You Made It! Now What?


What a relief! You have done it! You got a diagnosis! It might have been a few months or a few years, but you got there. You got the doctors to see what you saw and you got that diagnosis. Now, what?

Depending on what diagnosis you got, there might be many many more things to come for you and your family. You might have a lot of medications to track, a lot of preventative work to do, a lot of recovery time ahead. It might take your family years to get back on track to a healthier life, or it might take a few months. Either way, we are here to help you get on track.

Your Work Toward a Diagnosis
Depending on your situation it might have taken a lot of work, focus and effort to get a diagnosis. Not to mention all the different doctors visits to get answers to your child’s condition. It fries your nerves. You were likely at wits end right before you received the diagnosis. Just getting someone to believe you and give you an answer is a huge relief. BUT it’s very scary. It either confirmed your fear that something was wrong with your child, or it surprised you. After the relief of the answer wears off you might find yourself thinking where do we go from here? What is next?

Following Up with Your Specialist
Likely, your child will require follow-up visits to your specialist. You might have even acquired more than one specialist depending on your child’s condition. Your child will indeed need further testing and office visits. Preparing for these visits is critical.  Here are a few tips to help you through these visits.

Tip 1: Bring another adult with you
You will want to bring someone with you to help you care for your child during the visit and testing. That will give you a moment to focus on what the doctor says to you. This is especially true if your child is under 10 years old. You may be lucky enough to have a child between 6-10 that will sit quietly and not interrupt. You might be OK with them. But if you have a child that is six and under you will not be able to have a serious discussion about treatment and dosages with your child present. I recommend another adult to remove the child from the room during the adult chat. They can walk them in the halls, or take them to the play area.

educationTip 2: Bring a bag of toys
Most of the specialist appointments are long. They are long for an adult, so you can only imagine how long they seem to your child. Bringing their favorite things to do, and even some of their less favorite things can help. Even a bag of random items from home they haven’t played with is a great idea. Something new and different will hold your child’s attention longer than the same old toys.

After You Leave Your Appointments and Beyond
When you are out there on your own in the real world, away from all visits and doctors it can be a lonely place. It’s especially lonely if you don’t know any other families going through what you are. It’s hard to find a connection with other parents when they have no idea what your child and family have suffered.

Seek Support
Talking to family members, friends and finding support groups is important. It will help you release stress, tension and worry and find other people in your situation.

Our site offers a forum area, FREE! You can connect with others sharing similar experiences. It’s at least a place to get out what is going on and look for some helpful advice from others in the same boat.

teachingkidsTeach Your Child About Their Condition
Now that you have a solid answer about what is wrong with your child it’s time to educate them about it. Although your child lives it, it’s time to talk to them about how to share about their condition. They need to know what it really means for their life. How does it fit in? How do they handle it? How will they handle explaining this to other adults?

You can start by explaining what the name of their condition is and how it affects their body. For us, it was about teaching Parker what PFAPA is and what it is not. It is not the same thing as having a fever with a cold. The difference in the fevers is an important distinction for children and adults. He does not have an illness that he can spread to people. Also important for him to understand and share. He needed to know it was his immune system and his own body does it on its own. He is unique. It’s his special fever. It doesn’t make it easier for them every time, but it gives them a firm grasp on the what and why. You also need to teach them WHAT TO DO! This is so important. Most children will still need you to control medications and treatments. But it is important they know what the medications are and when to ask for them. They need to know how to remind a caregiver they need them. My son is 5 years old and he is able to tell his grandparents and other caregivers the correct dosage of ibuprofen and acetaminophen he requires. (I also provide it attached to the bottles themselves in his medical bag that accompanies him everywhere he goes). He knows when he needs it and when he doesn’t need it. He knows how much and he knows he can’t have the same one two times in a row if he is taking them regularly in a rotation.

Children in charge of their condition will not be afraid and know when to seek help and treat themselves.

Keep Track of Your Child’s Medications
I can’t stress enough how important it is to have a tracking mechanism for medications. Depending on the scheduling of medications this might be easy or may be complicated. But it’s essential. Dosage and timing mistakes could cause damage or death to a child depending on the medication.

onsalenowcoverMy book How To Get a Diagnosis provides a medication tracker. It can travel with your child to a caregiver’s house or school. It provides the caregiver a way to double check what meds have been provided and when the next dosage should be. It can go in the medical bag with the meds. You need to use it at home also. If one parent has to run out to the store and the other is at home, and the child needs medication, it’s an easy way to be sure nobody is double dosing. This is especially true over night. Sleepy minds are not good for providing medication.

At the end of the day, you did it! You have gotten on the path to treatment and entering a time to HELP your child. You will work toward achieving the highest level of health possible for them now. Take a breath… take a break. Get some support and help and you will make it.

Share with us your diagnosis story! Tell us what you do to help ease your days and your progress in caring for your child.