How to Build a Fear-Free SCIg Routine for Your Child With Primary Immunodeficiency

Like most infusions, SCIg is given with a needle, which can cause fear and anxiety for parents and kids — and that’s a completely normal response, says Craig Platt, MD, PhD, an immunologist at Boston Children’s Hospital and an assistant professor of pediatrics at Harvard Medical School in Boston.

It may help to remember that you can always switch to intravenous infusions if you'd like after discussing it with your child's immunologist, says Dr. Platt. “But most patients who try SCIg prefer it; most patients adapt extremely well,” he says. Here’s how to make that transition easier for your child — and for you.

Reducing your child’s anxiety often starts well before the needle comes out. A few small changes to how and where you do infusions can make a difference in how your child experiences them, Platt says.

Keep the schedule predictable. “This gives children a sense of control and psychological preparedness,” Platt says.

Make the space cozy. “This shifts the emotional frame of mind of the patient away from a scary medical procedure to a safe home routine,” he says.

Add a warm-up routine. “A warm bath or a warm compress on the site can increase blood flow and act as a calming measure,” Platt says.

Set up before your child is in the room. Set up the tubing and draw the medication before your child is in the room, so there’s no nervous fiddling with supplies in front of them, Platt suggests. Try to project calm, relaxed energy, since children pick up on their parents’ stress. “Modeling calm energy is helpful to reassure kids that the process is safe and within control,” he says.

A visiting nurse can guide your family through the process and stay involved until you feel ready to go solo, Platt says. “I’ve never had a family say that they didn’t have enough support when getting set up on SCIg,” he says.

Children’s bodies present some different challenges from adults’ when it comes to where and how to give an infusion. “Fortunately, SCIg needles are tiny compared to IV needles; I often show patients directly the difference in size,” says Platt.

Smaller Bodies, Smaller Sites

Needle Placement and Technique

“Pain can indicate that the needle is in too deep. Itching or redness can indicate that the needle is too shallow,” Platt says.

Numbing Options

Before you begin, ask your child’s medical team about numbing medications to reduce pain from the needle, says Platt.

“Lidocaine numbing cream can be used to assist with self-injections,” says Megan Ehret, PharmD, a professor in the department of practice, sciences, and health outcomes research at the University of Maryland School of Pharmacy in Baltimore. “Apply to clean skin about 30 to 60 minutes before the injection, and wipe off before the needle stick."

Distraction is one of the most effective tools you have during an infusion, says Platt.

Common approaches include one-on-one conversation, a favorite book, or a movie or show a child only gets to watch during infusions, along with small treats, a sticker chart, or a special meal afterward. Choosing one or more of these strategies that fit your child’s age and preferences can make a big difference, Platt says.

For younger children, simple in-the-moment distractions, such as singing a song, counting out loud, blowing bubbles, or watching a video, can meaningfully reduce how much pain and fear they feel, says Ehret.

You can also ease anxiety by letting your child make small decisions, like where to sit or which bandage to use afterward, says Danielle Nance, MD, a hematologist with Banner Health in Gilbert, Arizona.

If your child’s infusion site is leaking, the cause could be a needle that isn’t secure or isn’t the right length, or a volume that’s too high for that site. If infusions are consistently taking longer than expected, ask your care team to double-check the tubing, needle set, and number of sites you’re using.

With the right approach, infusion day can become something your child associates with connection rather than fear.

Platt shares the story of one patient who’d been on infusions since he was about 3 years old. By age 9, his symptoms had improved enough that Platt approached the boy's mother to discuss stopping treatment. But the boy interrupted to say he didn’t want to stop.

“It turned out that he didn’t want to give up the ice cream and movie that had become part of the weekly routine,” says Platt. He now shares that story with new families as proof the process doesn’t have to be miserable.

Positive reinforcement with praise and gentle touch can also build a child’s self-esteem and confidence, says Dr. Nance.

“Rewards help as well — consider investing in some gold stars for each time you attempt the work, and extra stars for when things get to completion,” she says.

Most children end up adapting to SCIg far better than their parents expect, says Platt. “It is often much harder for me to convince patients that it may be the right time to try stopping once they get used to the medication,” he says.