For many individuals with Congenital Sucrase-Isomaltase Deficiency (CSID), the road to diagnosis was long and hard. It may have taken months or even years to get a correct diagnosis. Some of you may feel that healthcare providers did not believe you or questioned your symptoms or their severity. You may distrust the medical community because of the delayed diagnosis.
Nevertheless, once you receive the CSID diagnosis, you need to develop a positive working relationship with healthcare providers involved with your care. You and your healthcare provider must work in partnership with each other to achieve the best outcomes. The best relationships between you and your healthcare providers – your physician, nurse, and registered dietitian – are built on mutual trust, respect, and openness. Here are some tips on how to communicate effectively with your healthcare provider.
Trust Your Instincts and Judgment
You are the expert on your child or your own body. You can also become an expert on CSID. Realize that it is very important to discuss your insights and observations with your team of healthcare providers. Do not be intimidated by the medical knowledge of your healthcare providers. Instead, ask many questions to ensure you are highly informed. You know when something is working for you and when it is not.
The same for your child. You have intimate knowledge of your child’s history, routine, development, strengths, and needs that should always be shared with your healthcare providers. Remember that in time, you will become the CSID expert in your or your child’s care. Your input is invaluable, but also keep in mind that you can still benefit from the input and suggestions of your healthcare professionals.
Seek out Information
Because CSID is a rare disorder, little information about this condition is available to the general public or even to medical professionals. It is vital that you seek all the information you can to make the best medical decisions for yourself or your child. Sources of information could include medical journals, online searches, and CSID support groups in addition to consultations with medical specialists. Check any information you find with your physician to confirm its credibility. Learn the terminology of CSID so you can discuss the diagnosis effectively with your healthcare providers.
Maintain a CSID Medical File
Many of you find it useful to use a 3-ring binder or an online folder to store medical information. Sections can include healthcare provider contact information, diet information, food composition tables, food logs or diaries, medication information, school information, and medical or other helpful articles. Ask for and keep records of any procedures, lab tests, and pathology reports. Ask for and keep any physician’s reports or clinic notes. Also make your own notes on diet or medication issues or any other questions you would like to discuss at your next appointment. Find an organizational system that works for you.
Ask Your Healthcare Provider for a Written Care Plan
Sometimes it is difficult to concentrate on the oral instructions given in a medical setting. This communication can be especially challenging if you are simultaneously trying to supervise your children. Many of you may feel somewhat uncomfortable in the healthcare setting. Try to limit distractions while attending a medical appointment by planning ahead. To ensure that you understand instructions from healthcare professionals, ask for a written care plan or report. Also, always plan ahead for your medical appointments and come prepared with written questions or concerns you want your healthcare providers to address.
Change Healthcare Providers, If Necessary
Sometimes a healthcare provider’s communication style and your communication style do not work well together. In that case, you may need to search for a new physician or registered dietitian who better fits your style and needs. In the best interest of you or your child’s care, you should not hesitate to seek the best healthcare professionals to meet your needs. You may need to shop around for a team of healthcare providers who are willing to work with you and your child collaboratively. You need to feel comfortable with this team of healthcare providers to ensure the best outcomes for yourself or your child.
