Testing of baby when CF is diagnosed

Question

Dear experts,
My daughter (11 weeks old), was born on the 5th May 2015 with an intestinal obstruction.
After three weeks the result of the genetic testing arrived: positive (cystic fibrosis).
The CF center decided it was necessary to take Kreon© (pancreatin) for kids and to inhale solution of sodium chloride (3%).
The lungs are okay and she gains weight.
In addition to this (I requested this on my own) after the next visit there will be sent a stool sample into the laboratory in order to investigate whether there is a residual pancreatic function.
There has not been done yet anything more.

My question:
Since when and in which intervals the swabs have to be taken?
I read that in 30% of the babies in the first years, the germ Staphylococcus aureus is detected and moreover 30% have this germ already after their birth.
My baby is just 11 weeks old, and that is why I just wanted to know whether one can exclude this germ? How safe is it?

In the question of March 2015 (page 6) I have read that the clinic sends even sputum into the laboratory for checking purposes.
(baby inhales the solution of sodium chloride and as it coughs, the sputum is sucked). The baby hasn’t even had any symptoms…; however the germ was detected and thus, it could be treated immediately.
What will happen if my daughter has the germ without showing any symptoms? And therefore no investigation is made?

Answer

Hello,

You are reporting, that your daughter, now 11 weeks old, born on the 5th May 2015 with an intestinal obstruction (Meconium ileus with an operation indication?) was confirmed by a genetic testing to have cystic fibrosis.
You report that your baby is treated with Kreon® (pancreatin) for kids and that inhalation with solution of sodium chloride (3%) was prescribed.
You explain that in the next visit there should be taken a stool sample to exclude a pancreatic insufficiency of your baby.
A throat swab hasn’t been yet taken. Moreover you are worried that your baby has the Staphylococcus aureus, despite there are no symptoms.
Furthermore you are asking for the validity of a throat swab related to the germs located actually in the lower respiratory tracts.

Regarding the question of the importance of the stool sample to prove a pancreatic insufficiency one has to say that regarding the intestinal obstruction- supposing it is a classical meconium ileus- one can be pretty sure about the existence of such a pancreatic insufficiency.

Possibly, the already found mutations of the CF-gene in your child are related to the status of pancreatic insufficiency, which is typical. That is why the doctors of the CF centre might have already begun with the Kreon® treatment.
Nevertheless it is sensible to prove the pancreatic insufficiency through the stool sample.
The question related to the throat swab in common, can just be answered partly.
The result of such a swab of an infant, of a toddler, or an elder child is less significant than a result of induced sputum or even of a bronchioalveolar lavage.
The indications of a lavage follow clear guidelines.
The lavage is e.g. indicated when there is a course of disease with resistance of therapy along with signs of infection.
The lavage is also indicated by scientific studies concerning different issues.
But there is not any consent to perform a lavage in routine of a child without any symptoms.
Whether the induction of cough through inhalation followed by sucking the secretion out of the throat in daily routine really delivers more reliable results is doubtful.
To realize the sucking one has to follow strict hygiene orders, in order to get only the germs of the bronchial secretion.
Despite the disturbance of the child, the risk of getting germs of the oral cavity or the esophagus seems to be high.
In addition to this, if this test is not performed well, there is the risk to get along hospital germs in the sample.
You should discuss these questions and eventually find an agreement of the further procedure with your specialist physician in cystic fibrosis.
Mentioning the question of the appointment concerning the first diagnostic measure to analyze the germs of the respiratory tract, one has to add that as the diagnosis is final, e.g. the respiratory swab has to be performed immediately.
This fact is valid too, when your child has stayed in hospital for a longer duration and e.g. required also an operation.
According the issue of the frequency of analyzing germs in your child, especially related to antibiotic treatment, you should also discuss this with your consulting physician in an intensely carried conversation and find eventually together a better strategy.
I wish your child, you, and your family all the best.

Kind regards,
Dr.H.-G.Posselt

12.09.2015