By Sharon A. Perlman, MD

Almost every child with serious kidney disease requires one or more medicines on a daily basis. Some of these medicines are given to treat the kidney disease itself, some of them are given to correct problems such as high blood pressure, acidosis, or anemia caused by the kidney disease, and still other medicines are given in order to prevent problems such as bone disease, known as renal osteodystrophy, that can occur when kidney function deteriorates. The number and types of medicines required may change as the child grows or as his or her medical condition changes.

When a medication is prescribed for your child, ask the doctor about the details of giving the medicine, such as timing, meals and combining medicines. Some medications should be taken at certain times of the day, or at specific intervals, such as every eight or 12 hours. This is especially important for drugs such as cyclosporine, which require periodic testing of blood levels in order to adjust doses accurately. Medicines like calcium carbonate must be taken with meals or snacks to work effectively as phosphate binders. Other medicines should be taken on an empty stomach, because they are not absorbed into the bloodstream well if they are taken with food. It is important to be consistent in taking medicines the same way each time or it may appear that the drug is not working, resulting in a dose increase or a change in medicine, which was not really necessary. It may be fine for some medicines to be taken together, which makes life easier when lots of medicines are required, but some medicines will interfere with others, and must be taken at separate times in order to be effective. It is very important to discuss these details of your child’s medications with his or her doctor or nurse in order to determine the best combination and doses of medicines for your child.

Developing a medication schedule that is reasonable and effective is difficult. Strategies that may be helpful include pill containers, “medicine clocks” and alarm watches. Pill containers come in a variety of sizes and can be set up in advance for the next day or even for the next week. “Medicine Clocks” are cardboard clocks, (separate clock for AM and PM) with a picture or sample of the medicines taped or glued to the face of the clock at the time the medicine is due. These are especially helpful for caregivers who are unfamiliar with the names or purposes of the medicines. Alarm watches can be programmed to chime at several times during the day to remind the child that a medicine is due, and can be combined with the pill containers so the time on the watch matches the time on the pill container.

Common medication pitfalls include generic medicines being substituted for brand names, or different generics being substituted for each other. This is more likely to happen when you change pharmacies, but can occur even at your pharmacy. When this happens, the name of the medicine may be unfamiliar, and the size, shape and color of the tablet may change, causing concern or confusion. Be sure to check with your pharmacist, nurse or doctor to make sure that the medication is still appropriate.

Many children with kidney disease have other medical conditions that require treatment by physicians who are not familiar with kidney disorders. Make sure to tell these physicians about your child’s kidney disease, and about all the medicines he or she is taking. Sometimes the same medicine is made by different companies and has different names like Septra, Bactrim, Sulfatrim and co-trimaxozole, all of which are the same active medication. In this case, if your child is already taking Septra and is given a prescription for Bactrim, neither you nor the doctor will realize that it is the same medicine being prescribed unless you have given the doctor the entire list of your child’s medicines, vitamins and mineral supplements, all of which can have serious effects on the child with kidney disease. If you or your child’s other physicians have questions, it is perfectly reasonable to ask the nephrologist for assistance.

Providing the necessary medications becomes more challenging as the child progresses from mild to more sever kidney failure, or on to dialysis and transplantation. Unfortunately, one of the leading causes of kidney transplant failure in teenage girls is rejection due to poor compliance with anti-rejection medications. There are no simple answers to why children and teenagers have difficulty taking their medicines. Young children are easier to deal with because their medicines often can be added to their food or formula, and because taking medicines is simply a part of their lives. As the children get older however, the situation becomes more difficult. They do not want to be different from their friends and schoolmates, and often do not want to take medicine at school because they will have to miss part of the lunchtime activities and their friends will “find out” they have a problem. It becomes even more challenging as the child grows into a more independent adolescent, less willing to follow the instructions of parents and physicians.

Even though we expect teenagers to go through the normal developmental stages of invincibility, questioning and rebellion, we all struggle with the effects of their metamorphosis from compliant child to argumentative teen and ultimately into responsible young adult. Even teens who appear to have a good understanding of their need for their medicines, and can verbalize the consequences of not taking them, often are unable to follow through with the medication instructions. Over the years I have asked many patients (who are now very compliant in their early 20’s) what I could have said to them when they were non-compliant teens that would have made a difference. Every one has given me the answer, “nothing.” They just were not ready to understand the consequences of their actions or assume the responsibility of taking their medicines. From them I have learned that it is important to educate the patient and the family about the reasons for the various medicines, and to enlist the child’s help as early as possible in participating in his or her own healthcare. Do not exaggerate the consequences of not taking medicines, because the child has already figured them out. Try to work with the child to find more acceptable forms of medicine (smaller pills, capsules, liquids) and try to simplify the medication schedule as much as possible, without compromising the child’s care.

Asking a child with kidney disease to take medicines is asking a lot of him or her. Asking the parents of a child with kidney disease to make sure the medicines get taken, on time, every day is asking a lot, too. We all know how difficult this task can be, but we all know how important it is for the child’s health and well-being. With time, education, patience, creativity and teamwork the results can be dramatic and rewarding. Give it a try!

Sharon A. Perlman, MD is Assistant Professor for the University of South Florida Pediatric Nephrology. She is also Medical Director of the ESRD Program for All Children’s Hospital in St. Petersburg, Fla.

This article originally appeared in the Winter 1998 issue of aakpRENALIFE, Vol. 13, No. 3.

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