Extreme sneezing typical of PCD?

[Mpmc]

I asked my daughter's doctor this before, but was told it was likely due to allergy. Yes she does have known allergies, and her reaction is very typical in this sense, sneezing, coughing etc. But what I don't understand, is why her sneezing has always been so extreme. Since she was born, she would literally sneeze violently, nonstop, repeatedly for hours on end. It affects her sleep and her well being, and it's difficult to convey how extreme these bouts are. If perfume is sprayed nearby, she will violently react straight away. With just about anything in fact.

She's just developed another cold, and as per usual, started sneezing around 3am Sunday morning, did not stop, bar short 2 minute gaps here and there, until around midnight last night. Then it suddenly stops, and she feels it in her throat, then starts feeling it move down her chest a day or two later. Sometimes it stops at viral bronchitis, other times moves to her lungs and she needs IV. I know this can be a familiar pattern for many with colds, but I just wondered is this type of sneezing also familiar to anyone? A quick google seems to indicate it certainly is with dogs, but I can't see anything in relation to humans?!

[N123]

Hi there,

I'm sorry to hear that your daughter isn't feeling well.

I have PCD but I haven't experienced 'extreme sneezing'. I suppose everyone has slight variations of how they experience the condition.

Did you speak to a GP or a specialist consultant about this? Or has she been seen by the Ear Nose and Throat (ENT) team?

As PCD affects the sinus maybe she has extra build up of mucus in her nose that needs to be expelled. I'm not sure how old she is but have you tried a saline sinus rinse like Neilmed? I have an issue with my sinuses and this has really helped me out (I use twice daily). It's helpful to prevent nasal drip as you don't want it sitting in her chest causing secondary issues.

Also, what is she allergic too? Has she had an allergy test to help identify the triggers. If not I would see if the doctor could make a referral.

I also hope the school have been understanding about your daughters condition.

N

[Mpmc in reply to N123]

Thank you for your reply N123. Our daughter is now 8, and yes she regularly sees her ENT consultant, as she has a lot of problems with her ears.

She does have the saline rinse, as she also suffers a lot of sinus congestion. Unfortunately she hates doing it, so it's hard work getting her to keep it up! She's had allergy blood tests, and aside from her nut allergy which she'd already had a severe reaction to, had extremely high levels for dust mite, various list of pollens and lower levels for pet dander, which was interesting, as we've always had a cat! I'm guessing it's the combination of all this that makes her sneeze so much. It's just incredibly hard for her sometimes. It is so unusual, and sneezing violently for hours on end, can be quite debilitating. Thanks again for your reply.

[OanEve]

Hi! Can you tell me how’s your child after 2 years from posting?

[Mpmc in reply to OanEve]

Hi Oaneve, our daughter is now 10 and not much has changed at all unfortunately. Other than a few more hospital admissions, and she has been unwell recently with sepsis. Her consultants’ latest thinking has been towards her immune system ‘overreacting’ to various substances..and although she is still in the genome project to try and find an underlying reason, as yet we are no closer to any understanding. She still produces massive amounts of mucus, and her nose regularly swells and becomes really red and sore...which she is becoming quite self conscious about. Hard to believe not a lot has changed..if anything, this past few months has been decidedly worse. If we hear anything back from the project, will post an update. Thank you 😊

[OanEve in reply to Mpmc]

Is she diagnosed with pcd? Did she have problems since she was a baby ir when did her problems start? Beside sneezing? Is she coughing? Dry or wet? Sinusitis problems? How all her problems start? Thx for answering me. I’ m a scared mom ,doctors think that my daughter could have pcd.