Editor's Note: This blog is the second in a two-part series chronicling Sue's experience as a mom to a child with Crohn's disease. Click here to read part 1.
Here are seven tips that could could be helpful to parents of a child who has recently been diagnosed with Crohnís disease, or another chronic medical condition.
1. Listen to your child without being an alarmist. A stomach ache or few days of diarrhea does not mean a Crohnís diagnosis. But if the symptoms persist and/or become worse over a period of time, check in with your physician. I learned that blood in the stool is always abnormal in a child or teen, as is unintentional weight loss. Stomach aches that awaken someone from sleep are also unusual, and are often a sign of physical illness (rather than a stress reaction or anxiety).
2. Listen to your doctor and donít be afraid to ask questions. The tests, though not pleasant at any age and certainly not for a child, are vital to diagnose and monitor the condition of a Crohnís patient. Our son continues to have regular colonoscopies to make sure the medications he takes keep his symptoms under control. Sometimes, because they often are in pain, Crohnís patients donít realize the inflammation is back and could be better controlled with a change in dose or new medicine. A colonoscopy is the only way to know for sure.
3. Tell your child the truth. The day he was diagnosed, the doctor sat him right in front of her and explained what was going on in his body to him. Not to us. We were there to listen. But it was, from the start, his health over which he had control. Even at age 11, he was empowered to take control of his health, present and future.
4. Be vigilant with medications. That, too, is no fun, especially for a child. Some of the pills can be large (we put the big ones in a spoonful of applesauce to help get them down), and often the regime is multiple medications several times a day. We used a large pill container and put pills in each night to ensure the meds were taken as prescribed. Medications help control symptoms, which can easily get out of control if ignored.
5. Be informed. Read all you can to be knowledgeable about symptoms, diet, stress, exercise and everything else that can impact this condition. I became a member of the Crohnís & Colitis Foundation of America so I could get their magazine. I purchased a book, ďManaging Your Childís Crohnís Disease or Ulcerative Colitis,Ē that I found helpful. I am sure there are many other great resources.
6. Take advantage of support available in schools for students with chronic conditions. Some may require surgery. Some may have reactions to medications. Frequent bathroom breaks may be a necessity. Work with others who want to help walk your child through this journey.
7. Help your child manage his condition himself. He wonít always be around for you to take care of (think going off to college), and Crohnís is a lifelong condition, so he needs to be able to make his health a priority. Remind him to take his medications and know when his prescriptions need to be refilled. Remind him to get plenty of sleep and take care of himself if he becomes run down. Hopefully your reminders will help the positive behaviors become habits.
Luckily, our son has not required surgery for his Crohnís, and he has, through the years, been fairly responsive to medications. It took about 18 months after diagnosis for his symptoms to be controlled. Not all of his 11-year-old friends understood why he was too tired to play travel soccer anymore or could not spend the night with them for a while. But after he was stable, he went on to high school where he played soccer while maintaining good grades, graduated from Purdue University and is now a commercial pilot. Although he cannot fly if he should have to go back on prednisone, he has no other restrictions for work or play and routinely passes the important flight medical exam. Not everyone I know with Crohnís disease is as lucky, but I am thankful he is able to enjoy life with this chronic condition.