Does anyone have anything to say about CT scans on children. It has been suggested for my (almost) 3 year old daughter due to the results of a chest x ray but we aren’t too sure we want to do this. Does anyone have any opinions/results/advice???
Paula
Maya’s mom
Please forward any responses you receive. I also am concerned about this
for my son. Thanks.
Rita Mercier
Chief Financial Officer
Tampa, FL VAMC
813-978-5818
-----Original Message-----
From: mayasmom28 [mailto:kartagener-cpt7391@lists.careplace.com]
Sent: Tuesday, January 08, 2008 3:29 PM
To: Mercier, Rita L.
Subject: [kartagener] CT scan for children
Paula,
I would never have know that my daughter had Bronchiectasis. They never
showed up on regular lung x-rays. Thus, ultimately leading up to the diagnosis of
PCD.
Vickie (Ashli’s mom )
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Figured it out finally–you have to click where it says “WRITE REPLY.” Doh… (see below)…
Your notes were forwarded to me at the PCD Foundation site. I apologize for having to reply in a separate thread, but I don’t post often and could not figure out how to reply!!
There is a lot of controversy surrounding CT scanning right now because of radiation exposure. CT scans are being used more and more often, sometimes for frivolous reasons or when other diagnostic techniques are available. It is this use of CT scans that is creating the controversy, not legitimate use, like what is usually seen with PCD. Because CTs expose patients to more radiation than regular xrays, it is important they be used with some discretion, no matter why they are being done.
That said, CT scan (high resolution or HRCT) is the only way to assess early bronchiectasis or early changes leading to bronchiectasis and it is the best way to assess disease progression. Bronchiectasis does show up on xrays, but only once it is significantly advanced and it is too late to do much to prevent further spread. Since there is no cure for PCD, treatment relies on slowing the progression of disease and the only way to assess if treatment is working may be through periodic CT scans–lung function tests and xrays have both been shown to be less effective than CT scanning. CT scans are also useful in PCD to determine situs issues. It is not at all uncommon for PCD-associated situs problems to be missed with other diagnostic tools. Congenital heart defects and minor abdominal situs problems can be visualized via CT and it is important to know about these issues because the presence of situs problems (both situs inversus and another form called situs ambiguus) put the patient at increased risk for other problems, like cardiac disease.
Getting a baseline HRCT is an entirely appropriate thing for a child with PCD. However, unless there are good reasons to do it like deterioration in lung function, CTs probably don’t have to be done every year. Like every medical procedure, there are risks involved with doing CTs and there are risks involved in not doing CTs. Points in favor of CTs include helping to direct care, assessing individual disease progression and identifying situs issues that may indicate other problems–thus allowing those problems to be treated before they become critical, as in the case of congenital heart disease. Cons are the risk of radiation exposure–the consequences of which are not fully understood. From an anecdotal perspective, we have a robust “mature” adult patient group who have been exposed to CTs, xrays, you name it, for years and years with no increased incidence of cancer or radiation-related illness in the group. Whether this is a just luck or a true indication of negligible risk is not clear, but it is still somewhat reassuring. It’s not an easy decision and there are no black and white answers, but the vast majority of patients with PCD have had at least one and usually more than one HRCT in their lifetime.
Forgot to mention that besides directing treatment decisions, knowing that your child has HRCT-verified bronchiectasis will make them eligible for medications and therapies that may not be covered without the diagnosis. That is more and more the case here in the states and I would suspect it’s true in Canada, as well.
I have never seen bronchiectasis on my chest x rays, but pneumonia
pleural effusion…honeycomb…etc. bronchitis, etc…I had my
first bronchoscopy at 2 years old…this is still the most acurrate
way of diagnosing bronchoscopy, I guess now though CAT scans
are being used in place of the a painful procedure of having a
bronchoscopy…i have had many, when lungs did not get better,
i would be scheduled for a bronchoscopy…I recently had my First
CAT scan in 63 years…I was impressed, and as I have seen
on the bronchiectasis forum, this is the way doctor’s are now
diagnosiing bronchiectasis…funny i had a chest x ray, and the docs
said I had COPD…but the CAT scan showed where my involmement
was and was noted as being severe…Like Michele said, I don’t know about mild…but has your doctor suggested maybe doing a
bronchscopy instead…I always say if a test is needed and is
life saving…I had a CAT scan because Aspergilus showed up in\
my sputum…
Michele,
My concern is more with the longitudinal studies. They indicate that they
want yearly CT scans. My son is 8, that is going to add up to a lot of
scans over a lifetime. I don’t know if we are willing to take that risk.
Rita Mercier
Chief Financial Officer
Tampa, FL VAMC
813-978-5818
-----Original Message-----
From: mmanion [mailto:kartagener-cpt7391@lists.careplace.com]
Sent: Tuesday, January 08, 2008 4:34 PM
To: Mercier, Rita L.
