Taking pills

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Over the course of your child's treatment, it will be necessary to administer pills and/ or liquid medications on a regular basis. When giving oral medications, it is essential to get off to a good start and establish cooperation early.

To teach Brent (6 years old) to swallow pills, when we were eating corn for dinner I encouraged him to swallow one kernel whole. Luckily, it went right down and he got over his fear of pills.

I wanted Katy (3 years old) to feel like we were a team right from the first night. So I made a big deal out of tasting each of her medications and pronouncing it good. Thank goodness I tasted the prednisone first. It was nauseating—bitter, metallic, with a lingering aftertaste. I asked the nurse for some small gel caps, and packed them with the pills which I had broken in half. I gave Katy her choice of drinks to take her pills with and taught her to swallow gel caps with a large sip of liquid. Since I gave her over 3,000 pills and 1,100 teaspoons of liquid medication during treatment, I'm very glad we got off to such a good start.

Gel caps come in many sizes. Number 4s are small enough for a 3- or 4-year-old child to swallow. Many pills can be chewed or swallowed whole without taste problems. Steroid medications (prednisone, dexamethasone, etc.) should not be chewed, because they have a bitter aftertaste and may cause your child to develop an aversion to all oral medications. Just remember that different children develop different taste preferences and aversions to medications, and gel caps are useful for any medication that bothers them.

After much trial and error with medications, Meagan's method became chewing up pills with chocolate chips. She's kept this up for the long haul.

I always give choices such as, "Do you want the white pill or the six yellow pills first?" It gives them a little control in their chaotic world.

For younger children, many parents crush the pills in a small amount of pudding, applesauce, jam, frozen juice concentrate, or other favorite food.

Jeremy was 4 when he was diagnosed, and we used to crush up the pills and mix them with ice cream. This worked well for us.

We used the liquid form of prednisone for my son, mixed it with a chocolate drink, and followed this with M&Ms. The chocolate seemed to mask the taste.

Our son was 2l/2 years old when diagnosed. We put the med in an oral syringe and put very hot water in a tiny glass. Then we would draw a wee bit of the hot water into the oral syringe and then we would cap it. Then we'd gently shake the syringe and turn it back and forth while the med completely dissolves. Then we would take off the cap and fill it the rest of the way with nice cold Kool-Aid. Alexander would get to choose the flavor of Kool-Aid each day and we would just mix up a couple different batches of flavors and keep them in the fridge. He felt like he was in control because he chose the flavor, and it covered up the lousy taste of the medication. We asked our oncologist about this at the very beginning, and he said that it was a great way to do it because neither the water nor the Kool-Aid had any unwanted effects on the medication. Anyway, we never once had any problem with this method.

The method we used for getting Garrett to take his foul tasting meds was the mixing agent "Syrpalta." This is a grape-flavored syrup available from the pharmacy. It doesn't react with most meds and the flavor can hide almost anything.

We used quite a bit of the stuff. First, we crushed Garrett's pills with a pill crusher/cutter, then we mixed them in a cup before putting them in a syringe to squirt in his mouth. (Keep in mind he was only about 15 months old when he got sick.) We had to make sure he got every drop though, since some of the pills were really small and a little bit of syrup could hide a significant potion of the dose.

You should make sure that any med you do this with is safe to crush or mix with Syrpalta (or chocolate or anything else, for that matter). This particular mixing agent is designed to be "inert," but you can't be too careful. Meds with time release or slow release agents should never be crushed. Some meds should never be mixed with milk, for example.

Most children on maintenance take SMZ-TMP (sulfamethoxazole and trimethoprim), Bactrim, or Septra two to three times a week to prevent a specific type of pneumonia that can develop in children whose immune systems are suppressed. It comes in liquid or pill form, and is produced by several different manufacturers. Ask your pharmacist for a kid taste test. Letting your child choose a medicine that appeals to him encourages compliance.

Whenever my son had to take a liquid medicine, such as antibiotics, he enjoyed taking it from a syringe. I would draw up the proper amount, then he would put it in his mouth and push the plunger.

Since children associate taking medicine with being sick, it is helpful to explain why they must continue taking pills for years after they feel well. Some parents use the Pac-man analogy, "The pills are needed to gobble up the last few bad cells." Others explain that the leukemia can return, so medicine is needed to prevent it from growing again. It is important that parents give children all the required medications; there are many studies showing low compliance results in lower survival rates.

Issues for teenagers about taking pills are completely different from those for young children. The problems with teens revolve around autonomy, control, and feelings of invulnerability. It is normal for teenagers to be noncompliant, and they cannot be forced to take pills if they choose not to cooperate. Trying to coerce teens fuels conflict and tends to frustrate everyone. If you need help, ask for an assessment by the psychosocial team at the hospital to work out a plan for adherence to treatment. Everyone will need to be flexible to reach a favorable outcome.

I think the main problem with teens is making sure that they take the meds. Joel (15 years old) has been very responsible about taking his nightly pills. I've tried to make it easy for him by having an index card for the week, and he marks off the med as he takes it. I also put the meds on a dry erase board on the fridge as a reminder. As he takes the med, he erases it. That way it's easy for him (and me) to see at a glance if he's taken his stuff. The index card alone wasn't working because he couldn't find a pen or forgot to mark it off.

One of the biggest concerns with teens and maintenance is noncompliance. I think it's a delicate balancing act to allow the teen to be responsible for taking his own meds and yet have some supervision of the process. Our meds are kept in a small plastic basket on the kitchen counter. All meds are taken there. I'd never want him to keep his meds in his room where I would have no idea if he had taken them or not.

On Friday nights when he is to take his weekly methotrexate— a sixteen-pill dose—I will count it out and put it in a medicine cup on the counter. I am not always an awake and alert person when he comes home at midnight on Friday night. When I get up Saturday morning, I know immediately if he's taken his meds.

If he had shown any resistance to taking the meds, or any sign of telling me that he had taken them when he had not, I'd be doing this differently. But he's aware of the importance of each dose and the importance of his participation in the team beating the leukemia.

My only other advice is to be sure and ask the doctors what to do about a missed dose for each med. In three-plus years of treatment, you are going to have a missed dose, and it helps to know how to handle it.

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