Sorry this will be so long. I have been reading through the forum for the past few hours and am sitting here having a silent panic attack. CF has never been on our radar or even mentioned to us as something we should be concerned about, so it feels rather shocking.
My daughter is 6 1/2 years and was born on the north shore of Chicago in Lake County. She has had a lot of health challenges but nothing that has been life threatening. She was born full term but came down with a double ear infection by 12 days (because my older daughter had a cold and kept licking her to see if she could make her catch it..ha!). She was dx'd with reflux at 1 month as well as a milk protein allergy. She took Zantac and was on the expensive Nutramagin formula for her first 14 months, when she then seemed to outgrow the allergy. She was sick all the time though. She'd get one cold, get over it, get another cold, and so on. She was dx'd with delayed gastric emptying and put on Reglan for 9 months (scary!). She had chronic ear infections and had tubes by 7 months. Don't think they really did much but she outgrew the ear infections. The colds continued though. She also went from infant reflux to silent reflux, which lasted until she was 5 years. She never could take anything but Zantac - Prevacid made her throw up.
At about 20 months, she had an endoscopy with biopsy to see if they could figure out why she was having reflux, but it didn't show anything. Her reflux was manageable, but it was a roller coaster. Finally saw an allergist around 3 and was put on Zyrtec and her constant colds and viruses came to a halt. She had the medicine adjusted a few times and they added on Nasonex, but for the most part she started doing much better. I have significant allergies and have all my life, so I just assume(d) she inherited mine.
Around 3 we had a hard time potty training her for poop. I have an older daughter who is now 12 who also was very difficult to potty train and did not give in until almost 4, so I didn't think much of it. Just figured I had two feisty girls. Her pediatric GI dx'd her with encopresis at age 4 and put her on Miralax, but Miralax would just give her terrible diarrhea. She saw a child psychologist for 6 months to work with her on potty training but that didn't do much. Finally at age 5 1/2, at my wits end dealing with her constipation, I put her on a gluten free diet and she improved greatly. She had tested negative, both in biopsy and blood testing for celiac twice, but it appears she is somewhat sensitive to gluten. She still only goes every few days and it is very large, but she is never uncomfortable and it does not look like the oily, foamy poop that is described by CF standards.
In November of 2009, we moved to central Kentucky for my husband's job change. The area we live in is one of the worst in the country for allergies and asthma, and within a month of being here, our daughter started getting sick all the time with colds and coughs. Long story short, she was sent to a new allergist here who changed all her meds, diagnosed her with asthma in addition, and started her on immunotherapy. Her scratch testing showed she is allergic to 26 allergens (so far...I am allergic to 40). She had walking pneumonia once during those few months but after being on the new meds she improved a lot. She had a good spring and summer without any issues, but then started 1st grade this fall and bam, went back to lots of colds/coughing.
Last month she had a tonsillectomy/adenoidectomy. Her CT scan was clear for her sinuses and they looked good. Her tonsils were almost touching and she snored like a sailor. She recovered after two weeks and then went back to school, and within a week came down with a cold. To say this was disappointing is an understatement. It went into a cough again and I took her to the pediatrician today and she is on Zithromax and is already sounding better by tonight.
I also took her to her allergist today to see if possibly her allergies need a tweak in medications. Instead the allergist wants to send her for blood testing to check her immune system and a sweat chloride test. The blood test is tomorrow, the sweat chloride test on Jan 3rd. She said she thought it would be very, very rare for her to have either CF or an immune issue because she thinks it would have presented by now, particularly after seeing so many specialists over the last 6 years, but she has to rule it out.
I am freaking out. Of course after reading the forums, I can see that we have reason to be concerned due to her chronic sinus and respiratory issues over the years as well as the constipation. She is not salty tasting, she isn't excessively pruney in the bathtub after a bath, and she is living in the worst area of the country for allergies and asthma. She also has never had failure to thrive. She is tall, thin, but has never dropped below the 50th percentile in either height or weight (she is 46 3/4 inches and 46 1/2 lbs). She also is NEVER tired...believe me, I wish she were, and even when she has a cold/cough, you would never know it by her energetic behavior. She very rarely gets fevers.
To my knowledge, neither myself or my husband is a gene carrier, though I know that doesn't mean much considering there are 1500 known mutations.
I would like to think that something would have shown up by now indicating we needed to be worried...newborn screening, other specialists running tests. This just seems so out of left field considering all the testing she's had done over the years.
