Hello. One of my 6yr old twins has always been more susceptible to illness, RSV at 5 weeks, a couple bouts of bronchitis and pneumonia, recurring ear infections and grommets at 7mo of age, then recurring sinus infections and asthma diagnosis after being hospitalized in respiratory distress from enterovirus D68 in 2014. They tested her around the same time for PCD via nasal biopsy but admittedly didn’t get a great sample and it was clear.
She has since continued to have asthma exacerbations, croup and a lot of difficulty with illnesses and sinus infections. Last year, she was on antibiotics 210 days. This year, since Jan 1, we have only been off of them 24 days. She has a continual wet cough. Last April she had a bronchoscope and her lower airway looked normal and no narrowing that would explain the croup. They also did a sinus balloon surgery as the CT scan showed chronic inflammation and took adenoids. None helped the recurring post nasal drip and wet cough.
Last summer, we did the sweat test and she was negative for CF and her titers were tested and she was reimmunized so all is ok there. She was recently given the nitrite oxide test and had low numbers so we finished a 6wk course of antibiotics, doubled nasal steroids and increased saline rinses and she tested higher (one side was lower) so now they said she is inconclusive for PCD. We are all stumped as we don’t believe it is her asthma giving us the grief. They mentioned genetic testing. Should I just push for that next visit to get a clear answer? Even on the antibiotics she improves some so she can sleep but still has the wet cough. We went to the ocean recently and after 2 days the nasal congestion improved some and the cough wasn’t as frequent but very productive and wet when she did have it. I just want my baby better and my gut knows something is off.
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Twinnything
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Hi - sorry to hear that your daughter is struggling. Genetics may help but only pick up 70% of PCD cases so may not necessarily prove she has PCD. Are you in the UK? Are you doing chest physio on her - does that help?
Thanks so much. We are stateside but our specialist said the UK community has much more activity. With only 70% being picked up with genetic testing, what else do they do? Her log shows how many illnesses, we fluctuate on the nitrite oxide pending antibiotic and steroid use but it seems inconclusive. They never said anything on chest physio but thankfully through the site I saw more and just do some on my own.
I would contact the US PCD Foundation to see if they can recommend can help you with getting your diagnosis. In the meantime ... doing chest physio will help clear any mucus, keep a note of what colour it is and if it turns green try and get it tested so you can use the right antibiotics to treat infections and you may like to try sinus rinses (Neilmed is good ... which you can watch videos on YouTube on how to use). Good luck and keep us posted on how you get on!
Thank you. We are with one of the top researchers and specialists of PCD in the US and he is stumped. We do the Neilmed irrigations as ENT thought perhaps that would prevent sinus infections yet they persist.
I would definitely keep pushing to find answers. I was wrongly misdiagnosed with asthma until I was in my 20s and as a result now have bronchiectasis.
You need the right diagnosis so she can be treated under the right consultant. Since seeing a specialist in bronchiectasis and PCD it has helped incredibly.
Danni - so sorry that you were delayed getting a proper diagnosis and the necessary care. I don’t wish this on anyone but I feel it does answer why we continually have so many infections since she was a baby and the up and down on the nitrite oxide test and the fact it’s come up twice in her short life demands full follow through it is just tough trying to learn as much as possible on what our options are.
I don't know if its any help, but your story sounds very similar to ours. We have had a very similar outcome. We still struggle getting on top of what is going on with our 6 year old despite all the checks. When we had the PCD testing it was inconclusive - but they did say his cilary didn't beat as frequently as they should. I was advised at the time, it was most likely damaged due to repetitive bacterial bronchitis/sepsis. We struggle every winter, this winter has been better than the last but asthma medications rarely help, only steroids. We go for months where my son can't really run around without being sick. Its frustrating, I understand your concern. With the bronchosopy/CT scanned it showed bronchiectasis and I was told over time as he got older this would become less of an issue. This year we are 6 weeks down the line of significant nasal discharge, three weeks of the most awful cough, which was better with steroids but it never really clears up until April/May. They are going to do allergy testing again, but I'm not sure its the answer. What I have noticed is that whilst the recurrences aren't so frequent, they do sometimes feel worse, but he does get over them. Previously he wouldn't without strong antibiotics. Whether it's he is growing, and that's helping I am not sure, but really I just wanted to give you some reassurance that I understand the frustrations and to suggest trusting your instincts, following up wherever you can. Regarding the ocean, I have seen some sprays that are supposed to help a lot with the nasal congestion. Perhaps you could try that for a few weeks? I am about to get some to give that a go too. Good luck.
