I learned a good lesson this month. We have waited for 5 years to see a Neurologist. All along we were told Trina would never see a Neurologist because Medi-cal doesn’t cover that expense. Amazing, right. She has a brain injury and so she CAN’T see a specialist for that. So, we moved on. Then, Trina started grinding her teeth in an extreme way. We couldn’t stop it. I read that Botox is given to anoxic brain injury patients (in the temple) and it stops the grinding. I told her regular Doc and he sent us to a Neurologist yesterday in Redding. WOW I thought. I should make a list of questions for him to make the best of this appt. We went in with high expectations for some answers and maybe even a brain scan to see if there has been ANY improvement. Well, my hubby had low expectations and I am the one with high expectations to be honest.
OK – First, this Neurologist comes in – No smile, no greeting and very little, if at all, eye contact. He starts with Why are you here. He asks about the history of Trina’s injury. We talk about the anorexia, some of the bad habits months before her seizures, the seizures that couldn’t be stopped – hence her brain going a long time without oxygen, her coma, being in a sub-acute for 1 year, no cognition except similar to a baby of 6 months old….all of this conversation takes place. He then asks us IF SHE CAN DRIVE? And he orders a CT scan where the patient has to cooperate by laying on a table on their own when Trina would have to be hospitalized and sedated for such a test. I mean REALLY – this guy has a license. To say I was angry does not even begin to describe what happened in that room. A child with zero understanding of her medical condition could have done better than this guy. I am being polite not to mention his name but I did call his office and tell him how unhappy we were and that we will not be back.
I do not like to share negative stuff, but this really got me so had to vent a little. The moral of the story is that we will just continue to enjoy Trina daily right where she is at and realize that we are alone in this. Because she is an anomaly – no doctors really get it. To see her for 10 min and not listen to the parents (I even bring video taping of her other behaviors to SHOW what a 24 hour time frame looks like) is usually how it unfolds. We will continue to use our brains to do our personal research and help her in the best way we can…that seems to be the healthiest approach.
I have to say I do wish “the system” allowed for doctors to still show they care and partner with you for health rather than having so much worry about liability and seeing so many patients that you become like cattle as you come and go. My hope meter is down regarding seeing doctors but my hope meter is always up as I trust God and I trust us to do the right thing.
Blessings to all and write again soon. Thanks for checking in!!
Trina’s Mom, Sandy