Chronic granulomatous disease (CGD)
and children
Explaining CGD to children
Watch this video for answers to questions your child may have about CGD.
Voiceover/Sound
I get a variety of questions… Anything from how did I get this? Is it contagious? When will it go away? What’s the cure? Can they still go to school? Is this gonna be forever?
They definitely feel very isolated because it’s a rare disease– 'It’s' overwhelming to process it.
So, when I speak to a child about CGD, sometimes it’s confusing cause they don’t really know what’s going on inside them and they don’t, they can’t really understand that their body can’t fight off germs like a normal person could.
I just tend to tell them that, you know, when they were made, there was just a little different gene given to them. There was something different in them that came from their parents, and it causes them to be able to get sick faster.
I tell them it’s like a Pac Man. As soon as I mention that, about the Pac Man, their eyes light up and they get excited cause they can visualize that. It’s like a Pac Man that eats up the invader. But inside the Pac Man, they’re missing something that will destroy that infection. And they can’t kill that invader.
CGD is something you’re born with and it’s not contagious. CGD is a condition that you’re gonna have for the rest of your life, but it doesn’t mean it should be something that slows you down.
I usually let them know that it doesn’t mean that they have to be isolated from the world. It’s just that they need to be careful, you know, and that they’re okay.
And I just sort of give them some examples of things. If they get a little tiny cut, they need to be very careful and get it washed out right away as opposed to just continuing to run and play with their friends. And I really try to just get the point across that things that might seem small to their friends can really turn into big things for them.
It sometimes can get very exciting when they learn that they don’t have to do any yardwork. They don’t need to cut the grass or do any of the mulching or rake the leaves in the fall. They will immediately look at their parents and say, did you hear that? Did you hear that? I don’t have to mow the lawn any longer!
When children are ready to go to school, there’s a lot of educational material available. Not only for the parent to prepare for school, but also the school to prepare for the child.
One of the resources I really like to provide for my families is CGDConnections, and there’s also a Facebook page where people can go and connect with each other and talk about the challenges that they’re having or their successes with their journey through CGD.
Success at school starts with the right help
School offers children a chance to learn about the world around them and make friends. One way to help is to make sure parents and school staff are prepared for a child’s CGD needs.
Educate school staff about CGD
Meet with members of the school staff—especially the school nurse—before classes begin. Talk to them about the risk of serious* infections for your child with CGD.
Ask for alerts
The school nurse or other staff member may be able to send a notification if an illness is going around the school. You should feel confident about the health and safety of your child at school.
Discuss risky activities
Make a plan with your child and with school staff about which school activities are off-limits. These might include field trips to a farm, or planting seeds in dirt, or playing on woodchips or mulch.
Create a school plan
Long stays in the hospital or time away from school due to CGD infections may require special arrangements for your child. Schools provide 2 programs called an Individualized Education Program (IEP) and a 504 Plan. Use the chart below to help guide your decision about which program is right for your child.
Support plans for your child
IEP | 504 | |
|---|---|---|
What is it? | A written plan customized to support students aged 3 to 22 years | A written document for any student in public school who has a disability |
Who is eligible? | Student must fit 1 of 13 disability categories | Student can have any disability, including physical or mental impairment |
What’s in the plan? | Document outlines goals that include:
| Doesn’t have to be written or list specific goals, but includes:
|
Who creates the plan? | By law, a multiperson team including:
| No legal standard regarding who is involved, but typically includes:
|
How often is progress reviewed? | Required at least once a year | Not required, but usually once a year |
How much does it cost? | No cost to families | No cost to families |
Get a copy of the IEP/504 plan guide to share
Take this side-by-side comparison as a reminder of the school support programs available for your child with CGD.
Download helpful school resources for you and school staff
Parents' Guide to CGD
Information to help parents get through the school year and educate school staff about CGD.
Teachers' Guide to CGD
Educational materials to help school staff learn about CGD.
Seasonal school-year checklist
A school-year planner for parents filled with reminders and CGD talking tips.
*An infection is serious if you have to go to the hospital and/or get intravenous (IV) antibiotics.
Taking care of the caregiver
Explore essential resources and support for caregivers and partners.
Approved Uses and Important Safety Information
What is ACTIMMUNE® (Interferon gamma-1b) used for?
ACTIMMUNE is 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.
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.
When should I not take ACTIMMUNE?
Do not use ACTIMMUNE if you are allergic to interferon gamma, E. coli-derived products, or any ingredients contained in the product.
What warnings should I know about ACTIMMUNE?
ACTIMMUNE can cause flu-like symptoms. At high doses, the resulting symptoms may worsen some pre-existing heart conditions.
ACTIMMUNE may cause decreased mental status, such as confusion, depression, and hallucinations. It may also cause difficulty walking and dizziness, particularly at high doses. These symptoms usually resolve a few days after reducing the amount of ACTIMMUNE you take, or if you are no longer taking it at all, as prescribed by your doctor.
