Using Google to Research Your Child’s Diagnosis
Note: I may earn money or products from the companies, products, or links mentioned in this post.
Understanding and learning how to use Google to research a new diagnosis for yourself or your child is daunting, but it doesn’t have to be impossible!
Diagnosis Anxiety
During the first year of my daughter’s life, she received many diagnoses. Her body failed to thrive; she had severe reflux/GERD, projectile vomiting, aspiration, and Laryngomalacia. At three months old, she had a feeding tube placed.
She spent weeks in the hospital getting tested for all kinds of conditions. When she was six months old, we went all the way to Mass General Children’s Hospital in Boston with the hope of getting more answers.
During this time, I obsessed with figuring out what was going on with my daughter. I would spend hours and hours using Google to research any number of diseases, disorders, and syndromes. The anxiety was intense.
My daughter just turned nine and has gone through more medical procedures than probably 98% of the other kids her age. Some of these procedures have helped us receive some answers, but there are still things going on that baffle us as parents and her medical team.
I’ve had nine years to hone my research skills; nine years to learn how to use google properly to research medical conditions and medical information. The “cyberchondria” is almost gone, and taking anxiety medication has helped me significantly. Instead of obsessing, I am now learning all about the medical world and filing away that information for later.
This will probably sound dramatic, but every bit is true: the research I have done and the knowledge I have has saved my daughter’s life several times.
I know some will roll their eyes at that statement, and doctors and nurses everywhere are shaking their heads. People may make fun of “crazy” parents who Google every symptom and tiny imperfection (which I do not recommend). But when you have a medically complex child with several rare diseases, you get on Google and learn everything you can!
Knowledge is Power
The saying, “Knowledge is Power,” is very true. Filing away the information you learn is very important. This is not “diagnosing your child” it’s being aware; it’s understanding what types of things are typical in the human body and what aren’t.
The saying, “Knowledge is Power,” is very true. Filing away the information you learn is very important. This is not “diagnosing your child” it’s being aware; it’s understanding what types of things are typical in the human body and what aren’t.
The most important thing to remember while using Google to research a diagnosis is to be skeptical and critical and use common sense. Most people who google symptoms do not have cancer, brain tumors, or any scary diseases that may come up in a search.
Lead author Ruth Milanaik said:
âThe internet is a powerful information tool, but it is limited by its inability to reason and think. Simply entering a collection of symptoms in a search engine may not reflect the actual medical situation at hand.”
www.huffingtonpost.co.uk
Learning how to research with common sense and critical thinking is crucial. Here are two ways to effectively use Google to research your child’s diagnosis.
How to Properly google to research Your Child’s Diagnosis
- Remember you are Researching, NOT Diagnosing. When you research, you are looking to learn more about your child’s diagnosis or possible comorbidities that could come with it. The purpose of your research is not to diagnose your child but to learn how to help your child and advocate for them.
2. Choose Reputable Websites. Use google to define your search. Once you see a link or article you want to read, make sure it’s reputable. When researching, you must know which websites are reliable and which ones aren’t.
Websites such as WebMD and Wikipedia or blogs and magazine articles are not recommended for research. While the information on these websites may be interesting, the information is not always reliable.
I enjoy reading others’ stories regarding their syndrome or disease, but it’s important to keep in mind that their story is their story. What worked for them or their child may not work for you or your child.
Reliable and Reputable Websites to Use to Research Your Child’s Diagnosis
- Any children’s hospital website (sites such as Boston Children’s Hospital or Children’s Hospital of Philadelphia)
- KidsHealth.org by Nemours Children’s Health
- RareDiseases.org: NORD (National Organization for Rare Disorders
- Mayo Clinic
- Johns Hopkins
- Cleveland Clinic
- NIH (National Institute of Health) and its subsidiaries
- GARD (Genetic & Rare Diseases Information Center)
- PubMed.gov – National Library of Medicine (Citations for literature, medical journals, and online books)
- Other Medical Journals
- British Medical Journals – Given to us by our geneticist
- Foundation or Society for (diagnosis name)
- For example, The Epilepsy Foundation, The Ehlers-Danlos Society, etc.
The above websites are not an all-inclusive list but a good starting place for reputable and reliable sites to visit when using google to research. There are also many tips on how to get the best possible Google search results using quotation marks, dashes, vertical bars, periods, and more!
How to Google Effectively: 8 Tips You Probably Didn’t Know [and neither did I!].
How to Speak to Your Child’s Doctor Regarding Your Research
If you have a concern that came from your research, make sure to approach your child’s doctor appropriately. I don’t mention that “I googled” something when speaking with my daughter’s team.
It’s better to phrase it as “I researched” and then follow it up by asking if that research is reliable or if what you found could be helpful to your child’s situation. Below are some examples of how to approach your research concerns with doctors.
- “I was researching *insert diagnosis,* and I noticed that it is advised to run *insert labs or tests*. Is this something we could do?”
- “I researched and found that some people with *insert diagnosis* have problems with *insert symptom or comorbidity*. I have these same problems/symptoms; what can I do?”
- “I noticed that it can be common for people with *insert diagnosis* to have *insert symptom*. Is this true? If so, what can we do to treat it?”
- “I researched *insert diagnosis* and saw that *insert comorbidity or symptom* are also common. Could we test for this *comorbidity*?”
- “I saw that some doctors use *insert test or procedure* to diagnose or understand more about *insert diagnosis*. Could my child have this test done? Why or why not?”
- “I have heard from other parents who have a child with *insert diagnosis* use or have good results with *insert treatment or medicine*. Could this work for my child?”
- “I read that *insert test/procedure* can be a reliable way to diagnose *insert diagnosis*. Do you think this is something my child should have done?”
You may notice that most of these examples are in the form of a question. This gives the doctor a chance to think over your question and explain why this may or may not be advisable for your child or situation.
Asking questions about the things you research will also put the ball back in the doctor’s court regarding the continuation of care for your child. You advocated for your child using the knowledge from your research. Now it’s time to let the doctors decide how to move forward!*
What about YOU? Do you use Google to research a diagnosis? Are there any other reputable or reliable websites you have found that are not on the list above? Let me know in the comments above!
* I understand there may be times when you disagree with a doctor. Seeking a second opintion is a possible route to finding someone to listen to your concerns. I hope to write about more in the future.