I guess I just need a hug. That's all. LOL! I know you can't tell me she does or doesn't have it, I just need to get it all out there and see some responses so I know I'm not alone. My husband thinks I'm insane for worrying. I just need some reassurance that I'm not insane. <img src="i/expressions/face-icon-small-wink.gif" border="0">
My daughter is 6 1/2 years and was born on the north shore of Chicago in Lake County. She has had a lot of health challenges but nothing that has been life threatening. She was born full term but came down with a double ear infection by 12 days (because my older daughter had a cold and kept licking her to see if she could make her catch it..ha!). She was dx'd with reflux at 1 month as well as a milk protein allergy. She took Zantac and was on the expensive Nutramagin formula for her first 14 months, when she then seemed to outgrow the allergy. She was sick all the time though. She'd get one cold, get over it, get another cold, and so on. She was dx'd with delayed gastric emptying and put on Reglan for 9 months (scary!). She had chronic ear infections and had tubes by 7 months. Don't think they really did much but she outgrew the ear infections. The colds continued though. She also went from infant reflux to silent reflux, which lasted until she was 5 years. She never could take anything but Zantac - Prevacid made her throw up.
At about 20 months, she had an endoscopy with biopsy to see if they could figure out why she was having reflux, but it didn't show anything. Her reflux was manageable, but it was a roller coaster. Finally saw an allergist around 3 and was put on Zyrtec and her constant colds and viruses came to a halt. She had the medicine adjusted a few times and they added on Nasonex, but for the most part she started doing much better. I have significant allergies and have all my life, so I just assume(d) she inherited mine.
Around 3 we had a hard time potty training her for poop. I have an older daughter who is now 12 who also was very difficult to potty train and did not give in until almost 4, so I didn't think much of it. Just figured I had two feisty girls. Her pediatric GI dx'd her with encopresis at age 4 and put her on Miralax, but Miralax would just give her terrible diarrhea. She saw a child psychologist for 6 months to work with her on potty training but that didn't do much. Finally at age 5 1/2, at my wits end dealing with her constipation, I put her on a gluten free diet and she improved greatly. She had tested negative, both in biopsy and blood testing for celiac twice, but it appears she is somewhat sensitive to gluten. She still only goes every few days and it is very large, but she is never uncomfortable and it does not look like the oily, foamy poop that is described by CF standards.
In November of 2009, we moved to central Kentucky for my husband's job change. The area we live in is one of the worst in the country for allergies and asthma, and within a month of being here, our daughter started getting sick all the time with colds and coughs. Long story short, she was sent to a new allergist here who changed all her meds, diagnosed her with asthma in addition, and started her on immunotherapy. Her scratch testing showed she is allergic to 26 allergens (so far...I am allergic to 40). She had walking pneumonia once during those few months but after being on the new meds she improved a lot. She had a good spring and summer without any issues, but then started 1st grade this fall and bam, went back to lots of colds/coughing.
Last month she had a tonsillectomy/adenoidectomy. Her CT scan was clear for her sinuses and they looked good. Her tonsils were almost touching and she snored like a sailor. She recovered after two weeks and then went back to school, and within a week came down with a cold. To say this was disappointing is an understatement. It went into a cough again and I took her to the pediatrician today and she is on Zithromax and is already sounding better by tonight.
I also took her to her allergist today to see if possibly her allergies need a tweak in medications. Instead the allergist wants to send her for blood testing to check her immune system and a sweat chloride test. The blood test is tomorrow, the sweat chloride test on Jan 3rd. She said she thought it would be very, very rare for her to have either CF or an immune issue because she thinks it would have presented by now, particularly after seeing so many specialists over the last 6 years, but she has to rule it out.
I am freaking out. Of course after reading the forums, I can see that we have reason to be concerned due to her chronic sinus and respiratory issues over the years as well as the constipation. She is not salty tasting, she isn't excessively pruney in the bathtub after a bath, and she is living in the worst area of the country for allergies and asthma. She also has never had failure to thrive. She is tall, thin, but has never dropped below the 50th percentile in either height or weight (she is 46 3/4 inches and 46 1/2 lbs). She also is NEVER tired...believe me, I wish she were, and even when she has a cold/cough, you would never know it by her energetic behavior. She very rarely gets fevers.
To my knowledge, neither myself or my husband is a gene carrier, though I know that doesn't mean much considering there are 1500 known mutations.
I would like to think that something would have shown up by now indicating we needed to be worried...newborn screening, other specialists running tests. This just seems so out of left field considering all the testing she's had done over the years.
I guess I just need a hug. That's all. LOL! I know you can't tell me she does or doesn't have it, I just need to get it all out there and see some responses so I know I'm not alone. My husband thinks I'm insane for worrying. I just need some reassurance that I'm not insane. <img src="i/expressions/face-icon-small-wink.gif" border="0">