13 year old possible CF?

P

Poptart

New member
First I have to say that you all are some of the kindest and most supportive group of people I have ever witnessed. I have been lurking for a few weeks while we are waiting for gene test to come back. I would love your honest thoughts on my son's situation. I keep wavering between denial and being convinced he has CF. If it is not CF then we are dumbfounded as to what the magic connection is to his illnesses. I would love to hear from all of you who have gone before us is this process as to your thoughts. Does anyone know of any other possibility it could be besides CF? I think what throws everyone off is he is very physically active and involved in competative sports. He just keep pushing through. Here is his story. Sorry so long but I really value your thoughts and experiences.

*Preemie born 6 wks early at 4 lbs
*Began throwing up anything he ate 2 weeks till 5 years
*Vomited up to 20 times a day until we added heavy acid meds
*Diarrhea to super colon 2 months to current
*Severe food and airborne allergies from 2 months
* Reoccurring strep throat every month till 20 months when we removed tonsils and adenoids
3 bouts of pneumonia before 5 years
*Diagnosed with severe GERD 2years to present
*2 sinus surgeries with polyps one at 7 yrs and 11 yrs
* Chronic sinus infections still
*Tested for Pneumonia 13 titers and deficient in 12 of them
*Diagnosed with IBD this year
*Muscle pain
* Fatigue
* Almost 5'10 and 120lbs on a good day
* Get full very quickly (kids cheese burger and a few fries)
*Lots of stomach pain
*Mis-diagnosed with Celiac from age 5-9yrs
*2 negative sweat tests one at 38 (7 yrs old) and one at 16 (13 yrs old)
*CT of sinus this week show moderate thickening of the mucosal lining.
*basic 1 day fecal test was in the 500's so normal
*Currently taking 80mg Nexium, Qvar, Flonase, 10 mg. Nortriptoline for stomach pain, Zyrtec,4 days of prednisone for current sinus infection, 2nd round of Augmentin.

Thoughts?
 
P

Poptart

New member
First I have to say that you all are some of the kindest and most supportive group of people I have ever witnessed. I have been lurking for a few weeks while we are waiting for gene test to come back. I would love your honest thoughts on my son's situation. I keep wavering between denial and being convinced he has CF. If it is not CF then we are dumbfounded as to what the magic connection is to his illnesses. I would love to hear from all of you who have gone before us is this process as to your thoughts. Does anyone know of any other possibility it could be besides CF? I think what throws everyone off is he is very physically active and involved in competative sports. He just keep pushing through. Here is his story. Sorry so long but I really value your thoughts and experiences.

*Preemie born 6 wks early at 4 lbs
*Began throwing up anything he ate 2 weeks till 5 years
*Vomited up to 20 times a day until we added heavy acid meds
*Diarrhea to super colon 2 months to current
*Severe food and airborne allergies from 2 months
* Reoccurring strep throat every month till 20 months when we removed tonsils and adenoids
3 bouts of pneumonia before 5 years
*Diagnosed with severe GERD 2years to present
*2 sinus surgeries with polyps one at 7 yrs and 11 yrs
* Chronic sinus infections still
*Tested for Pneumonia 13 titers and deficient in 12 of them
*Diagnosed with IBD this year
*Muscle pain
* Fatigue
* Almost 5'10 and 120lbs on a good day
* Get full very quickly (kids cheese burger and a few fries)
*Lots of stomach pain
*Mis-diagnosed with Celiac from age 5-9yrs
*2 negative sweat tests one at 38 (7 yrs old) and one at 16 (13 yrs old)
*CT of sinus this week show moderate thickening of the mucosal lining.
*basic 1 day fecal test was in the 500's so normal
*Currently taking 80mg Nexium, Qvar, Flonase, 10 mg. Nortriptoline for stomach pain, Zyrtec,4 days of prednisone for current sinus infection, 2nd round of Augmentin.

Thoughts?
 
