So confused....no diagnosis...stop looking?

[Kristan]

Sorry it is taking so long to get answers. When I did my genetic testing that included PCD. CFTR, and other genes it took 2 months for the results. I think the basic PCD panel may be more like the common CF test, which has quick results.

When I was young, my mom used CPT (chest physical therapy) to help mucus move. I would hang over the couch to help with postural drainage too. You can google a video for information. Depending on her diagnosis, your daughter will qualify for a mucus clearing device such as the vest or afflovest. Hope she feels better and you get the results soon.

 

[Ratatosk]

We did bronchial drainage (bds) or Chest physiotherapy (CPT) on DS 3 to 4 times a day, until he was 3 and he got his vest. Might be a good idea to try. We had a list of step by step instructions with pictures given to us by the respiratory therapy department for use as a guide.

 

[mom2girls]

We don't have results if PCD panel yet but we will be going to riley hosp in indy in the new year! Seeing doctor specializing in PCD and CF. We are so thankful she'll see us. DD having nasal nitric oxide test done while there.
On another note, seeing cardiology for 1st time. Pulm wanted ekg. Results were odd....normal rhythm but something about the pulses going opposite direction they should. I have no idea what that means. Maybe the leads were hooked up wrong?

 

[Mom2girls]

Hi. Just an update. DD was chosen by an organization to receive free whole genome sequencing!! We feel very fortunate and thankful. Hoping to finally get some answers. About 60 more days to wait.....
Anyone know what would cause a new dry cough? Gets worse as day progresses. In evening, during treatments and after, she'll sometimes cough (mostly dry) multiple times/min. Then, subsides and later starts again.
Oh, also on final step of Vest appeal. Fingers and toes crossed....and many prayers too.

 

[Ratatosk]

Dry cough could be post nasal drip. In my son's case it happened when he cultured steno. maltophilia. Cough went away when he was prescribed septra.

 

[Rebjane]

Mom2girls, The sequencing is wonderful news. Dry cough for my daughter can be inflammation; she is on inhaled steroids. If it gets bad enough with wheezes, tightness, shortness of breath we do oral steroids and may need antibiotics depending on the severity of symptoms cough and culture results.

 

[Mom2girls]

Just listened to DD cough through her Vest treatment. We've reduced hypertonic saline to 1x/day per dr order in case that's irritating her airway. I hate that dry cough....sounds so irritating for her. She said she can't help it and it feels so annoying and like there's gunk in her throat but she can't get it out. Any suggestions?

 

[jricci]

Has she tried NeilMed sinus rinse? Maybe something is going on in her sinuses and she has post-nasal drip.

 

[Mom2girls]

Oh, it's so hard to know if it's post nasal drip. We don't have luck with nasal spray for allergies b/c she gets such bad nose bleeds that we can't use them long before taking a break to let her nose heal.

 

[Ratatosk]

IMO, try a sinus rinse, like the Neil Med squirt bottle, not the netti pot. You can find videos online showing how to do it or with tips. DS has been doing them since he was 4 years old and it's amazing the amount of crud that came out of that tiny little nose. He wasn't too thrilled at first, so I had to resort to bribery. But he felt so much better afterwards AND he loved grossing me out. As for sinus spray, OTC stuff isn't advised for people wcf because the antihistimines can be so drying. That said, DS is on prescribed nasal steroids for inflammation -- generic Flonase -- as per an ENT familiar with ENT and in the winter we use saline spray to keep his nasal passage hydrated and if he gets bloody noses, we take a break from it.

 

[kenna2]

I've dealt with dry cough a lot that I finally have under control. Nasal sprays, rinses and things have not helped me out at all and that's because of all the junk in my sinuses. I am a candidate for sinus surgery. I have a couple of ideas that might help. One, get a wedge pillow for sleeping at night. It will help with the post nasal drip so there isn't a build up of mucus sitting overnight. The one I have is the brand Brookstone (like the store in the mall) but we were able to get it at Bed, Bath and Beyond.

Another thing to check out is possible acid reflux. I went 3 years with a horrible dry cough that could not be diagnosed by my CF team. It does cause a bad dry cough because of all the acid getting up into the lungs. At night the wedge pillow will help with this. During the day there are meds that can help and possibly a change in diet. I needed to have surgery to fix mine but those are some of the things that are recommended to try first.

The last thing I can think of is it could possibly be constipation. It is possible to be backed up and still have regular bowel movements. I could never tell if I was constipated until i had an x-ray. This has been my greatest struggle for a long time. It does cause horrible dry coughs. This can be checked on with a stomach x-ray. If this is the case, there is a couple of options after getting things regular again to stay regular. Mirolax twice a day helps or there is a medicine made for IBS called Linzess that has actually been found and is currently being studied by CF researchers to help with CF patients have regular bowel movements. I'm currently taking it and have been for about a month and a half and have had no more issues with my dry cough. My doctor told me they have prescribed this to about 35 patients in my CF clinic all whom have had success with it.

 

[Mom2girls]

Good idea to try saline rinse. I use one daily myself. We had practiced with her last spring but didn't get real far. I'll pull it out and start trying again. The nasal spray she attempts to use is Flonase prescription. We also use saline spray and Vaseline or bacitracin 2x/day to help avoid bloody noses. Thanks for the idea!