How to make your child’s doctor listen to you!
1st : VIDEO TAPE (If possible) what your child is doing.
For example, if you suspect any of the following, try your best to capture it on video.
Autistic features, seizure activity, pain, loss of coordination, or anything that is visual.
Bringing only your words to the table when the doctor asks, “What going on?” You might as well be walking into a courtroom without evidence! Keep a recording device on you at all times so it’s ready to go when you notice the change.
This is based on personal experience. When my son began having Infantile Spam’s. I brought him to his pediatrician, I told him what I was seeing. He said “Kids do funny things sometimes”. I knew he was wrong. So very wise advice was given to me by another TSC mom. “Video your son having his spasms” she said, and so I did. Doing this made the world of difference. We drove our son to the city and showed every doctor that came in to see him, the videos. As I thought, Conner was then admitted and diagnosed with Infantile Spasms. TRUST YOUR GUT!
2nd : JOURNAL your heart out. Keeping a log of your child’s activity is important. When the doctor asks you “When did that begin?” “How often?” “How long does it last?” Questions like these can be referred back to your journal which makes it a whole lot easier. Instead of just sitting there and saying “Oh I don’t remember…” It is amazing how much they appreciate your seriousness of your child’s care. They respect your efforts so they know that you will be expecting the same effort from them!
3rd : MEDICAL BINDER’s are very helpful. You can make your own or ask your resource center if there are programs that provide you one for free. Conner’s binder consists of Medication lists, dates of surgery, clinic notes, MRI and CT scan disks, and lots of other important information. I don’t know about you, but I hate being asked the same question a million times. My son’s binder has become my best friend. The first thing I do is hand them his binder. I hand it to his pediatrician, the ER nurses etc…All they have to do is make copies of what information they need to obtain.
4th : RESEARCH. I know the internet can be scary and some of you may disagree with me, but I have found researching my son’s symptoms, extremely helpful. The stories you find of other parents could possibly save your child’s life. When Conner was on ACTH (Steroid for Infantile Spasms) it began making his tumors in his heart grow! Thought the big city hospital never heard of such a thing. I printed out what I found and brought it to their attention. They quickly ordered an ECHO, long and behold, I was right. They immediately stopped his medication. Who knows what would have happened if they didn’t believe me.
I hope you have found this helpful. Please contact me if you are having difficulties communicating with your doctor. Remember that the doctor will only be as polite as you are to them. So only be stern when you feel the need to be. Again…trust your gut, you are usually right. Yes some of us may be looked at as “Paranoid”, but my motto is, ”It’s better to be safe than sorry!”
Here is a link to a video I took of Conner’s weird symptoms. I already knew they were Infantile Spasms, the beginning diagnosis was Multifocal seizures but they transformed into IS a month later.