Thank you so much. As much as I don't like hearing another family going through the same thing, it is kind of reassuring to know we are not alone, right? Sounds like we are in very similar boats with the inconclusiveness but having enough issues going that something is clearly occurring off of the radar. We repeated allergy testing last May and it was still clear. Our cough never clears up even seasonally. It may be less frequent at times when we don't have a sinus infection (which the last two years is very rare) or on antibiotics but it isn't as frequent as when ill or allergy season. Summer is our best season but she still has a really wet cough. Hopefully the fact that his cough does improve seasonally means there is something they can do to help resolve it. All the best! (Oh! and we do the saline sprays and irrigations)
Your story sounds very similar to ours. We still do not have a formal diagnosis, however our local pulmonary doctor feels she has PCD and it is just not a form that is detectable at this point. Therefore, we have opted to not spend any more money on genetic testing bc the doctor says not all genes have been identified at this point. Fortunately, our doctor has made orders to where we have a smart vest, nebulizer with continuous levibuterol and sodium chloride prescriptions. We do both treatments morning and night, paired with the Neil med nasal rinse. If my daughter misses ANY of these treatments her cough returns. When it returns and the cough gets ahead of the treatments we visit our local salt spa for 45 minute halo therapy sessions. We have ditched the inhaler and avoid antibiotics at all costs. Not many work anymore and we have to use IV antibiotics anyway. Since we started the “rigerous” and “time consuming” treatment plan (with modified school schedule) health has really improved. However, when treatment missed we see how very important they are at maintaining her health.
Best of Luck in your journey! Everyone’s is different.
Kelly, thanks for all of the insights. Our pulmonologist is one of the leading experts and also told us the genetic test isn't conclusive as they are still continually finding out more. I called for a plan now that we are back on antibiotics yet again but he's in Egypt at a conference. We will see him in a month again and I think my plan needs to be how we can treat her knowing something is going on but we can't specifically label the type. We do the nebulizer with albuterol when needed and do the nail med saline irrigations a few times a day and then her daily asthma meds and antihistimines plus guafenisin. I think PT or something to help try to expel mucus may help. Because of her asthma, we still need the inhaled steroids and usually prednisone about 3x a year it seems because she gets croup and stridor. She always has the cough and sinus congestion - always. But when she is doing OK it is just occasional and when we are in need of antibiotics (usually we can make it 2 weeks off before the sinus needs them again) or sick, it is nonstop so she can't even rest and then her asthma flares as well.
Can you please chat more on the salt spa experience? I've heard of them but does it help? And school modifying. She is going into first grade and has a twin brother so I can't home school just her because he still would bring in viruses. I am moving them to a new school because our current administration hasn't been very helpful in following her action plan or reducing risks. We miss so much school it makes me curious what will happen in the future.
The salt Spa is great for any flare ups with sinuses. It may take several sessions, but it works!!! Just be mindful of consuming enough fluids before and after. My daughter had the worst ever headache after several treatments and I know it was due to her lack of fluid consumption. We do the full 50 minute sessions not the 30 minute ones.
Is there one nearby you?
Also, I noticed your mention of antihistamine use. Is that a nasal spray? What brand?
As for school, it was a struggle being out so much that may daughter was unable to learn. The traditional schooling just did not work with her getting the instruction she needed. It created a lot of holes in learning while she was out. I did also homeschool my older child, as well. They both wanted to attend high school so we tried Belle her last year of middle school with a modified school day (not easy with a rotating schedule). She did get sick and miss some days like other kids, but did not go on a picc line for the season. I do feel the extra rest and constant treatments (twice daily), even when well have been a life changer. As well, she is older and more cognoscenti of her surroundings and how they may affect her.
I can send you a copy of her 504 plan if you would like. Just send me an email to kelly neal.lakenorman@gmail.com
This is my younger daughter’s first year of high school so it is a different beast bc where we live the HS is very overcrowded. Side note: I made her sign up for chorus, which I thought would help her learn how to work deeper into her lungs. She didn’t come out as Selena Gomez, but I do feel it helped her.
Feel free to reach out anytime. I will try to do better on checking this site.
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