Part of our food allergy journey.....Practical advice

I submitted this to a medical blog site after I had shared pieces of our food allergy journey with a local doctor. I thought you might glean some information from it. If it does get posted on the medical blog site, I will put up the link for it!

A few weeks ago, I was offered the opportunity to write about some practical approaches to dealing with food allergies in children. I'll be honest: I struggled with what to write. My head is over-loaded with information about our food journey. Should I talk about traveling with children with food allergies? Should I write about being in school with food allergies? I couldn't find a topic that seemed relevant to this site.

Then, one of my best friends called today because her daughter's having GI problems. She was in tears because she thought she might be going crazy while figuring out what's medically wrong with her daughter. She called me not only because I'm her best friend, but because I've been down the road she has and will be traveling. I realized after our call that the practical information I should share needed to be about parents' medical journeys of diagnosing and treating pediatric food allergy and/or GI problems.

Here are the high points of the conversation:

1. Even if the tests are coming back negative, it doesn't mean your child is perfectly fine. You have to trust your parental instincts. If you see symptoms telling you something isn't right with your child's digestive health, then there's something wrong. Keep telling the doctors the symptoms you're seeing. I went into most doctor appointments with weeks worth of notes to talk to the doctor about. I usually had some sort of timeline included in my notes that I handed to the doctor to study. If I didn't feel he looked at the timeline adequately enough, I'd pull out my copy and walk him through it. Parents, remember that you are the only expert on your child; if something's wrong, you'll be the one that knows. Doctors, trust the parent and keep asking questions, keep probing, and keep thinking outside the box.

2. Just because a doctor recommends a procedure, it doesn't mean you need to do the procedure. There were several tests that were recommended to us that we didn't do. We couldn't understand the benefit of an invasive test before trying out the simple, noninvasive tests. As the patient, several tests seemed to be recommended with the "CYA" mentality. We understood that we could be delaying our daughter's treatment by not doing some tests, and we acknowledged those risks with the doctors. Alternately, sometimes you need to do the aggressive tests first because the medical situation is so dire. Work together with your doctor to understand the purpose of the test and why it's being recommended. Then, trust your gut and do whatever will help you sleep a little better at night.

3. Find a doctor that you can work with as a team. If your child's doctor is dictating your child's care without your input, it will be very hard to find a diagnosis. For us, our diagnosis journey was much easier because our doctor respected our input in our daughter's care. There were several times we kept telling the doctor everything we were witnessing, and he'd hear something that would make him re-think his original diagnosis.

4. Tears are okay. Figuring out a child's gastrointestinal problem(s) is hard! As a parent, you're trying to analyze every single possible thing that's going into your child's body which might be making them sick. You're going to be exhausted managing the diet, and you're going to be exhausted managing the doctors appointments, diagnostic tests, and nutritionist appointments. Being tired doesn't mean you're weak; it means you're worried and tired. You should be.

5. When you're figuring out what foods your child can eat, remember that sometimes he/she may not get all the nutrients recommended by the doctors. This is okay. In generations past, children didn't have access to or money for perfectly balanced diets. Generally speaking, they grew up, and they succeeded. Your child will likely be okay in the short-term existing on a diet that's not perfectly balanced. Do your best based on your child's dietary needs while working with your doctor, and then, give yourself a little slack some days.

6. It's good to be protective of your child. Even though the doctor may perform seven endoscopies a day, you're only talking about one very special child's endoscopy (fill-in any other test/treatment here). It's not status quo for you; it's nerve racking. Hopefully, you've found a doctor who understands how different his/her perspective is from yours. 

At the end of the call with my friend, she wasn't any less scared, frustrated, or tired. However, she was validated. If I could change how the medical world treated patients, I would change one thing: taking the time to listen to patients to develop a relationship with them in order to understand what kind of tailored treatment they need, for their body, soul, and mind

1 comment:

DandW said...

Good input that patients of all ages should follow.