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Child with type 2 CCAM or lung sequestration

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Hello,

My name is xxx. I am in the Philippines trying to get back to the USA with my son xxxx. He was diagnosed before birth with type 2 CCAM. I cannot find a Doctor here with any competence. I have read that it could be dangerous for him to fly and cannot trust any opinions I receive here. Could someone please help me to get him there so he can receive surgery to remove the mass in his left lung. I just need to know if he can safely fly, what risks there are etc. I have the prenatal ultrasound reports, Postnatal CT scans, and a new CT scan with all imaging in DICOM format at this dropbox link https://www.dropbox.com/sh/181a1ux21ngysn3/7IfGgp2lt1 Please have a doctor review these and help me decide what to do. I beg you please can someone please give me any advice so I know if he can fly there for treatment or not. I am a USA Citizen and my son is also. The GE image viewerand Syngo viewer are also in the files for viewing the CT images


Category: Pulmonologist

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Category: Internal Medicine Specialist
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Expert:  Dr. Steve Merris replied 4 Days.

Hello,

Thank you for choosing DoctorSpring,

I can understand your apprehension about your child's condition. I need some additional information so that I can provide my best opinion.

How is your child doing currently ? - playing/ daily activities/ eating etc ? Is he breathless at room air / on exertion?

Has he put on weight as expected?

Any frequent admissions in hospital required?any other problem you have noticed with your child? any back / spine problems?

Safety regarding a plane travel will depend on these 2 questions. If your child is asymptomatic on room air, even on playing, he is absolutely fit to travel long distance. To be on the safe side, I would advice you to measure his saturation of oxygen on room air. If it is more than 94%, no risks at all. If its less than 90%, you have to ask for in flight oxygen, and oxygen on transit.
regarding your child's condition, now with a ct scan definitely showing arterial supply from aorta and venous return through azygous, I think the diagnosis is Sequestration lung rather than CCAM 2. Sequestration has a better prognosis and is amenable to surgery. (To be confirmed with your Pulmonologist)

Bottom line is - It seems your child is having sequestration lung, and is asymptomatic otherwise. If his oxygen saturation is normal on room air (Can get it checked at any hospital), then he can be flown to states for a definitive surgery. However do get a confirmation from your local Physician / GP as this opinion is based on limited information.

Wishing him a good and speedy recovery,
Regards
Dr. Jacob George P
MD, FCCP.


Patient replied :

Hello, My son was admitted once for pneumonia about a year ago, he is healthy, has no problems breathing and can run back and forth all day with no labored breathing at all. Every time he had a pulse Ox he was at 96-98%. There is nothing about his appearance or activity that would give one the slightest clue he has any issue. The doctors here are just so incompetent that I cannot trust anything they say. A year ago they wanted to operate, I asked about getting a new CT and they said they didn't need it as it was the same according to X ray results. I love this little guy and just want to get him to a place where real Doctors can treat him. As far as limited information goes, the documents I have provided in my drop box are all they have here as well.


Expert:  Dr. Steve Merris replied 3 Days.

Hello Again,

There are 2 types of sequestration, extra lobar and intra lobar. This seems to be intralobar(based on symptomatology/ absence of other symptoms) while the venous drainage suggests a possibility of extralobar. Both cases, its nothing alarming- if your child has only lung symptoms. Extralobar would have been usually associated with some other congenital problems - which are obviously absent here. Oxygen saturation above 95% is perfectly fine and he should be able to travel all the way to the USA.

I tend to agree with your present surgeons for refusing a repeat CT. We do not expect any change in the mass characteristics. So it will be prudent to avoid further unnecessary and harmful radiation to the child. Anyhow the film will be needed at operation for assessing the arterial supply and venous drainage. (so it better taken at that time).

Wish your son an a safe travel, uneventful surgery and speedy recovery.

Thank you


Patient replied :

Is there any risk for embolism or pneumothorax during ascent or in-flight air emboli.I keep wondering why nobody can definitively say whether it intralobular or extralobular? If this was your child would you feel safe in flight? Thanks


Expert:  Dr. Steve Merris replied 2 Days.

Hello,

There is no added risk for your child (compared to you) for pneumothorax or embolism. The cystic spaces in your child's lung may expand a bit, however, I do not anticipate a pneumothorax. Risk of embolism is same as anyone travelling on a long flight.

The difference between intra lobar and extralobar is the presence / absence of a specific covering for the mass. Tt can be definitely proven only on surgery. Extralobar is usually associated with many congenital anomalies, and at times incombatible with life( due to the presence of other congenital anomalies). Intralobar is usually just a lung finding.

Yea I would fly him if it was my child. Again do get a consent from your treating Doctor as legally I cannot give a medical fitness.

Regards
Dr. Jacob George P
MD, FCCP


Dr. Steve Merris
Category: Internal Medicine Specialist
Experience: 
Medical School - New York University
Internship in Internal Medicine - Beth Israel Medical Center
Residency in Internal Medicine - Beth Israel Medical Center
Fellowship in Pulmonary and Critical Care Medicine - Columbia University Medical Center
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