Grace's Note: The Madison's Foundation is an inspiring site created by parents to help families of children with rare diseases. This foundation also provides money to support medical research concerning rare diseases. Take a look at the site and see how they can help your family or patients make connections with other families, provide education, share stories and information.
This site features a M-POWER® RARE PEDIATRIC DISEASE DATABASE. This database search engine is kept up to date by the UCLA medical professionals. My only concern is you have to know how to correctly spell the condition, always my weakness. When you find the disease or syndrome you are interested in, there is a nice template that explains symptoms, treatments and resources.
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a page from: Madison's Foundation
Madison's mom, Marcy, and Madison's anesthesiologist, Sam, have put together some basic tips on helping you and your child navigate the medical system. Hopefully these tips from two people who have been there will help you guide your child through common procedures with the least amount of discomfort and fear.
Dealing with Doctors
- In order to make the best choices for your child’s health care you must be well informed. Ask as many questions as you need to so that you fully understand your child’s condition. Ask your doctor for books, pamphlets, web sites or any other sources that will help you learn more and, in turn, make better decisions for your child.
- Marcy learned early on to keep a journal with questions for her doctor written down in advance of Madison’s appointments. The information at the doctor’s office can be overwhelming and it will be helpful to write everything down so that you can go over it again later. You may also want to ask your doctor if you can bring in a tape recorder so that you are sure you do not miss a thing. You can also use this same journal to make notes on your child’s health. Keeping track of how your child feels or particular symptoms that may occur can help you and the doctor monitor their progress.
- Ask your doctor if they know of any doctors, hospitals or research groups that are currently researching your child’s illness. Especially if your child has been diagnosed with rare or uncommon disease, you will want to stay on top of the most recent advances.
- If your child has just recently been diagnosed with a disease or illness, you may want to visit another doctor for a second opinion. This is a common practice and you should never feel uncomfortable about seeking out a second opinion and asking your doctor for copies of your child’s files for this purpose. Most insurance companies will pay for a second opinion if you go to a doctor within your network.
- Confirm all doctor appointments the day before. Marcy learned this lesson the hard way once when she had prepared Madison for a test by following her doctors orders which were to not allow Madison to eat anything after a certain hour the night before and in the hours leading up to the test. When they arrived at the doctor’s office they were told that the appointment had to be rescheduled for the next day so Marcy had put Madison through this routine again for the second night in a row.
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Dealing with Hospitals
- Before going to the hospital, try to give your child as muchhonest preparation as possible with an age-appropriate description of what is going to happen in the hospital. They may have multiple admissions in the future and multiple procedures. It is important for them to be able to trust you. Tours are often available prior to admission to familiarize your child with the hospital, which will make them feel more comfortable.
- Keep a special bag with toys for the hospital and some art supplies.
- Decorate your child’s surroundings with pictures of family, friends, pets and artwork. This will be extremely comforting to your child.
- Bring them their own clothes. This also allows for familiarity and control with the situation. It can make a huge difference.
- Video games and VCR’s can be requested for your room. Bring your child favorite videos from home. Starbright Foundation also offers services such as portable computer monitors and games at many hospitals.
- Empower your child, if possible, by allowing them to make some decisions about their care even if they are small decisions. For example, Madison decided that she preferred to have her blood pressure taken on her leg… or maybe they would like to choose in which arm they’d like to put the I.V. Having some control of the situation may make it more bearable for them.
- Become friendly with the staff. Be free with praise and compliments. Cordial relationships with everyone on the health care team can only be helpful to your child.
- Ask your doctor if a specialist will be consulting on your child’s case and inform your doctor that you would like to be there when they see your child. Make sure you are able to inform that specialist of your child’s special needs. Ask as many questions as you need answered. You may also be able to schedule a meeting with the specialist.
- Pediatric pain specialists are available at many hospitals. It is important to have a constant level of pain relief for your child if they require it. Catching up to the pain is very difficult. It is always better to treat pain before or as it is just beginning.
- Have your journal handy at all times.
- Take a night off from the hospital. Even though you want to be there with your child every moment, it will eventually physically and emotionally wear you down. This happened to Marcy on Madison’s first extended stay in the hospital. She was so worn down that she ended up getting sick and had to be apart from Madison for longer than she wanted. Sometimes children and their parents are in the hospital for days, weeks or months. It is important to spend a night at home once in a while so that you can be at your best for your child. Ask a family member or close friend to relieve you periodically so that you can recharge. Remember that your mental health is critical to your child’s health.
- Stay on top of your hospital bills. If you feel like you are getting in over your head, talk to the billing office sooner rather than later. Often they can work out a payment plan that will allow you to defer payment and prevent a problem.
- Before you leave the hospital to go home make sure that you have:
- A list of medications and their doses
- A copy of the discharge summary
- Copies of recent labs and medical reports
- Get a copy each radiology study (MRI, CT Scan etc.)
- Keep all receipts. Your insurance company may reimburse you for expenses
- It may be possible to arrange for a reduced rate for long-term hospital parking. Ask hospital administration
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