Sinus question

[ByGrace]

My 11-year-old-DS was diagnosed with CRMS about 4 years ago with chronic constipation being his only symptom, or so I thought. I can't remember a day in the last several years that he has not had a runny nose, congestion, and sneezing. My husband and daughter (both w/o CF) have allergies causing those same symptoms and my son's Dr. and I assumed it was the same for him and put him on allergy meds. He's been on 3 different meds over the past 3 years and none of them have helped at all. I never associated these symptoms with CF before because he does not cough and his mucous is clear and does not look thick. This has always been more of an annoyance for him than any kind of problem. But now that the allergy meds have been ineffective I'm starting to wonder if this is related to CF. Is it common in CF to have a persistent runny nose without infection or thick mucous? Because of DS mutations (DF508 & 5T/12TG) and his CRMS dx his Dr. is always hesitant to say any of his symptoms are related to CF, but I hate to dismiss things so quickly.

 

[Ratatosk]

Some people wcf tend to have more sinus issues -- polyps, infections.... One of the local cf kids has had several sinus surgeries and every time I see him, he's got a snotty, runny nose.

DS' mucus is so thick that unless he has a cold, his nose never runs. When he was a baby I'd use saline spray and the dreaded booger sucker to clear his nose so he could eat. He was chronically stuffed up and at age 4 we convinced him to start doing sinus rinses. Couldn't believe the amount of stuff that came out of his nose. A few years ago, he started having issues where he couldn't breath out of his nose, would snore, mouth breathe.... Sinus rinses didn't help, so we took him to an ENT who specialized in CF care. I was concerned with polyps. They ran a scope down his nose and his nasal passages were inflamed, sinus CT showed typical CF sinus issues. Prescribed a nasal steroid --- nasonex or Flonase and within days he could breathe again. IMO, as for a referral to an ENT.

 

[vbs420]

Sadly, when I was a child and my nose ran all the time, constantly dripping buckets of clear mucus which I would then snort and swallow, no one EVER thought to relate this to CF.

Among other issues, I have been plagued with sinus problems my entire life.

Had healtcare known in the 70's that my sinus secretions were directly due to CF, I would have likely avoided both my sinus surgeries.

 

[vbs420]

The "sad" part was that no one thought it was the CF.

 

[believingjesus]

My son had always had sinus infections along with ear infections since he was a baby. When he was about 8 years old he had "windows" put in his nose from the ENT doctor. He also had those replaced when he was a teenager with more "windows". They cleaned out his sinuses of the thick mucous and put those in his nose. He used to do sinus washes but hated them and won't do them to this day. He does take Claritin D daily for several years now.

 

[imported_Momto2]

Hi. I always had a runny nose as a kid, as did many others with CF that I knew. In my case, it progressed into at least 7 sinus surgeries (windows, polyps removed many times). Maybe its time to try a new approach to his allergies? When you say congestion, do you mean sinus, chest, or both?

 

[ByGrace]

He's actually never been tested for allergies; we just assumed. When I say congestion I'm referring to his sinuses. He always feels like his nose is stuffy, although he can still breathe through his nose. When you look in his nose, one side looks very swollen, so I'm assuming that's what makes him feel stuffy. We see his CF doctor in a few months and I'm hoping she'll take this seriously enough to look into it.

 

[Ratatosk]

I'd get a referral to an ENT who specializes in cf care. Ds' inflamed swollen nasal passages were much better after he was put on nasal steroids. And see if sinus rinses or saline spray helps in the meantime

 

[ByGrace]

He was on Flonase for over a year with no improvement. I'll have to try the rinses and spray though. I'll do a search for an ENT/CF doctor close by and see if I can get a referral.

 

[Beccamom]

I have similar but not the exact CF genes and my sinuses my biggest problem. My CF pulminogist feeIs it is important to keep sinuses cleaned out to avoid bacteria starting in the upper airway and ending in the lungs. Also my sinuses get so swollen that my nose does not drain. I am trying steroids in the sinus rinse now. I have no IGE mediated allergies and 4 years of allergy shots did nothing. I only get green snot from my nose after steroids take care of some sinus swelling then the flood gates open. Also my daughter CF carrier had a sinus CT to help figure out a rapid lung function decline and her sinuses were inpacted with infection and polyps and we never knew she ever had a sinus infection.

 

[ByGrace]

Very interesting Beccamom. I hadn't considered that there could be an infection with no symptoms. That does seem to fit the way DS health goes. He had an ear infection as a baby and never cried or had a fever or anything. We only knew after his eardrum burst and we saw the drainage. Now he suffers from severe constipation every day but says he's never in any pain. If he had a sinus infection we might just never know until it got really bad.

 

[LittleLab4CF]

Your son's symptoms are a match for what used to be diagnosed as a symptomatic carrier. CRMS diagnosis is more accurate but in both diagnoses, the gut and head are always out of whack. Persistent ear, nose and throat infections go hand in hand with constipative IBS, gastritis and GERD. Usually the lungs get a break and that makes sense for a CRMS diagnosis.

My ENT issues were also just annoying excepting my ear infections. Unbeknown to me or my parents, constant sinus infections and such deformed and ate away at my sinuses and perforated my septum. The family doctor periodically dilated and drained my sinuses in an effective but obsolete process.