Use of ACTIMMUNE may affect bone marrow function and may limit the production of cells important to your body. This can be severe and usually goes away after reducing the amount of ACTIMMUNE you take or if you stop taking it entirely as prescribed by your doctor.
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 of age.
In rare cases, ACTIMMUNE can cause severe allergic reactions and/or rash. If you experience a serious reaction to ACTIMMUNE, stop taking it immediately and contact your doctor or seek medical help.
What should I tell my healthcare provider?
Be sure to tell your doctor about all the medications you are taking.
Tell your doctor if you:
- are pregnant or plan to become pregnant or plan to nurse
- have a heart condition such as irregular heartbeat, heart failure, or decreased blood flow to your heart
- have a history of seizures or other neurologic disorders
- have, or have had, reduced bone marrow function. Your doctor will monitor these cells with blood tests at the beginning of therapy and every 3 months while you are taking ACTIMMUNE
What are the side effects of ACTIMMUNE?
The most common side effects with ACTIMMUNE are “flu-like” symptoms such as fever, headache, chills, muscle pain, or fatigue, which may decrease the longer you take ACTIMMUNE. Taking ACTIMMUNE at bedtime may help with these symptoms, and acetaminophen may help prevent fever and headache.
What other medications might interact with ACTIMMUNE?
Some drugs, like certain chemotherapy drugs, may interact with ACTIMMUNE and could make it more likely that your heart or nervous system could be damaged. Tell your doctor about all the medicines you take.
Avoid taking ACTIMMUNE at the same time as a vaccination.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/safety/medwatch, or call 1-800-FDA-1088.
The risk information provided here is not comprehensive. To learn more, talk about ACTIMMUNE with your health care provider or pharmacist. The FDA-approved product labeling can be found at www.ACTIMMUNE.com or 1-866-479-6742.
Approved Uses and Important Safety Information
What is ACTIMMUNE® (Interferon gamma-1b) used for?
Approved Uses and Important Safety Information
What is ACTIMMUNE® (Interferon gamma-1b) used for?
Approved Uses and Important Safety Information
What is ACTIMMUNE® (Interferon gamma-1b) used for?
ACTIMMUNE is used to treat chronic granulomatous disease, or CGD.
Approved Uses and Important Safety Information
What is ACTIMMUNE® (Interferon gamma-1b) used for?
ACTIMMUNE is used to treat chronic granulomatous disease, or CGD.
Approved Uses and Important Safety Information
What is ACTIMMUNE® (Interferon gamma-1b) used for?
ACTIMMUNE is 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.
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.
When should I not take ACTIMMUNE?
Do not use ACTIMMUNE if you are allergic to interferon gamma, E. coli-derived products, or any ingredients contained in the product.
What warnings should I know about ACTIMMUNE?
ACTIMMUNE can cause flu-like symptoms. At high doses, the resulting symptoms may worsen some pre-existing heart conditions.
ACTIMMUNE may cause decreased mental status, such as confusion, depression, and hallucinations. It may also cause difficulty walking and dizziness, particularly at high doses. These symptoms usually resolve a few days after reducing the amount of ACTIMMUNE you take, or if you are no longer taking it at all, as prescribed by your doctor.
Use of ACTIMMUNE may affect bone marrow function and may limit the production of cells important to your body. This can be severe and usually goes away after reducing the amount of ACTIMMUNE you take or if you stop taking it entirely as prescribed by your doctor.
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 of age.
In rare cases, ACTIMMUNE can cause severe allergic reactions and/or rash. If you experience a serious reaction to ACTIMMUNE, stop taking it immediately and contact your doctor or seek medical help.
What should I tell my healthcare provider?
Be sure to tell your doctor about all the medications you are taking.
Tell your doctor if you:
- are pregnant or plan to become pregnant or plan to nurse
- have a heart condition such as irregular heartbeat, heart failure, or decreased blood flow to your heart
- have a history of seizures or other neurologic disorders
- have, or have had, reduced bone marrow function. Your doctor will monitor these cells with blood tests at the beginning of therapy and every 3 months while you are taking ACTIMMUNE
What are the side effects of ACTIMMUNE?
The most common side effects with ACTIMMUNE are “flu-like” symptoms such as fever, headache, chills, muscle pain, or fatigue, which may decrease the longer you take ACTIMMUNE. Taking ACTIMMUNE at bedtime may help with these symptoms, and acetaminophen may help prevent fever and headache.
What other medications might interact with ACTIMMUNE?
Some drugs, like certain chemotherapy drugs, may interact with ACTIMMUNE and could make it more likely that your heart or nervous system could be damaged. Tell your doctor about all the medicines you take.
Avoid taking ACTIMMUNE at the same time as a vaccination.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/safety/medwatch, or call 1-800-FDA-1088.
The risk information provided here is not comprehensive. To learn more, talk about ACTIMMUNE with your health care provider or pharmacist. The FDA-approved product labeling can be found at www.ACTIMMUNE.com or 1-866-479-6742.