Is it PCD?: Hi! I’ m from Romania and I... - PCD Family Suppor...

PCD Family Support Group (UK)
434 members208 posts

Is it PCD?

OanEve
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?

13 Replies
oldestnewest

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
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
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
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
OanEve
in reply to OanEve

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

Forouzan
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
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
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
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
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
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
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
Forouzan
in reply to Forouzan

Oh dear I mean don't be sorry,

I'm sorry for all mistakes in my writing.

You may also like...