Periodic i.v. with chronic PSA even for children??

Question

Dear Mr. Rietschel,

thank you very much for your elaborate and comprehensible statement on the question of the "Danish model" with an 11-year-old with chronic PSA.

From your point of view, what do you think of the following counter-arguments from the CF center?
- with 3/4 times i.v. per year, our son's veins will be busted in a few years (port during puberty -- not a stunning prospect)
- hearing and the kidneys will be affected
- i.v. will cause resistances
- with an FEV1 of just under 100%, no measurable improvement can be expected
- quality of life/school will be strained

Then rather every 6/8 weeks lung function + pap smear + possibly azithromycin and i.v. with the next infection anyway???

To us, all arguments for/against i.V. comprehensible, which is why we are having such a hard time making a decision...

Many thanks

Answer

Dear questioner,

apologies for the long delay in responding.

You have given a number of comprehensible arguments against a regular i.v. antibiotics therapy which I want to comment on in detail.

Indeed, the veins do suffer from frequent punctures and the drugs that are administered during an i.v. antibiotics therapy, which might potentially necessesitate the implantation of a port catheter. There is, however, the option to do an i.v. antibiotics therapy with a so-called “floating catheter.” Such a catheter is about 10-15 cm long and is inserted through a vein in the crook of the arm. This way, it sits in a major vein and usually lasts for the whole two weeks. Therefore only one vein needs to be punctured once per i.v. therapy and the antibiotics get diluted in a larger blood vessel, so that the veins are spared in the long run.

Despite all this, I would recommend four i.v. therapies over one year. If radiology does not show any changes and lung function remains constant, the intervals between therapies could be stretched. Some patients manage to keep their lung function constant with one single i.v. therapy per year, or even only with regular antibiotics inhalation therapy.

As you say correctly, some antibiotics can harm your hearing and the kidneys. However, these side effects can usually be controlled quite well through regular checks of the antibiotics level and the kidney values in the blood as well as through hearing tests after the therapy is over. Only if these tests return irregular results, one should think about a change of antibiotics.

Of course, regular i.v. therapies can lead to pseudomonas resistances. It has not been resolved conclusively whether these lab-proven resistances are actually significant for the patient, however. Studies have shown that the combination of two antibiotics is effective even if pseudomonas shows resistances to each of the two drugs in the lab.

90% of healthy patients have an FEV1 between 80 and 120%. Nobody knows whether a patient does not normally have an FEV1 of 120%. Therefore, even with an FEV1 of 100%, there is potentially still room for improvement to 120%.

Quality of life is always strained by an i.v. antibiotics therapy. This will also include days of absence from school, even if the majority of the therapies can be scheduled during leisure time. For an 11-year-old child, a therapy can be done at home at least partly after suitable training (“outpatient i.v. therapy”).

Finally, this decision, which is certainly difficult for both your son and yourself, should be discussed with the team at your local CF center.

Ernst Rietschel

05.01.2010