Is it PCD?

[OanEve]

Hi! I’ m from Romania and I have a gorgeous 4 years daughter. She was absolutely normal until she was 2years and a half when , one night, she instantly start coughing until she vomed.

From that moment , she never stoped. We tried everything: a lot of meds, dictors , analyisis. Nothing stoped her from coughing. Her cough is mostly dry , with moments when it becomes wet, but not extremely productive. She had moments when she vomed mucus. In this time, doctors said asthma, but the meds din’t really helped. She shas moments when she coughs a little and moments when she coughs continously.

She never had pneumonia, wheezing or others. She never had ears problems. Never even a sound from her chest. She ‘s coighing mostly daily, rarely in the night, beside the moments when she s in a crize.

After Chrristmas , this year, she started coughing a looooot. Wet and dry in the same time and sneezing a lot( snnezing is a simptom of her since she was little, cause she also have some alergies and rhinitis in spring). She started to sneeze with a lot of mucus. Doctors did a CT and saw sinusitis. All her sinuses blocked with mucus. We are on antibiotics and she seems better but i always observed a better condition on her while she’s on antibiotics.

What we discovered in all this coughibg time was haemophilus in her sputum( many times) even if she was on antbs, the haemophilus was still there, and a streptococum pneumonaie in her nose. We did a bronchoscopia last winter and she had thick mucus with haemophilus in her bronchia.

She is not a sensitive kid, she s going to kindergarten and not becomes ill very often.

Beside this horibble cough, nothing. And now this sinusite.

Never runny nose, or congestionant nose.

Doctors said may be pcd. We sent blood for a genetic test in SUA and waiting for the result. But i feel very nervous abd shocked and i don t know what s happening to her.

Is somebody with a similar row on discovering pcd?

[Forouzan]

Hi dear

I'm sorry for your daughter's coughing.

Your daughter is same as my daughter,she is 4 years and really same as your daughter,we sent her blood for generic test in Belgium but they found just one mutation likely pathogenic. Her doctor gather her nose biopsy for TEM analyse,but it was insufficient. She has sinusitis and take fluticasone and NaCl spray in her nose. But really I don't know her sick name. My daughter never had ear infection or runny nose.

[OanEve in reply to Forouzan]

My daughter neither. Is she coughing dry? Is she coughibg daily? For how long? Does she have crises? Is something makes her feeling better? Do you feel is pcd or not? I’ m so scared abd frustrated cause I can’ t find an answer...

[Forouzan in reply to OanEve]

Yes,almost is dry and she coughing daily,from 2 years ago when she was 2 years,yes when she catch cold,I think that ketotiphen make she Abit better,No,or she has mild PCD, you are like me,I can't write English well and explain my situation,but I visit more than 20 plumonary doctor without true answer to my questions.

[OanEve in reply to Forouzan]

Does mild pcd exist? Can a child be absolutely normal until 2 years, with not even a cough and then start suddenly cough? How’s her sputum?

[OanEve in reply to OanEve]

How is in her better period? But in her worse period? Thx a lot for your anawers.

[Forouzan in reply to OanEve]

Yes,PCD has a spectrum, mild to exterm,

And it's symptoms can begin in teen years,my daughter doesn't have septum that I can see,mostly her coughing is dry,

In period that she is well she has a few cough in day, may be 3 or 4 in day,but in sick period she has etermly bad coughing that she vomiting.

[OanEve in reply to Forouzan]

Forouzan, who told you about this various of pcd? Cause it seems pretty scaring. Everywhere I read, pcd cough is wet...

I hope from all my heart not to be this, but if it’s not this, then..what is it?

Is the nose congestionant? Or I don’ t know...

how did you find out about sinusitis? Is your kid sneezing with mucous?

Is a sensitive kid? Beside cough does she have other simptoms?

Sorry for so much questions but ...i never found somebody who has the same simptoms as ours.

[Forouzan in reply to OanEve]

Her doctor tell me about her version, I'm a sensitive mom, I persisted for test because of her everyday coughing.her doctors said that it is allergy,but she doesn't answer to allergies medicines.once when she was such her Oxygen saturation decreased to 88% and she got Oxygen therapy.

Then I persist to take more test for find reason,finally after her CF negative tests that said that possible she has mild PCD,really I don't know,may be Asthma, she doesn't have any nose problem,we taken radiography from her sinuses and her doctor say she has a bit infection in her sinuses and then one other doctor said that no she doesn't have any infection 😒,really .no she doesn't have sneezing, only she has coughing, without any symptoms.

Really I be happy to answer your question because you are same as me and I found just you in all over the world.

[OanEve in reply to Forouzan]

Allergy at cow milk? It often gives cough...just cough. We are on restricion at milk or any product with mik or cow meat.

Beside allergy treatment, have you tried any long asthma treatment as singulair and corizone?

All doctors said about us that is allergy, more because she has IgE higher and dermathit. But ahe doesn’ respond too well at asthma treatment. I don t even know if it works or not.

In summer she was almost great.

Byt this winter was worse than ever.

I feel tired and I can not hear her coughing.

[Forouzan in reply to OanEve]

Yes,Her blood test for allergy just show low allergy to nuts and home dust

She take singulars powder for about one year but it wasn't good for her,

My daughter doesn't have dermatitis but if yours has dermatitis strongly she has asthma, you or her father have any experience with coughing in your childhood period?

Some children are need to more medicines like prednisolone in worse period

I have air purifier and humidifier maybe help her but really coughing for 2 year make me depressed.

[OanEve in reply to Forouzan]

I would say that home dust is a serioua fact for coughing, but no, no for so much coughing. It’ s hard for me to believe in pcd, as long as this kid was absolutely normal. Not even a cough until 2 and a half, no nothing. But...as you say...it might be a mild form. Mild, ok, with so much cough. It seems for me that not even severe cases don’ t have so much cough. Don’ t know. I’ m so scared and it seems tonme that it’ll never end.

[Forouzan in reply to OanEve]

Dear

Kids are sensitive and their reaction to allergens are different from matures.

Is your daughter has more cough in morning?her cough is same in all day long?maybe she has reflux.

Don't be sorry,I promise her coughing will be end.

[Forouzan in reply to Forouzan]

Oh dear I mean don't be sorry,

I'm sorry for all mistakes in my writing.

[OanEve in reply to Forouzan]

Hi! Tell me please you are better. We’re waiting for pcd results. After a period she was well, she started to cough...again..😰😰😰

[Forouzan in reply to OanEve]

Hello dear, my daughter has coughing when she wakes up and when she is running. If your daughter not sick. Few coughing in day is normal,but if her coughing is productive, physiotherapy can help you. Wait for the test result. I pray for you and hope your daughter is completely healthy and has abit allergy.

[Forouzan in reply to OanEve]

Hello, is your daughter better?

[OanEve in reply to Forouzan]

Hello! I’ ve just seen your message. My doughtwr is a little bit better but not perfect. She didn t have any crisis since last winter, but she still coughs in the morning, daily. Not only in the morning, also in time of the day. Thw cough ia very dry. How ia your child?

[SeekingSimplicity]

I am 37 an my caughing started about three years ago but only got worse within the last couple of years. I get some mild cough and then some bad episodes. We are still waiting for results to see if it os PCD or not, but I do have situs inversus totalis so ....

I remember always having sinusitisnas a young child. My nose was always so itchy I broke it a cople of times...

She will be ok. Hope you find answers ... I made it this far !!

[OanEve]

Is your cough dry or wet? Thx for answering