she used to eat, she's gainedover four pounds sinceJanuary (almost 10% of her body weight.)
However, her swollen glands, sore throat andconstant exhaustion are still an every single day occurance.Her pulmonologist is thinking seasonal allergies but she has been skin tested for that, so we may end up expanding the list of allergens and trying the test again.
I AM NOT TRYING TO DIAGNOSIS YOUR SON -- but this FM thing was such a fluke and so few doctors are familiar with it and it has made such an incredible difference inmy daughter'slife. Her mood swings are gone, her grades are improving, her behavior has improved, her anxieties are disappearing. Your son's symptoms sounded so similar I just wanted to mention it (the link thing doesn't seem to be working for me, so if you want to read about FM, here is an overview [http://en.wikipedia.org/wiki/Fructose_malabsorption]
I'm glad to hear that Danny does not have CF, but I know how frustrating it is to not have an answer. PM me if you have any questions. Good luck in finding an answer!

13 yr old son newly dx w/ CF; also dx w/ Crohn's

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