P

Poptart

New member
First I have to say that you all are some of the kindest and most supportive group of people I have ever witnessed. I have been lurking for a few weeks while we are waiting for gene test to come back. I would love your honest thoughts on my son's situation. I keep wavering between denial and being convinced he has CF. If it is not CF then we are dumbfounded as to what the magic connection is to his illnesses. I would love to hear from all of you who have gone before us is this process as to your thoughts. Does anyone know of any other possibility it could be besides CF? I think what throws everyone off is he is very physically active and involved in competative sports. He just keep pushing through. Here is his story. Sorry so long but I really value your thoughts and experiences.
<br />
<br />*Preemie born 6 wks early at 4 lbs
<br />*Began throwing up anything he ate 2 weeks till 5 years
<br />*Vomited up to 20 times a day until we added heavy acid meds
<br />*Diarrhea to super colon 2 months to current
<br />*Severe food and airborne allergies from 2 months
<br />* Reoccurring strep throat every month till 20 months when we removed tonsils and adenoids
<br />3 bouts of pneumonia before 5 years
<br />*Diagnosed with severe GERD 2years to present
<br />*2 sinus surgeries with polyps one at 7 yrs and 11 yrs
<br />* Chronic sinus infections still
<br />*Tested for Pneumonia 13 titers and deficient in 12 of them
<br />*Diagnosed with IBD this year
<br />*Muscle pain
<br />* Fatigue
<br />* Almost 5'10 and 120lbs on a good day
<br />* Get full very quickly (kids cheese burger and a few fries)
<br />*Lots of stomach pain
<br />*Mis-diagnosed with Celiac from age 5-9yrs
<br />*2 negative sweat tests one at 38 (7 yrs old) and one at 16 (13 yrs old)
<br />*CT of sinus this week show moderate thickening of the mucosal lining.
<br />*basic 1 day fecal test was in the 500's so normal
<br />*Currently taking 80mg Nexium, Qvar, Flonase, 10 mg. Nortriptoline for stomach pain, Zyrtec,4 days of prednisone for current sinus infection, 2nd round of Augmentin.
<br />
<br />Thoughts?
 
J

jmom

New member
You are right this is a great group of parents. I found much support a while back when we were waiting for our genetic test for my daughter. Her test was negative, but I visit this forum once in a great while because someone here is helping me with our current diagnosis struggle. I caught your message here and couldn't help but reply. The parents here will be much more helpful than I can be, but I just have one thing to pop in to your head IF, and only if, your test comes back negative. Look into shwachman diamond syndrome. After ruling out CF, we have found that both of my children fit the profile for shwachman (SDS). Your list of symptoms hit home with a number my children's symptoms. My daughter has had half a dozen episodes of GI bleeding and IBD has been in question. My son is 5'10 and 120 pounds also! Yet he also physically active...plays high school basketball. We biopsied for celiacs several times for my daughter. Fecal elastase for daughter was in the 500's, yet she had a positive fat malabsorption test. SDS requires three components to be diagnosable: pancreatic insufficiency/fat malabsorption, low white blood cell counts, and skeletal anomaly. My kids have all three. Let me know if you have any questions. I sincerely wish you the best as you look for answers.
 
J

jmom

New member
You are right this is a great group of parents. I found much support a while back when we were waiting for our genetic test for my daughter. Her test was negative, but I visit this forum once in a great while because someone here is helping me with our current diagnosis struggle. I caught your message here and couldn't help but reply. The parents here will be much more helpful than I can be, but I just have one thing to pop in to your head IF, and only if, your test comes back negative. Look into shwachman diamond syndrome. After ruling out CF, we have found that both of my children fit the profile for shwachman (SDS). Your list of symptoms hit home with a number my children's symptoms. My daughter has had half a dozen episodes of GI bleeding and IBD has been in question. My son is 5'10 and 120 pounds also! Yet he also physically active...plays high school basketball. We biopsied for celiacs several times for my daughter. Fecal elastase for daughter was in the 500's, yet she had a positive fat malabsorption test. SDS requires three components to be diagnosable: pancreatic insufficiency/fat malabsorption, low white blood cell counts, and skeletal anomaly. My kids have all three. Let me know if you have any questions. I sincerely wish you the best as you look for answers.
 
J

jmom

New member
You are right this is a great group of parents. I found much support a while back when we were waiting for our genetic test for my daughter. Her test was negative, but I visit this forum once in a great while because someone here is helping me with our current diagnosis struggle. I caught your message here and couldn't help but reply. The parents here will be much more helpful than I can be, but I just have one thing to pop in to your head IF, and only if, your test comes back negative. Look into shwachman diamond syndrome. After ruling out CF, we have found that both of my children fit the profile for shwachman (SDS). Your list of symptoms hit home with a number my children's symptoms. My daughter has had half a dozen episodes of GI bleeding and IBD has been in question. My son is 5'10 and 120 pounds also! Yet he also physically active...plays high school basketball. We biopsied for celiacs several times for my daughter. Fecal elastase for daughter was in the 500's, yet she had a positive fat malabsorption test. SDS requires three components to be diagnosable: pancreatic insufficiency/fat malabsorption, low white blood cell counts, and skeletal anomaly. My kids have all three. Let me know if you have any questions. I sincerely wish you the best as you look for answers.
 
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