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Thread: Allergies and Nasal Polyps 9 year old daughter

  1. #1
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    Allergies and Nasal Polyps 9 year old daughter

    Hello,
    My daughter is 9 years old. When she was born she experienced "respiratory distress" and stayed in the NICU for three days until her breathing normalized. She had a very healthy toddlerhood through age 7...when she started having terrible year round allergies (not food).

    She has been on every allergy medication and nasal spray. Nothing has worked for her. Our allergist sent her to an ENT who examined her and was VERY surprised to see large nasal polyps which were moderate to severe in size. He recommended we get a sweat test for CF b/c polyps are extremely rare in children under the age of 10 (unless you are a child with CF). She snores, is constantly dizzy, complains of headaches, she can't breathe, breathes out of her mouth, etc. Her stools are very dense and look like a bunch of small balls clumped together. Antibiotics don't help her sinus infections. Recently, she was put on an inhaler for wheezing in her right lung. Any thoughts are appreciated!
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  2. #2
    I always had phantom symptoms that my parents thought were allergies. I was tested for CF at age 7 by recommendation of an allergist nurse. CF sinuses are very different from regular ones. It always looks like we have a sinus infection when we don't. Allergy medication still doesn't really help me much to this day. I know polyps are very common for CF patients and many have had them removed or continue to have them removed. Some have had success with this and their breathing has improved. I had sinus surgery done this past December and I've noticed an improvement. Please keep us updated with her sweat test results and what not so we can help you! Best of luck!

  3. #3
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    Thank you! Too be honest, I originally thought...NO WAY could CF be a possibility but her nasal polyps are what has me the most concerned. Did you find that your sweat tasted very salty or left a white film on you? I have not noticed this with my daughter so I am wondering if most people with CFs notice this.
    Thank you! I will keep you all posted. She does next Tuesday.

  4. #4
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    Nasal polyps are very common in kids with CF and can be even more troublesome than respiratory infections in those kids affected. My son started having polyps and removal surgeries at 6. He's 12 now and has had 5 sinus surgeries so far, which have all been extremely helpful but the polyps can reoccur in as little as a couple of months or not at all and anything in between. The best combo we have found is using Simply Saline in the HYPOTONIC formula - not the isotonic. It says Severe on the label as I recall but you can check the ingredient list. Hypotonic has a higher saline content. Many CFErs use nasal rinses instead but frankly my son doesn't tolerate them well, so we take a less extreme approach to cleaning out his sinuses. You can use Simply Saline several times a day. Then add Rhinocort or another nasal steroid (by RX so ask your ENT.) When things get bad we add Mucinex - the idea being to decrease the thickness of the secretions and get things flowing.
    If your daughter is diagnosed with CF, ask to see an ENT in the same facility as the CF group - they will likely have more experience with CF sinuses. Let us know how the testing comes out!
    As for the salty white residue on the face - my son didn't manifest that until he was 10 and it was in extreme heat and exercise. He plays a lot of sports and sweats a lot but rarely shows the white film despite two Class II genes. It's still not common at all for him and isn't "required" for a CF diagnosis.
    Blessings
    Last edited by Gammaw; 05-17-2017 at 05:44 PM.

  5. #5
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    Sinus help

    Quote Originally Posted by susied View Post
    Hello,
    My daughter is 9 years old. When she was born she experienced "respiratory distress" and stayed in the NICU for three days until her breathing normalized. She had a very healthy toddlerhood through age 7...when she started having terrible year round allergies (not food).

    She has been on every allergy medication and nasal spray. Nothing has worked for her. Our allergist sent her to an ENT who examined her and was VERY surprised to see large nasal polyps which were moderate to severe in size. He recommended we get a sweat test for CF b/c polyps are extremely rare in children under the age of 10 (unless you are a child with CF). She snores, is constantly dizzy, complains of headaches, she can't breathe, breathes out of her mouth, etc. Her stools are very dense and look like a bunch of small balls clumped together. Antibiotics don't help her sinus infections. Recently, she was put on an inhaler for wheezing in her right lung. Any thoughts are appreciated!
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    Try using the Sinusgator (battery operated "Netti pot." My 5 yo CFer (with polyps) had trouble using the traditional pot, but does much, much better with the sinusagator (by Neilmed). She (as well as me- no CF) get sinus infections every 2-4 months & we have been problem free since using it!
    Ashley, mommy of beautiful baby girl, Boston Elli who has CF (DF508 & R553X). Boston was diagnosed with the 48hr newborn metabolic screening & sweat test.

  6. #6
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    Thank you so much for your suggestions and sharing of information. We go to Hopkins tomorrow for the sweat test. I will let you know once we get the results back. Blessings to you too!

  7. #7
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    Good luck tomorrow. Whether cf or not some good suggestions from others here. I'll just add a thought. Keeping sinuses as clean as possible is obviously a priority to reduce conditions favorable to polyp growth. My son (16 now) had recurring polyp growth and surgeries when he was 9-11 years old but not since. Regular with nasal rinse 2x a day. Find what you daughter can tolerate and just stick with it. My son also does nebulized budesonide after his rinse. A lot to the routine but he's a champ and rarely complains. His ENT at Children's Boston chalks the success to diligence in the routine...and maybe a bit of luck along the way. You are lucky to have Hopkins, they too, have excellent physicians who can steer you in the right direction, whichever that may be.

  8. #8
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    Yes - good luck! And do keep us posted. You're headed to a good facility and I'm sure lots of our members - myself included - would love to hear how they address the polyp issue!

  9. #9
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    Good Afternoon! Her results were 53 for the sweat test. Her ENT- who ordered the test- was not in the office today. He is calling me tomorrow to go over the results. I have read a 53 is negative/ borderline. Any thoughts? Much appreciated! Can't wait for the ENT to call!!

  10. #10
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    Hi susied! Your results are not considered "negative" unfortunately. They are considered "borderline/indeterminate". She may have CF and she may not. 60 is positive. Under 40 is negative. You're in that grey area from 40 to 59. How frustrating. I suspect they will want to repeat the testing, which is generally the standard even when the results are positive. Your results need to be assessed by a CF Center with an full evaluation of her other symptoms. Our forum is replete with CFers who have had testing results from both sweat testing and genetic testing that were borderline. There are many genetic configurations for CF that do not cause extreme symptoms but ones that are no less troublesome yet treatable in some way. You are doing just what you need to be doing. You've got this. It will be interesting to hear what your ENT says. We will all be waiting to hear what the ENT suggests. Relax.
    Blessings.

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