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susied
05-15-2017, 07:42 PM
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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kenna2
05-15-2017, 08:37 PM
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!

susied
05-15-2017, 09:26 PM
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.

Gammaw
05-17-2017, 05:40 PM
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

AshleyOlvey
05-18-2017, 03:22 PM
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!

susied
05-22-2017, 11:30 AM
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!

Jpmassman
05-22-2017, 09:36 PM
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.

Gammaw
05-22-2017, 09:49 PM
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!

susied
05-24-2017, 03:45 PM
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!!

Gammaw
05-24-2017, 09:18 PM
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.

susied
05-24-2017, 10:04 PM
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.


Thank you! I appreciate your helpful information in regards to polyps!

viviana_bg
10-27-2018, 10:00 AM
Hi everyone,
I have a 8 month infant being diagnosed with CF two months ago.
We live in South East Europe (a small country - Bulgaria) where CF centers do not exist and we are supposed to visit traditional hospitals and speciliasts. However, this was just for information
I have e deep concern regarding my little one. Two weeks ago she started having more secretions from the nose. At first, there were not thick and I could easily cope with them using Saline 0.9 %. Now things are getting worse - the secretions cause serios difficulty feeding my baby. She vomits 1-2 times a day - a large amount of thick secretion is mixed with food she has taken (breastfed milk or solid food).
I am almost desperate now, because we are underweight, had 2 surgeries at birth due to meconium ileus, diagnosed with CF and now these thick secretions which make feeding a real disaster.

Any advice will be appreciated.
Greetings from Bulgaria

Ratatosk
10-29-2018, 08:20 AM
Does it seem as if she has a sinus infection? DS always had thick mucus in his nose and we'd have to use saline drops and remove the secretions with a bulb syringe. Would usually do this before bed, so he could sleep better. Sometimes giving him a bath before bed and when he got up in the morning would help loosen things up as well. He got a couple ear and sinus infections early on and his doctor prescribed antibiotics when he seemed to feel poorly, decreased eating, slept more.

Gammaw
10-29-2018, 08:33 AM
She may well have nasal polyps and a sinus infection which tends to occur when polyps are an issue. Have you seen and ENT (Ear Nose and Throat) doc? She may need surgery to remove the polyps or otherwise clear out her sinuses. In the meantime, we occasionally find the need for Mucinex which is designed specifically to thin secretions and works well for us. You need to check with your doc to see if it is appropriate for your child’s age and condition but it may help a great deal until you see an ENT.

trghpu1994
11-02-2018, 12:04 PM
Hi everyone,
I have a 8 month infant being diagnosed with CF two months ago.
We live in South East Europe (a small country - Bulgaria) where CF centers do not exist and we are supposed to visit traditional hospitals and speciliasts. However, this was just for information
I have e deep concern regarding my little one. Two weeks ago she started having more secretions from the nose. At first, there were not thick and I could easily cope with them using Saline 0.9 %. Now things are getting worse - the secretions cause serios difficulty feeding my baby. She vomits 1-2 times a day - a large amount of thick secretion is mixed with food she has taken (breastfed milk or solid food).
I am almost desperate now, because we are underweight, had 2 surgeries at birth due to meconium ileus, diagnosed with CF and now these thick secretions which make feeding a real disaster.

Any advice will be appreciated.
Greetings from Bulgaria.

Hi, we adopted a teen from BG with CF 5 years ago. We love Bulgaria. There is a CF center (or used to be) in Sofia. My daughter had occasional dr visits there at the clinic. I know there is a Bulgarian CF page on Facebook as well.
https://lifewithcf.org/?v=dccbe2e74685