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Don’t ever feel intimidated by the doctors or the nurses. They don’t always know what’s going on with your child. You know your child best, better than the doctors. So stand up, and if you feel like something is wrong with your child, just be consistent and don’t give up. Get the answers that you need.
Being your child’s voice is the main thing you’re there for. I’m the one that’s with him every day knowing the symptoms and knowing something is wrong. So when something is wrong, being that advocate to say, no, this is what’s happening. Here is the documentation of what’s been going on.
You don’t want to hold back anything. Even if you think it’s silly. You have to advocate for yourself because they’re not going to ask the right questions. They don’t know your body the way you do. And something that feels very insignificant could be something very major.
Having a good healthcare team is essential for anybody trying to manage CGD. You need somebody who listens to you, who will work with you, who understands the intricacies of this disease.
We would bring our information on CGD, our book on it. I made sure every nurse had a copy of the information out of that book so they knew what they were treating.
So the minute you enter as an inpatient, you want to start speaking up and saying I really think this is bothering me or I really am concerned about this, and not with just the doctors but with the nurses and the nurse practitioners around you because the more people you can incorporate into that care team as an inpatient, the better off it’s going be and the earlier it’s going get diagnosed for you and treatment can begin.
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.