My Child Was Recently Diagnosed
Getting Started
Step by step
Start a Medical Binder
The first step in organizing your child's Healthcare is to start a Medical Binder. Purchase at least a one inch binder and put divider tabs in it. Some suggestions to write on the divider tabs are: Medical Summary, Logs, Doctor Letter, Test Results, Doctors. Organization is essential in managing your child’s healthcare. Keep Medical Binder in your car so you have it with you for every doctor visit.
Make a Medical Summary
Make a “Medical Summary” including your child’s current medications. Keep several copies of the “Medical Summary” in your child's Medical Binder at all times to give to new doctors or in case of an emergency. Update “Medical Summary” often and record date at bottom. Below is a template you can fill out and print
Binder for school
Make two smaller versions of Medical Binder (in a report cover) to keep at school and to send with your child to friends or family. Include: Your contact information, any special instructions, “Medical Summary” including medication list, doctor contact information, recommendation letters from doctors (example: antibiotics are needed for surgery because of a heart condition), copy of your child’s insurance card, Medical Consent to Treat (template below, but check with your state laws and treatment facilities to see what requirements they have).
Insurance Case Manager
THIS IS THE MOST IMPORTANT STEP: Get a case manager with your insurance company by calling customer service number on back of card. If you are told your insurance company doesn’t have them, keep asking different departments. Case managers will help you get approved for: Surgery and procedures, treatment at out-of-network facilities, specialist visits, medications. I cannot communicate enough how important this is in managing your child's healthcare!
Keep Hospital Bag in Car
In case you have unexpected hospital stays, you will want to be prepared. Believe me, I have learned this from experience - you don't want to ask your friends to pack your undies for you! Ideas on things to include: Several changes of clothes for you (hospitals are usually chilly, so plan accordingly), one change of clothes and a comfy sweatshirt for your child, several changes of undergarments for your child including socks, toiletries for you and your child, your medication doses for several days
School Medical Plan
If your child will have frequent doctor visits or hospital stays, you will need to set up a medical intervention plan at your child’s school (504 plan). This is in addition to an IEP (Individual Education Plan) they may already have set up. Start by making an appointment with your child’s school Counselor. Your child's school may require this to be revisited each year. You will need documentation from your child’s Specialist about their condition. Your child’s Specialist may have a Social Worker in the office that can help get this set up. In the Jefferson County Public School system in Kentucky, you can call the Health Services Department at 502.485.3387 for assistance. For more information, click the icon above, next to "SCHOOL MEDICAL PLAN".
Letter to Teachers
Write a letter to each of your child’s teachers and meet with them to go over any specific things to watch for. Below is an example.
Is there a Specialized Charity for your child's condition?
Specialized Charities are the BEST resources for helping you navigate your child’s condition
See the steps Explained
Watch this video for more insight
Need help applying for Medical Waivers/Medicaid for your child?
We have step by step instructions
Our mission
“Critically Loved exists to provide guidance and hope for families of chronically or critically ill children.”
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Much Love
“Love always protects, always trusts, always hopes, always perseveres.”
1 Corinthians 13:7