When your child is diagnosed with Chronic Granulomatous Disease (CGD), you become part of your child’s healthcare team and their main advocate. Your role in monitoring your child’s symptoms, responses to treatments and communicating your observations and concerns is vital to the medical team’s assessment and treatment of your child. In many cases, more than one provider will be involved in caring for your child; therefore, coordinating communication and keeping comprehensive and accurate records of your child’s medical course is essential. Many parents suggest that a journal is an invaluable tool to document events affecting your child’s medical care. The IDF ePHR, an online personal health record designed for the primary immunodeficiency community, is another tool to help record your child’s medical information: www.idfephr.org.
Recommended information to record:
- Brief history leading to the diagnosis, written by you or your child’s healthcare provider
- Copies of laboratory evaluations confirming the diagnosis
- Current list of providers caring for your child with accurate addresses and phone numbers
- Chronology of important events, specifically noting types of treatment and therapy, changes in therapy and subsequent responses to that therapy, surgeries and/or hospitalizations
- List of your child’s current medications
- Allergies to medications
- Immunization record
- Current insurance information
- Explanation of benefits records can be kept in the journal or separately but should be periodically reviewed for accuracy
Insurance concerns that arise are more easily resolved through accurate record keeping, and a journal or IDF ePHR will be useful if your child should need to see a new provider, especially in an emergency. This form of accurate record keeping shortens the lengthy, often repeated history-taking sessions by new providers, allowing more time to focus on the immediate issue at hand. It is wise for more than one person in the family to be aware of the child’s medical routine. A well-documented medical record maintained by you can be extremely helpful for those times when others care for your child.
In addition to bringing a journal to each medical visit, additional suggestions when visiting a medical professional include:
- Prepare questions: Have a list of questions prepared in writing.
- Take notes: Document the visit by writing details about the visit. When possible, take another family member or friend along. It is always wise to have more than one person familiar with the patient’s medical routine.
- Plan ahead: Be prepared for a change in plans or long office visits. Sometimes you and your child will go for tests immediately after the visit or the visit could be extended for other reasons. If this is the case, you may need to make arrangements for your other children.
- Communicate directly with the child: Encourage the medical professional to communicate directly with your child when possible. Although your child may be young, it is always appropriate for them to build a relationship with their healthcare providers.
- Ask for written instructions: Request written instructions concerning medicines and treatments. This helps avoid mistakes by all parties, as well as give you written instructions to be placed in your journal or scanned and saved into the ePHR.
- Prepare a tote bag: Designate a special tote bag just for these medical visits and include the following items:
- Toys and/or activities: Bring a few of your child’s favorite toys to help them feel more comfortable. You can also prepare age-appropriate activities to engage them
- Books: Take along favorite books or a new book to help your child stay occupied and calm during long waiting periods
- Game device or smart phone: These are also useful for distraction and to alleviate boredom
- Notebook: You or another family member can take notes
- Contact list: Include a contact list with names and phone numbers of family, friends and school personnel
- Snacks: Bring snacks in case the visit may be extended
Being Your Child’s Advocate
As a parent, you are your child’s best advocate. It is important to communicate with your child’s providers the concerns and questions you or your child may have. Using a journal or IDF ePHR will help you remember what to discuss with your child’s provider at various visits.
How you can advocate for your child:
- Ask questions about your child’s diagnosis, treatment and plan. If you do not understand, ask again.
- Inquire about what can be done to improve your child’s health such as diet, physical activity, sleep and social activities.
- Maintain consistent communication with the school as your child may miss school days.
- Know your insurance policy and communicate if there are any changes to your provider.
- Build positive relationships with your child’s providers, teachers and therapists. Know whom to call when.
- It is important to trust your judgment regarding changes in your child’s state of health and don’t be afraid to advocate to your child’s health care provider for further investigation. Sometimes it is only you, and not even the child who appreciates a subtle change such as decreased energy level, drop in appetite, or uncharacteristic short temper and complaining that could be early signs of infection without fever, cough or other symptoms.
- Ask about resources for further information at the local, state and national level.
- Connect with IDF for additional resources: 800-296-4433.
TranscendRare – ACTIMMUNE Assistance Program
For patients receiving ACTIMMUNE (Interferon gamma-1b), Horizon Pharma has the TranscendRare Program, which offers patients on ACTIMMUNE, their families and healthcare providers one-stop convenient access to support services and to Program Coordinators who are available to answer questions about the Co-Pay Assistance Program, the Patient Assistance Program and other patient support resources. For more information, call 877-305-7704.
When to Ask for Help
Having a child with CGD may cause the entire family to cope with changes and stressors, especially during time of infection. It can cause emotional and behavioral challenges for the child, parents, siblings and extended network of family and friends. Because of these challenges, family members may be more likely to experience adjustment difficulties as they learn to adapt.
It is important to support the child’s emotional and behavioral needs. It is also important to support the needs of the entire family. Counseling services can be a valuable part of your child’s treatment plan. The most successful families tend to be those who are working together as a team to face the new responsibilities of managing a long-term illness. They build on their family’s strengths to cope with the new stress and can help the family grow closer together.
Remember that it is a sign of strength to be able to ask for help from counselors and other support professionals. Support can be sought at any time. You do not need to wait for a crisis. In fact, it is better to arrange for support sooner rather than later. Also, it is normal to experience the need for support at some times and not at others. Adjustment is an ever-changing process.
Addressing Your Needs
When your child has CGD, it can be difficult to remember to take care of yourself. You may feel guilty if you take time away from your child to participate in activities that you enjoy. Nevertheless, it is vital for parents to take care of themselves. Otherwise, you will not be able to give good care. It is also important to get connected with other parents who know what it is like to have a child living with CGD.
Allow others to help by giving you a break and be sure to carve out time to do something you enjoy. Find someone to listen to your worries and make it a priority to spend quality time with your partner on a regular basis. Learn to deal positively with your stress by eating right, exercising, keeping a journal and spending quality time with your children.
It is incredibly important to stay positive. Remember that with prophylaxis, the average rate of infection for patients with CGD is 3.5 years.2 Do not ignore or dwell on your worries or negative feelings. Instead, recognize and address them in a positive manner. If you try to find the positive side of things, you will be teaching your child a valuable lesson as well as maintaining your own peace of mind.
For more information about programs and resources for parents and children, contact IDF via Ask IDF or 800-296-4433.
- IDF Friends
Adult patients and family members can meet with others through IDF Friends, the private social community created exclusively for patients and family members living with PI.
2 Margolis DM, Melnick DA, Alling DW, Gallin JI. Trimethoprim-sulfamethoxazole prophylaxis in the management of chronic granulomatous disease. The Journal of infectious diseases 1990;162:723-6.
Source: Immune Deficiency Foundation Patient & Family Handbook for Primary Immunodeficiency Diseases FIFTH EDITION Copyright 2013 by Immune Deficiency Foundation, USA. This page contains general medical information which cannot be applied safely to any individual case. Medical knowledge and practice can change rapidly. Therefore, this page should not be used as a substitute for professional medical advice