Getting Organized and Relieving Stress: Sharing Medical Information on your Child

Ever felt overwhelmed when you take your child to the Doctor whether it for a check-up, follow-up or new Doctor and see and hear the million-and-one questions the Doctor asks?  I felt like that many times, especially during Hunter's severe illness this past year.  I sat there listening to the Doctors bring up one question after another about why we were there, what bought us there, was this normal for your child, etc; etc.   It began to get even more frustrating when it came to several different doctors who were assigned to Hunter's case and even more questions came about.

So I decided to do something that I felt would help myself with not only being able to not constantly having to repeat myself about Hunter's care, but also make it easier for new doctors and nurses to understand Hunter better.

I sat down and wrote up a Information Packet.  This packet included EVERYTHING and ANYTHING I could think of about Hunter.

The cover was just a simple thing to do to add his name and mine to show the Doctors and Nurses what this was, this is optional to have. The Table of Contents is also optional to have but I made it as I was trying to learn more ways with Microsoft Word but this will give you an idea of the things that I added about Hunter.  

The idea with the order is to simply place information that you feel is the most important in the packet and also not to go into complete detail. Doctors and Nurses and any other Medical personnel really don't have time to read deep details.  With each section simply write up a brief summary if needed or add dates. 

I started the packet with my information including address, phone numbers, emergency contacts and also listed Hunter's case manager.I also listed some of Hunter's history and often times I get asked about his birth history so I simply copied a section from a packet that I had to fill for a new Doctor appointment.  They usually ask when and where, the age of the mother, how many pregnancies, and the weight and height of the child for birth history.  If you are unsure of all that information, then you don't need to add it to the packet. 

One of the big things to definitely have and this will help you for remembering is ALL the hospitalizations your child was in for. I had been asked where and when and why for any time he was in the hospital and if you have a child like mine the list gets long.  It also helps but not needed to state the reasons why the child went into the hospital for.  In the end you'll be surprised like me to see that there is a lot. (Tip: Add dates of hospitalizations even if it was for one day. There was a reason for going to the ER and some Doctors find it helpful)

Surgeries and Procedures is another big list to have included in the packet. Ever surgery is listed with what and the date.  These are also important to have because many times in a shuffle between Doctors the dates often times get written wrong.  Also listing procedures that your child may have done also helps Doctors. Things like Sleep Studies, and EEGs.  If you don't know the dates to those, no problem, just stating your child has had them done helps to know that he/she is no stranger to different tests needing to be done.

Some sections may be easier to write in a small summaries.  Like the section below about Hunter's Feeding history.

Include as much as you can in simple form but giving as much detail as you can, including current information and past information about that section . Each section can be what you feel the Doctors and other people should know.  Other ideas could be, Blood Pressure/Heart (if your child has problems in those areas), Feedings, Comfort, Likes/Dislikes, Seizures, etc. Remember it's anything you feel your child's Doctor needs to know. 

For the next areas I suggest you also include all Doctors that your child sees and where and what for.  

I recommend that you also include Locations.  Locations is a listing of your child's Pediatrician's office with address, phone numbers, and fax number.  Also list any hospitals your child has stayed at or visited, Nursing Agency office, Medical supplier (also include some of the items they provide), and child's case manager's name and office number.  For all these locations provide addresses, phone numbers and fax numbers.  If there is also a main person to contact, include their names as well. 

The last thing you should definitely add is your child's medications.  I recommend that you include one page that lists all your child's medications. Include the generic name (with the brand in parenthesis), the dose amount given, the strength of the medication, and the frequency given.  

I also suggest for the strength of the medications to be included because often times Doctors rely on how much the strength is to figure any changes to be made.  You can find the strength written near the end of the bottle where the medication name is written and next to it you will see "2mg/ ml" or "1mg/ 3ml"  That is the strength of the medications.  This layout is the main layout to include in the packet, however you should make a separate listing for medication schedule for home.

This list is also good to have separate so it can be changed if the medication schedule changes and to also give to the Doctors so they know when your child is suppose to receive their medications.  

Finally while still on the medication topic also include any information such as Medication Weaning, or Allergies to any medications and give an summary of signs to look for. In Hunter's case he suffers from medication weaning problems, so its included. Also I've added past medicines Hunter has been given. It's important to ask the Doctor for ALL and ANY medications given to your child. Ask them to spell it or print information about it and add it to a list. If there are medications that your child had problems with, mark them with a star and include a note at the bottom about them.  

This packet should also be updated every 6 months or write up a separate summary of recent events that occurred since last seeing the Doctor you've met with. And this packet is good to give to EVERY Doctor, Nurse and even Teachers so they can learn more about your child's medical issues.  

If you have any questions, please comment or e-mail me.