I have learned quite a bit as Seizure Mama.
One of my lessons that was learned hard and fast was
“If you know nothing, say nothing”.
I know concerned folks want to help, but bad advice is really hard to stomach when you are trying really hard to decide on the best treatment for your child for a complicated medical issue like seizures and epilepsy.
There were dozens of medications to study, and surgeries to consider. It was overwhelming.
Someone’s “Two cents” was never appreciated. There were several times when I was shocked into speechlessness.
I have two favorite examples, although I wouldn’t call them favorites at the time.
The first involved a woman known for talking about way too much, for way too long, way too often.
Before there was “Caller Id.” she called and I unfortunately answered the phone.
She wanted to say that she had heard that Rose’s medications were not working and that we may want to try contacting some old woman on a farm in the northern part of the county that mixed up herbs and roots and maybe could cure her.
I am a firm believer in natural healing and herbs, but no stranger living out in the woods is going to fill my baby full of weeds and such. We weren’t that desperate, yet.
The second shocker came in printed form. A well-meaning woman loaned me a book written by a woman doctor in another country. Her seizure remedy was to hook the patient up to a car battery and give him or her intermittent shocks to the system to kill the worm larvae that were clustering around the brain causing the seizures by cutting off the oxygen supply to the brain. There was even a diagram with the article.
Now, there may be some incidences of worms causing seizures in Africa, but my baby did not have Ascaris lumbricoides. I could just see me explaining that treatment method to the EMTs that show up at my house to take my electrically jacked-up baby to the hospital.
So next time some “Know It All” offers you some unsolicited advice,
imagine them hooked up to a car battery while chewing on some weeds and let it go.