Parents’ School Guide to CGD
Information to help parents get through the school year and educate school staff about CGD
When a child is first diagnosed with chronic granulomatous disease (CGD), a common question parents ask is, “Can my child attend school and participate in the regular classroom and still be safe?” The answer is yes. That starts with making sure parents and school staff are prepared. Many parents of children with CGD say back to school time can be stressful, so planning for it is important.
Parents of children with CGD should meet with members of the school staff, especially the school nurse, before classes start. It’s important they are educated about the risk of serious infections in people with CGD. Request a school healthcare meeting, and include the following people:
As soon as school starts, contact the school nurse and set up a teacher conference to explain CGD.
—Selma, mother of 2 sons with CGD
Parents should plan to share which activities put their child at risk. Activities such as field trips to a farm, planting seeds in dirt, and playing on a playground with mulch or woodchips should be off limits. Parents should also ask that the school nurse or other staff member alert them if an illness is going around the school. By working closely with the school staff, parents can feel more confident about the health and safety of their child.
Stay updated with helpful information about managing CGD.
ACTIMMUNE® is part of a drug regimen used to treat Chronic Granulomatous Disease, or CGD. CGD is a genetic disorder, usually diagnosed in childhood, that affects some cells of the immune system and the body's ability to fight infections effectively. CGD is often treated (though not cured) with antibiotics, antifungals, and ACTIMMUNE.
ACTIMMUNE is also used to slow the worsening of severe, malignant osteopetrosis (SMO). SMO is a genetic disorder that affects normal bone formation and is usually diagnosed in the first few months after birth.
Don't use ACTIMMUNE if you are allergic to interferon-gamma, E coli-derived products, or any ingredients contained in the product.
At high doses, ACTIMMUNE can cause (flu-like) symptoms, which may worsen some pre-existing heart conditions.
ACTIMMUNE may cause decreased mental status, walking disturbances, and dizziness, particularly at very high doses. These symptoms are usually reversible within a few days upon dose reduction or discontinuation of therapy.
Bone marrow function may be suppressed with ACTIMMUNE, and decreased production of cells important to the body may occur. This effect, which can be severe, is usually reversible when the drug is discontinued or the dose is reduced.
Taking ACTIMMUNE may cause reversible changes to your liver function, particularly in patients less than 1 year old. Your doctor should monitor your liver function every 3 months, and monthly in children under 1 year.
In rare cases, ACTIMMUNE can cause severe allergic reactions and/or rash. If you experience a serious reaction to ACTIMMUNE, discontinue it immediately and contact your doctor or seek medical help.
Be sure to tell your doctor about all the medications you are taking.
Tell your doctor if you:
The most common side effects with ACTIMMUNE are "flu-like" symptoms such as fever, headache, chills, muscle pain, or fatigue, which may decrease in severity as treatment continues. Bedtime administration of ACTIMMUNE may help reduce some of these symptoms. Acetaminophen may be helpful in preventing fever and headache.
Some drugs may interact with ACTIMMUNE to potentially increase the risk of damage to your heart or nervous system, such as certain chemotherapy drugs. Tell your doctor about all other medications you are taking.
Avoid taking ACTIMMUNE at the same time as a vaccination.
The risk information provided here is not comprehensive. To learn more, talk about ACTIMMUNE with your healthcare provider or pharmacist. The FDA-approved product labeling can be found at http://www.ACTIMMUNE.com or 1-866-479-6742.