Parent Resource Center
Should I inform the school of my child’s diagnosis?
It can be helpful to inform your child’s teacher, principal, guidance counselor, and school nurse about their diagnosis to let them know of any additional care your child may need while at school and to help them understand what Nephrotic Syndrome is. They may have never heard of Nephrotic Syndrome or understand how it could affect your child’s attendance and learning. Write a note explaining any additional attention that might be necessary, for instance if your child needs access to water, or print out our fact sheets to help inform others. Keeping copies of letters about your child’s diagnosis can be helpful to have on hand to give to teachers, coaches, and school nurses at the beginning of every school year.
- Nephrotic Syndrome Fact Sheet
- Focal Semental Glomerulosclerosis Fact Sheet
- Minimal Change Disease Fact Sheet
Does my child need an Individualized Education Program (IEP) or 504 Plan?
Chronic health impairments do make a child eligible for one of these alternatives, however, not every child needs one of these specialized plans. If special accommodations are necessary, such as extended time to complete assignments and tests, carrying a water bottle, or not being exposed to excessive heat or sunlight, an IEP or 504 plan may be a good idea. Talk to your child’s teacher, principal, and guidance counselor to discuss options that may help. You know your child best! As an additional resource, class notes from your teacher are helpful and there are many websites to supplement lessons that are missed due to hospital stays or doctor appointments.
Check out this link for more information about 504 plans and IEPs: National Center for Learning Disabilities
Can my child participate in extracurricular activities?
Yes, but tell your child’s coach about his or her diagnosis so he understand medical needs, such as additional rest or limited sun exposure. Find what your child likes to participate in and do what you can to make it work for them within their limitations. It is always a good idea to ask your doctor about any concerns before enrolling your child in extracurriculars.
Can my family go on vacations?
Yes, your family can go on vacations. While planning, it is a good idea to note the locations of good hospitals in the area you are visiting. Keep in mind limitations, if the destination is hot: carry water, wear a hat, apply good sunscreen frequently. Make sure not to overwork your child, take breaks if you are walking long distances and find some shade. When dining out, plan ahead to find accommodating restaurants and menus. One way to do this is to download a few mobile apps to help identify dining options. (SEE OUR APP RECOMMENDATIONS)
What is the best way to keep medical records organized?
It can be helpful to buy a large binder separated by tabs for copies of lab results, doctor letters, and other paperwork. If you are going to a new specialist or doctor, it is very helpful to have all records of tests and treatments in one spot. Also if you are applying for additional funding from the state, it is convenient to have all of the records in one place.
Should my child receive vaccinations?
The latest medical thinking states that during treatment it is usually not recommended for children to receive live vaccinations, as treatment medications can weaken the immune system. However, it is always a good idea to discuss vaccinations with your child’s doctor and ask for their recommendations.
How will this affect my family as a whole?
Managing a chronic disease means that daily routines will probably change for everyone in the family. Keeping the entire family educated on Nephrotic Syndrome, involved, and up to date is important. It helps if the entire family is open and honest, especially with their emotions. Remember to still have fun as a family, laugh, play, and appreciate some normalcy!
Want to learn more or join a conversation with other parents? Visit and join our online community, NephSpace!