Pharmacological method

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Most pediatric oncology clinics offer the choice of sedation and/or anesthesia for painful procedures or non-painful procedures that require that your child lie completely still. If you find that your child is distressed by painful procedures (bone marrow aspiration and spinal taps), it is reasonable to explore all available options for pain relief.

One father, a doctor just completing his anesthesia residency, explained:

That first bone marrow was horrible. To have my little 3-year-old look up at me with tears in her eyes and ask, "What else are you going to let them do to me, Daddy?" was just too much. It was the worst day of my life.

His wife, a nurse, said:

We really made waves by insisting that Meagan be sedated for her spinal taps and bone marrows. It was mostly a logistical problem, but we held firm, and now it has become much more routine for many other kids as well.

The ideal pain relief drug for children should be easy to administer, be predictable in effect, provide adequate pain relief, have a short duration, and have minimal side effects. There are three topical anesthetics in wide use for pediatric procedures. EMLA cream is put on the skin one to two hours prior to the painful procedure. Numby Stuff also uses a cream anesthetic, but a mild electrical current helps it penetrate the skin in just a few minutes. Ethyl chloride spray is used immediately before the procedure to anesthetize the surface of the skin. Additionally, lidocaine may be injected under the skin to numb the skin and tissue under it. For more information, see Chapter 10, Chemotherapy.

Drugs for sedation and/or general anesthesia are given intravenously. Some facilities take the child into the operating room (OR) for the procedure; others use a preoper-ating area or clinic sedation room and allow the parent to be present the entire time.

Drugs used for pediatric anesthesia during procedures include:

Valium or Versed plus morphine or fentanyl. Valium and Versed are sedatives that are used with pain relievers such as morphine or fentanyl. These drugs can be given in the clinic, but the possibility of slowed breathing requires expert monitoring and the availability of emergency equipment. The combination of a sedative and a pain reliever will result in your childs being awake but sedated. The child may move or cry, but will not remember the procedure. Often, EMLA or lidocaine is also used to ensure that the procedure is pain-free.

Joel was treated from ages 14 to 17. During his spinal taps he would get Versed once he was positioned on the table. I would always sit at his head and keep his shoulders forward while his head rested on my arm (kind of a hug). As the versed took effect, he would look up at me with huge eyes and give me a grin a mile wide, then he would say something off the wall. He had to spend an hour flat after the LP. He'd be groggy the whole time, constantly asking me what time it was and how soon we could leave. He'd forget he asked and ask me again five minutes later. This continued for the whole hour. Later, we'd laugh about it. He never remembered anything from the LPs.

• Propofol. A milky liquid given by IV, propofol has rapid onset with a rapid recovery. Administration and monitoring by an anesthesiologist (doctor who specializes in giving anesthetics) are required. Propofol, a general anesthetic, will cause your child to lose consciousness. At low doses, propofol prevents memory of the procedure but may not relieve all pain, so it is often used with EMLA or lidocaine.

Patrick (12 years old) hates the lack of control involved when having a procedure and getting propofol. He attempts to regain some control by verbally explaining to the doctors just exactly how he wants it done each time. He has his own little routine—tells them jokes, sings "I Want to Be Sedated" (you know, the Ramones song), etc. Patrick's biggest problem is the taste from the propofol. We have tried so many different things when he wakes up to mask the taste—Skittles, gum, Gatorade. We now have a supply of atomic fireballs. I give him one as soon as they bring him out and he says that really helps cover the taste.

• Ketamine. Ketamine needs expert monitoring. It has a much longer recovery time than the drugs listed above, and upon awakening, up to 30 percent of children may become confused and/or hallucinate. For these reasons, ketamine is no longer in wide use for pediatric sedation for procedures.

There are many types of drugs and several methods used to administer them, from very temporary (ten minutes) mild sedation to full general anesthesia in the operating room. Discuss with your oncologist and anesthesiologist which method will work best for your child.

Let's face it, kids don't care about blasts, lab work, or protocols, they just want to know if they are going to be hurt again. I think that one of our most important jobs is to advocate, strongly if necessary, for adequate pain control. If the dose doesn't work and the doctor just shrugs her shoulders, say you want a different dosage or drug used. If you encounter resistance, ask that an anesthesiologist be consulted. Remember that good pain control and/or amnesia will make a big difference in your child's state of mind during treatment.

Emotions may run high after a difficult procedure. Rather than engage in a lengthy dissection of what went wrong, schedule an appointment time with your physician well in advance of the next scheduled procedure to air your concerns and problem-solve.

Because children with leukemia are treated for years, some children build up a tolerance for sedatives and pain relievers. Often, over time, doses may need to be increased or drugs changed. If your child remembers the procedure, advocate for a change in drug and/or dosage. It is reasonable to request that an anesthesiologist be present to ensure adequate pain relief.

My job as an oral surgery assistant required me to be very familiar with different types of sedation. From the first day of Stephan's diagnosis, I quietly insisted on versed for bone marrows and spinal taps. We have been in treatment for two years, and they still fight me every time, saying that it's just not necessary. When I make the appointment I tell them we want Stephan sedated, and then I call and remind them so that all will go smoothly.

All types of sedation require that your child not eat or drink for a number of hours prior to the procedure. After the procedure, your child may eat or drink when she is alert and able to swallow. Sedation can result in complications, primarily to the airway. It is imperative that sedation be carried out under the care of trained, experienced personnel and that the child be monitored until fully recovered from the anesthesia.

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