Some children might need immunomodulation therapy (a type of medicine) because their immune system causes damage to the nervous system.
Children’s Health offers more than 20 immunomodulation therapies to help children live life to the fullest despite these lifelong conditions. What makes us different is that we enroll your child in our transitional care program at age 13. This starts preparing them to manage their own care by the time they turn 18.
What is Pediatric Immunomodulation?
When our immune system sends cells to an injury or infection, it can cause inflammation. Sometimes, the immune system mistakenly sends cells to healthy areas of the body. This can damage normal, healthy tissue. Too much inflammation contributes to several diseases and conditions, including multiple sclerosis, neuromyelitis optica, anti-MOG associated disorder and autoimmune encephalitis.
Immunomodulation works by modifying the body’s immune response. Some of the ways to modify the immune system include:
- Blocking immune cells from leaving the bloodstream and entering the brain or spinal cord
- Destroying part of the immune system to prevent attacks from happening
- Preventing inflammation from coming back
- Retraining the immune system to not attack the brain or spinal cord
Our team will work with you to choose a treatment plan that can best address your child’s needs. These medications can be given as a liquid, pill, shot or infusion.
What are the benefits of Pediatric Immunomodulation?
Immunomodulation can prevent the immune system from continuing to attack the body. However, it won't cure the underlying problem in your child's immune system.
What are the side effects of Pediatric Immunomodulation?
The possible side effects of immunomodulation depend on the type of therapy your child is taking. Many have no side effects. Some have side effects like nausea, muscle aches or fatigue. In these cases, we have treatments to prevent the side effects from happening (or we can switch your child to a new medication).
What are the risks of Pediatric Immunomodulation?
We do everything possible to protect your child from any risks of taking immunomodulation therapy. Since immunomodulation does slow down the immune system, your physician will keep a close eye on possible risks. Most of these are mild and very treatable, including:
Some types of immunomodulation can cause more serious risks, like increasing the chances of infection or changing how the liver works. If this happens, we’ll take your child off the immunomodulation. These side effects will stop once your child is off the medication.
What to expect with Pediatric Immunomodulation?
You can expect that your child will require long-term treatment to prevent their immune system from attacking their body. At your first treatment, we’ll discuss how the immunomodulation is taken, how often it's taken and any potential side effects or risks. Then, you’ll see us two to three times a year for follow-up evaluations. During the evaluations, we’ll make sure the treatment is working, do routine blood work, ask if your child is having any side effects, and answer any questions you might have. Follow-up visits are a long-term commitment.
How do I prepare my child for Pediatric Immunomodulation?
We help parents teach their children about immunomodulation. If we're talking to grade school-aged children, we’ll explain how the medicine can help them stay healthy. We want them to understand how they're going to take the immunomodulation (liquid, pill, shot or infusion). We know that shots and infusions can cause a lot of anxiety for children. We’ll talk to your child about how we’re going to make the shot or infusion comfortable, not painful.
We’ll also give your child a new way to talk about any side effects or pain they’re feeling. For example, if they say their leg “hurts,” we’ll teach them how to be more specific about their “hurt.” Does it ache? Does it tickle or feel like crawling ants? Does it feel hot? The more your child can tell us about how they’re feeling, the more likely we can find a treatment that works.
For older children we can work with families to educate children about their condition and treatments. For adolescents we work to empower them to take control of their health care.
We can also introduce your child to other children who’ve been on a similar immunomodulation medication. Talking to other kids can be really helpful – especially if your child is anxious about their condition or their treatment.
What questions should I ask my provider about Pediatric Immunomodulation?
- How much long-term safety data do you have on this particular immunomodulation?
- What are the odds this immunomodulation will succeed or fail in preventing new attacks?
- What are the risks of immunomodulation?
Frequently Asked Questions
Is Immunomodulation safe?
Yes. These therapies have been tested in clinical trials and approved by the FDA as being safe in adults. While some have data specifically for children, we often use these medications in an "off-label" fashion.
Is Immunomodulation expensive?
Unfortunately, yes. However, we can help families reduce or eliminate costs. Before we start any immunomodulation, we’ll contact your insurance company to see if the treatment is authorized or partially covered. If you don’t have insurance or if it isn’t fully covered, we’ll work with non-profit groups who can help pay for it.