I'm so happy to read your sweetie is doing better.(knock on wood) It's fortunate/unfortunate depending on the situation that we (people with medical issues) can look "normal"
I've had areas on my CT scans that were felt to be atelectasis that have improved("popped" back up) with Chest PT. I'm not sure if the cause of atelectasis determines whether or not chest pt would help. At any rate I hope your daughter doesn't need to see the pulmonologist before her next scheduled visit. Let us know how she makes out.
Thank you very much for all of your responses. It has been a great help to me and I really appreciate it.
PCDgal - thank you very much for asking about my daughter. She is doing well. You would never know that something is "wrong" with her. One good thing, she hasn't had a cold in 6 weeks or so and that's a huge deal. She is still taking the flovent and prevasid and will continue to do so until we see the pulmonologist in April or earlier if something changes.
I was wondering how your daughter is doing and how you are holding up.
Hope you were able to sort through all the medical garb and find answers to all your questions.
Lung functions can be normal when the problem found on the chest x-ray is small. It may take longer than 6 weeks to see improvement in your daughter's chest x-ray. Chest x-ray problems in the right middle lobe (RML) may take months to clear. Sometimes the problem fails to clear completely. However the really good news is that her lung functions are normal!
RML syndrome describes recurrent RML collapse, infection or a combination of the two. Of all the lobes of the lung, the RML has the poorest drainage or clearance. The airway to this lobe is long and thin. As a result mucus gets trapped. If all that persists is a slight chest x-ray problem in the area of the RML, nothing needs to be done. If however, this area becomes the site of recurrent infection, the RML may eventually have to be removed.
Atelectasis is an area of the lung that has collapsed so that it is not receiving air. This can be a part of RML syndrome. Atelectasis can also be due to reflux. It sounds like your daughter has "silent" reflux. This means that the person has never had any of the typical reflux symptoms. Have her continue to take the Flovent
My atelectasis is due to a genetic disorder I have called PCD(primary ciliary dyskinesia) My cilia do not work properly to filter or move things(mucus, bacteria and such) out. I get areas of atelectasis. I do chest physio therapy( airway clearance) It can be manual clapping, the flutter. I use the vest. For me it helps loosen the mucus plugs so I can cough them out.
Thanks for sharing so much info. I was going to ask if she was tested for CF. I'm glad that was negative. Do you know if they did a cilia biopsy when they did her bronch? The PCD I have is clinically similiar to CF. We(PCD'ers) were moslty all tested for CF first. I'm not saying your daughter has PCD but maybe you can ask your doctor about it.
I've had recurrent pneumonia, bronchitus and upper respiratory infections since birth. My middle lobe collapsed as a kid. I had my tonsil and adenoids out. I've suffered numerous ear infections and have had tubes. I get sinus infections. These symptoms alone can be just about anything but together I think it's worth pursuing a little deeper.
I hope I'm not scaring you. This is meant to give you more info to ask the docs more questions. Please feel free to ask me any questions. You can post here or e-mail me at ***@****
Thank you very much for writing back. I do appreciate it. I don't mind all of the questions since this is all new to me so hopefully I will learn something. Looking back, it is possible that my daughter had these probs since birth. When she was younger, she was constantly sick w/colds & occasional bouts of bronchitis and pneumonia. Antibiotics would be issued and she would get better. She always seemed fine, nothing slowed her down so it would be a surprise when the ped said she had pneumonia or bronchitis. She was always susceptible to very high fevers w/no other symptoms. Maybe it was all related..? She had her adenoids removed and tubes inserted in her ears to relieve her of the numerous ear infections. Since then she has been "fine" until about a year ago she had pneumonia that just wasn't going away and that is when we started with the pulmonologist. She has been tested for allergies, immune system and CF- all coming back normal. The bronch showed her lungs were normal, no sign of tumor or foreign bodies but evidence that she suffers from reflux.
Sorry for my questions but when you ask if the doc suggested chest pt, do you mean physical therapy? If so, they haven't suggested it. How do you manage your atelactasis? Does it ever go away completely?
My daughter is a super active wonderful little girl who doesn't seem or act sick. I feel frustrated because I am not sure I truly understand what she has and how to correct it. Any help or insight would be greatly appreciated.
Links with more information:
Right Middle Lobe Syndrome
Author: Nemr S Eid, MD, Director of Pediatric Pulmonary Medicine, Professor, Department of Pediatrics, University of Louisville School of Medicine
Long-term follow-up of children shows that most patients do not experience recurrent or persisting symptoms. This indicates that the first line of treatment in all cases is conservative medical management, except in cases involving neoplastic origin and those with bronchiectasis.
Chest physical therapy and postural drainage are the hallmarks of therapy.
Treat the asthmatic child with aggressive anti-inflammatory therapy such as inhaled steroids. Consider systemic steroids.
Provide the patient with chest physical therapy and postural drainage. In unresponsive patients or patients who have a predisposition to airway colonization, an appropriate antibiotic, as determined by a bronchoalveolar lavage (BAL) culture, should be added to their regimen.
Patients with fungal infections (eg, histoplasmosis) or tuberculous infections who have hilar adenopathy and complete
blockage of their right middle lobe should be treated aggressively. The addition of systemic corticosteroids may be
1: Int J Pediatr Otorhinolaryngol. 1987 Jun; 13(1): 11-23. Right middle lobe syndrome in children.
Livingston GL, Holinger LD, Luck SR.
I have areas of atelectasis. From what I remember RMLS is just a fancy name for atelectasis in the right middle lobe. Has your daughter had these respiratory symptoms since birth? Has she been tested for other things? When they did the bronch did they do a biospy to check her cilia? Do the docs suggest chest pt at all? Sorry for all the questions.
I had my pft's done while I had a lung infection and my lung function was normal. Maybe the RN here can explain more about it.