Newly Diagnosed – Tips for Parents, Guardians and Patients
Most people have never heard of vasculitis until a loved one, friend or co-worker is diagnosed with the disease. As a parent or guardian, you will have many questions as you meet with your child’s physician to discuss diagnosis and treatment options. We encourage you to learn as much as possible about vasculitis; this will enable you to make well-informed and educated decisions about your child’s care.
Communication is critical! When a child is diagnosed with vasculitis (or may have vasculitis), parents and guardians and the treating physician/s will need to establish a relationship where questions and concerns can be shared and discussed in a timely and effective manner.
Ask your child’s doctor how he/she prefers to communicate – do they use email or prefer phone calls? Is there a specific nurse you should speak to when you call the office? Can you submit questions ahead of time? Are you charged for the time used for email communication?
Every team needs a leader! Some forms of vasculitis require more than one specialist to be involved in the diagnosis and treatment due to side effects and organs that may be involved. It is important for parents/guardians and the physicians to decide who will be the team medical leader and oversee all treatment decisions, tests, procedures and follow-up. In addition the team leader helps coordinate communication between all team members. Make sure to confirm how information will be shared with all the team members. Many medical institutions have electronic records but if your child is seeing specialists outside the system, ask how best to make sure everyone is kept informed.
One of the first things you will want to do is create a record-keeping system to track doctors’ appointments, medications, test results, procedures and surgeries. Some families use a 3-ring binder to keep everything organized; some families keep everything electronically. Ask your child’s doctor about how you will receive test results – by mail, phone call or email.
Every time you visit a doctor’s office, pick up one of their business cards and keep it in a business card folder. This will make it easier to share contact information with other doctors as needed.
Engaging the patient
Parents and guardians often struggle with how much and what to tell younger patients. We recommend you talk to the doctors about this and decide how best to engage the child, taking into account your child’s age and maturity level. It is very important that as patients get older that they are involved in the decision-making process and have a clear understanding of the disease, treatments and medications.
Compliance issues (taking the medications as instructed) is a huge issue for many patients with chronic illnesses but especially for pediatric and young adult patients who may not understand why they are taking the medications; they just know that they have many side effects. For example, prednisone at high doses can cause weight gain, moon-face and acne so many patients may not want to take it. It is important that parents and guardians and the doctors explain the importance of taking the medications.
Frequently asked questions
A physician has just told me my child has (or might have) vasculitis. I’ve never heard of it. What is it?
Vasculitis means inflammation of the blood vessels, arteries, veins or capillaries. When such inflammation occurs, it causes changes in the walls of blood vessels, such as weakening and narrowing that can progress to the point of blood vessel blockage. A result of vasculitis is that the tissues and organs supplied by affected blood vessels do not get enough blood. This can cause organ and tissue damage that can even lead to death.
Vasculitis is a family of rare diseases that can affect people of all ages. Though some forms of vasculitis improve on their own, most require treatment. The length of treatment varies, with some people using medications for extended periods of time.
The different forms of vasculitis are classified according to the size and location of the blood vessels that are affected. Click here for a complete list of all the forms of vasculitis.
Click here for a detailed explanation of vasculitis.
How do I know the doctor’s diagnosis is correct? How is vasculitis normally diagnosed so that I can compare that to the approach my doctor used?
Luckily, for many forms of vasculitis, there are tests which give at least a pretty good indication. Unfortunately, sometimes the overall health of the patient is a factor which is very difficult to judge. Given the toxic drugs that may be involved in treatment, parents naturally snap to “Are you sure the diagnosis is right and we have to go through all that?”
Your doctor will diagnose vasculitis based on the patient’s signs and symptoms, medical history, a physical exam, and test results.
Who treats vasculitis?
Depending on the form of vasculitis the patient has and the organs affected, the doctor may refer you to various specialists, including:
• A rheumatologist (joint and muscle specialist)
• An infectious disease specialist
• A dermatologist (skin specialist)
• A pulmonologist (lung specialist)
• A nephrologist (kidney specialist)
• A neurologist (nervous system specialist)
• A cardiologist (heart specialist)
• An ophthalmologist (eye specialist)
• A urologist (urinary tract and urogenital system specialist)
Diagnostic Tests and Procedures
Many tests are used to diagnose vasculitis. For a detailed explanation click here.
- Blood Tests
- Blood Pressure
- EKG (Electrocardiogram)
- Chest X Ray
- Lung Function Tests
- Abdominal Ultrasound
- Computed Tomography Scan (CT)
- Magnetic Resonance Imaging (MRI)
How do I know the doctor’s treatment recommendation is correct? How does the treatment compare to the standard of care for this disease?
Again, given the drugs involved, parents want to make sure the need is there. Is the treatment considered aggressive? Passive?
What might cause a doctor to recommend a more or less aggressive treatment?
It is comforting to read the standard for treatment and recognize that your child is being treated that way. It is much less comforting to find out that you are on a treatment plan that isn’t the standard, but it should prompt a conversation with the doctor about whether they know of the standard and why they chose that path instead.
How is vasculitis treated?
Treatment for vasculitis will depend on the type of vasculitis you have, which organs are affected, and the severity of the condition.
People who have severe vasculitis are treated with prescription medicines. Rarely, surgery may be done. People who have mild vasculitis may find relief with over-the-counter pain medicines, such as acetaminophen, aspirin, ibuprofen, or naproxen.
The main goal of treating vasculitis is to reduce inflammation in the affected blood vessels. This usually is done by reducing or stopping the immune response that caused the inflammation.
Different types of treatment
Common prescription medicines used to treat vasculitis include corticosteroids and cytotoxic medicines.
• Corticosteroids help reduce inflammation in your blood vessels. Examples of corticosteroids are prednisone, prednisolone, and methylprednisolone.
• Doctors may prescribe cytotoxic medicines if vasculitis is severe or if corticosteroids don’t work well. Cytotoxic medicines kill the cells that are causing the inflammation. Examples of these medicines are azathioprine, methotrexate, and cyclophosphamide.
• Your doctor may prescribe both corticosteroids and cytotoxic medicines.
• Other treatments may be used for certain types of vasculitis. For example, the standard treatment for Kawasaki disease is high-dose aspirin and immune globulin. Immune globulin is a medicine that’s injected into a vein.
• Certain types of vasculitis may require surgery to remove aneurysms that have formed as a result of the condition. (An aneurysm is an abnormal bulge in the wall of a blood vessel.)
What can we do today to help ensure our child has a long, healthy life? What do we look for on an on-going basis?
Some forms of vasculitis may resolve within a short period of time. For other forms, there is no cure so learning to cope with a chronic illness is critical. One of the greatest challenges is recognizing what is active disease and what may be a side effect of the medications or just a ‘cold’ or the ‘flu’. Family members can help the child adjust to having a chronic illness by modifying activities when energy levels are low or the patient doesn’t feel well. Communication is critical.
Please click here for an expanded list of Frequently Asked Questions.