Do You Ever Feel Like a Broken Record ?

I was looking for a title for my story such as "Whack-a-Mole Caregiver" or "Parent on Repeat", because when your child or loved one is first diagnosed you can feel like you are going in circles and constantly repeating yourself to health care professionals. They have all the medical history right in front of them. If a parent/caregiver feels this way, imagine how a newly diagnosed patient feels.

What the heck is a seizure?

When my daughter was first diagnosed with Epilepsy at age 8 I knew absolutely NOTHING about it; had never heard of the word seizure before. There were minimal to no pamphlets available and no one talked about epilepsy or its side effects and stigmas. The uncertainty was unreal.

The broken road to a diagnosis

The broken record diagnosis every time my daughter had a seizure (in her early years) was "She has the flu"!

Every. Single. Time.

I didn't know any different, so I started to believe it. I later learned do not believe everything you are told and do your own research. Always follow your gut instinct.

After a few visits and constantly being told after every seizure, "your daughter had the flu", I started questioning it (I am my daughter's voice and advocate). I felt like a broken record; constantly asking why. Unfortunately, the health care professionals stuck to their story, not hearing me, which led to frustration and uncertainty.

Finding a new path

I decided to ask our family physician for advice. They suggested maybe change neurologists. Now, be reminded that every time you switch neurologists, you once again become that "broken record" that "whack-a-mole caregiver", having to repeat your daughter's medical history all over again. Sometimes I had to say it more than once depending on each individual visit discussion.

For my daughter, we have switched neurologists 5x and are now on our 6th. Reasons include: neurologist leaves practice and moves elsewhere. Neurologist retires. Switch neurologist until they find one who specifically treats my daughter type of seizures. (Not every seizure causes a person to fall to the floor and shake.)

My thoughts

  • Keep a Journal
  • Be persistent - assertive NOT aggressive
  • You are your loved ones ( child ) voice - do your research
  • Write down 5 questions you want to ask at appointment, no question is dumb
  • Make sure you are being heard but, be polite
  • Take notes at appointments
  • Always ask about SUDEP and how it could affect your loved one. The professionals don't just tell you , you must ask , every appointment!!

Finally, It can be frustrating and overwhelming. It's important to stay informed and up to date. I hope that my parent/caregiver content I provided helps you navigate whatever your family is dealing with.

Signed, Lorrie
Take the time to do your own research about Epilepsy

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