There wasn't a pediatric ENT around when I was a kid and the first adult ENT suggested a complete sinus reconstruction. It made a world of difference but the news took a year to absorb. Small duct disease is practically universal in CF/CRMS. His days of constipation suggests that food, enzymes and bile aren't in sync and two conditions are responsible. Thickened fluids like bile and the enzyme cocktail expressed from the pancreas and small ducts that it pushes through, cause a world of challenging and painful GI problems.

Small duct disease ,SDD, implies that the ducts are undersized but there's more to it. The duct walls are sticky and tend to leak. Eustacian tubes, tear ducts, sinuses, turbinates are mucus membranes and interconnecting ducts. Every gland and the endocrine system dispense hormones or other agents in a form of mucus.

Assuming for the moment that DS has abnormally thick, viscus mucus and SDD treating his upper respiratory system as if for CF. To satisfy myself, I'd probably ask my kid's doctor to check for SDD and evaluate his sinus drainage. See a pediatric ENT if you're still concerned.

My wild guess, it's related to his CFTR mutation and 5T polymorphism,

LL

 

[Gammaw]

ByGrace, as a Mom of a CFer with chronic polyps and recurrent surgeries, Ive no doubt you've received some great advice in these posts. There was a time that docs didn't think carriers were symptomatic. Frankly I've come to believe that was wishful thinking - and pretty shallow thinking at best. These forums are replete with carriers having problems similar to CFers and running the full spectrum from belly issues to sinus issues and lung issues. You name it. In our family I can probably point out the carriers for you without any testing needed! The Dad with "bad sinuses" and acid reflux. The Aunt or Uncle with chronic digestive issues who eats TUMS for breakfast. The Grandmother with COPD. Now they seem to call it CRMS. And so it goes.... And with the recurrent expansion of genes getting thrown into the CF category, even unidentified carriers are turning into full blown CFers daily. I'm not suggesting your child has full blown CF. I'm suggesting, as you know, that he can be symptomatic without full blown CF status. And sometimes everyone seems to focus more on a diagnosis than on treating the probem. We seem to have to find a label first. Silly. So . . . It sometimes takes great persistence to get effective medical care. Docs are learning too. You know there is something causing a problem with his sinuses. And you know what's been tried and failed. I would suggest, as others, that you find a pediatric ENT who is familiar with CF and let them run with it. Insist upon a referral . . . Gently if you can, forcefully if you cannot. Or if your insurance allows you, simply make an appointment with one. Perhaps a CT scan of the sinuses and protocols that are designed for the CF sinus will follow and uncover the cause and treatment. I suspect you will find much greater relief than you have to date. I'm looking forward to hearing how it goes!

 

[imported_Momto2]

Gammaw, I hear what you're saying about the carriers and symptoms!!!!! My mom is prone to asthma and bronchitits and has had GI problems off and on for years. My dad has health issues too. You can trace this stuff back generations........ My brother is healthy as a horse, but my sister (who refuses to be tested) has always had weak digestion and a history of asthma and bronchitis. Guess who I think is the carrier?

 

[Gammaw]

Imported, wouldn't it be fun to find a doc who says carriers are symptomless, and get them to make a heavy bet with us! I'll point out the carriers in my family and you point out the carriers in yours . . . . Follow it with a little bit of testing and we'll take the doc to the cleaners!

 

[JENNYC]

I couldn't agree more Gammaw!

 

[JustaCFmom]

My son had a constant runny nose for YEARS. When he got diagnosed at 8, the doctor said he had nasal polyps and started treating him for that. I went to our ENT and he said NO polyps!

Anyways, I am a real fan of specialists because they know their field WELL.

We had a scare with my 6 year old who coughed her way through an entire winter. We *retested* her and her sweat test was actually POSITIVE, but, thankfully, she isn't even a carrier! So, the genetics are more complicated than anyone would like to admit.

Good luck with everything!

 

[Dank]

My nose bled a lot and I had a lot of nose problems when I was a baby, it was actually how I ended up being diagnosed with CF, I saw an ENT and he told my mom to head to Hopkins because he thought I may have either CF or something else. I was 3 when I was diagnosed. From the age of 3 till about 14, I had over 20 Sinus surgeries. They would last anywhere from 6 months to a year, and then I wouldn't be able to smell or breathe very well out of my nose. About 2 weeks after the surgery after I healed it was amazing to have my nose work again. I think once I hit puberty my nose started to drain which is why they have not recommended I do anything about my sinuses. I will most likely see an ENT at some point, but mostly I'd have to say that the best thing for me to was to live in a mold-free place (my apartment is brand new) and to have air purifiers running 24/7. This helps keep a lot of issues at bay, and I've been doing this for a number of years now. I'd recommend you see an ENT and get his sinuses clean, also sounds like you guys may be allergic to something in your household. Maybe an allergy test may help bring to surface something you're using that you're all allergic to. Just a thought.

 

[Beccamom]

I have tried all of the nose sprays and nothing works because they all drip back out. I am trying a steroid in the sinus rinse bottle in hope it actually makes it into my sinus cavity. Best wishes.

 

[Gammaw]

have you had a CT to determine if you have polyps deeper in the sinuses? Nasal sprays used to always drain out for my son, but that was because the nasal cavity and sinuses were blocked by his polyps. We had the same problem with rinses that couldn't get through.