Subject: Re: [kartagener] CT scan for children
Hi Rita,
I know this was a concern for the study investigators, too, and they are instituting special standard operating procedures (SOPs) for the longitudinal study in children ages 0-5 to limit radiation exposure and to address the added risk because children that age require some sedation for the scan. The protocol has been reviewed and approved by radiologists as being safe. What that means is that six independent Institutional Review Boards from the six different study sites had to agree that the infant and child CT protocol was safe and effective for humans. Getting six IRBs to agree to anything is nearly impossible pain (and is why it takes so long for multi-center research to get off the ground), so it is a pretty good indication that there is very limited risk to infants and small children. Additionally, the NIH also has an additional two protocol review boards, and the protocol got the stamp of approval from an independent review board at the American Radiology Society, so the entire study was reviewed by nine independent and very tough committees prior to approval and deemed safe.
The same is true for the over five crowd, although the SOPs are different because there is no anesthesia involved in CT scans in older children (please note also, these are non-contrast HRCTs so no radioactive material is introduced into the blood stream). The longitudinal study over age 5 only lasts five years so the maximum CT exposure from study participation is five scans. However, in kids who start in the 0-5 group and move to the over five group, scans will be adding up and I can certainly appreciate your concern about this. I am meeting with the study investigators by phone this morning and will ask them for feedback on this topic.
Great. Thanks so much for your help. Let me know the outcome of today’s
discussion. I want him to participate in the study, but am worried. 
Rita Mercier
Chief Financial Officer
Tampa, FL VAMC
813-978-5818
-----Original Message-----
From: mmanion [mailto:kartagener-cpt7391@lists.careplace.com]
Sent: Wednesday, January 09, 2008 9:26 AM
To: Mercier, Rita L.
Subject: Re: [kartagener] CT scan for children
CAT scans are used to best diagnose sinus problems too, so when
I had my CAT scan they did both sinus’s and lungs…I have
had many CAT scans of sinuses…i hate to count how many…
x rays just don’t do the trick there with sinus s and having
bronchiectasis show up on x rays…x rays do show stuff,
but not enough…like my friend just had some shadows show
up on her chest x ray…so now goes for further tests…
I do wonder why doctors stopped doing bronchoscope’s…to
diagnose bronchiectasis…?
Hey Betty,
Good point about the sinus CTs. I think the main question from this group has to do with serial CTs for research. I totally agree with you on the need for occasional, appropriate, CTs for diagnosis and treatment. Unfortunately, the picture (ha–no pun intended!) is not as clear for CTs for strictly research purposes.
Bronchoscopy is not done as frequently in CF and PCD today because HRCT is frankly much better for seeing small airways (where bronchiectasis starts) and for providing clear and measurable evidence of disease progression–plus it is non-invasive. A bronchoscope can not get much past the first several branchings of the bronchi so it can be easy to miss bronchiectasis that is getting started in the outside tiny bronchioles. Also, there are risks with bronchoscopy that are of more immediate concern than the still unclear radiation risks of CT scan. Bronchs almost always require some form of sedation or anesthesia, which is clearly a risk factor. They also are invasive, which is why you need to sign a consent, like a surgical consent, for the procedure. It is extremely unlikely, but possible, that an artery could be nicked or some other procedure-related incident could leave you in worse shape after the fact than when you went it. Also, there is a small but real risk of introducing a nasty bug into the lungs from an improperly sterilized scope. There are, thankfully extremely rare, accounts of this in medical journals. I also suspect there is a big cost difference between a simple HRCT (which is expensive enough) and a procedure that requires specialized personnel.
Bronchoscopy is still a very valuable tool, though. It seems to be reserved now for cases where the diagnosis is questionable and eyeball visualization may provide some clues or for when it can do “double duty” e.g. help retrieve good sputum cultures while performing a therapeutic task like removing mucus plugs, lavage (see below), or cauterizing bleeding vessels, etc.
My son, who does not have PCD, recently had a bronch because he had a nasty pneumonia, was in the hospital for a week, and despite scans, blood tests, etc. they could not figure out what was causing it. He was not responding to treatment, so the decision was to do a bronch and a bronchial alveolar lavage (BAL) which is essentially a lung “washing.” The
fluid that comes back is sent for lab analysis and culture. In his case, the bronch was very helpful because the BAL fluid grew a fungus called Cocci which is responsible for Valley Fever. Antibiotics won’t work for fungus, he need anti-fungals, so the bronch helped direct his treatment.
Bronchs are being used much more frequently in other disease states, like lung cancer, now. There is a whole new area of medicine called “interventional bronchoscopy” focused on providing therapy via bronchoscopy. It is mostly used in lung cancer, but maybe it will prove to be effective in the future for bronchiectasis, as well.
well then I hope your son got into that study for cocci then…
now that you finally got proof…yes bronchoscopy’s are used
when CAT scans are not clear too…
I grew up with either…for an anesthetic in the 40 s and on until
CAT Scans came available…but when CAT scans came out…probably
when I was 30 years old…is when I started for better looking
at my sinuses…
With my CAT scan they were unable to determine aspergillus…but
like your son, blood test came back negative…and second sputum
culture with scant fungus…but like my sinuses all cultures
came back negative until I had surgery and could get in to do
a culture…in other words , cultures and tests are not that
acurate either…and sometimes doctor’s have to treat the symptoms
until a proper dx can occur…I hope the cocci is now cleared up
with the proper medication…and is feeling better…too bad there
is no vaccine for that yet.