Friday, January 15, 2010

Things I wasn't expecting....

Periventricular Leukomalacia of the parietal and occipital lobes
Thinning of the posterial body of the corpus callosum
Increased T2 hyperintensity within the periventricular white matter.........
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Words I had not expected to read when I picked up Faith's medical records. Have you ever had that feeling.....like you try so hard to learn about your child's condition and then another thing that you didn't know about pops up?
Well, that's me, today. I got out to the car and started reading, as I always do, and I see these NEW names of things that I didn't know about.
This is what I mean about having access to our medical records. How do you know what to ask if you can't see what they see or they don't explain what things mean. If I hadn't requested specific records (ie: MRI findings besides just her MRI results) I would have never known those things.
We knew that Faith had severe white matter volume loss, we knew that her ventricles were enlarged because of the loss of white matter, we knew that the sagittal sinus area was abnormal due to the blood clot. But no one ever gave us names for those things or other things that had happened.
Some of these new names I don't know anything about and despite significant googling I still have limited information. The big one is the thinning of the corpus callosum. If anyone out there is familiar with this condition let me know, OK!
I sat in the car and had a good cry, as I read. Reading medical records of your child with severe brain damage is REALLY painful. Even when you know A LOT about it!
If you have never requested entire medical records from say.... your neurologist..... YOU SHOULD. It gives you a different perspective and often info that you would have otherwise never known! My favorite reads were the doctor's office notes.....many comments about my intense questioning to multiple doctors. Like that's a bad thing! Another favorite was from the oncology office. (I have had a lot of problems with them, as stated in my previous post) In their office notes it was recorded that "mother was highly upset about the time waiting to see the doctor, time it took to get coordination for treatment at Duke and having to see different doctors every visit." YES... I was upset that I had to wait over 4 hours to see the frickin' doctor! YES....I was upset that after dozens of phone calls to the office, your coordinator did not mail the required paperwork to Medicaid after telling me she did! YES.... I do get upset when I have to explain to the tenth doctor about all of Faith's conditions because they don't read her chart before seeing her and none of the previous doctors bothered to explain it to them! CAN YOU IMAGINE?

5 comments:

Katy said...

The corpus callosum is the part of the brain that lets the two sides talk to each other. Many, many CP kids have it--the assumption being that the two sides of their brains don't communicate as well as they should. My uber-Googling has also told me, however, that enlarged ventricles can obscure the view of the corpus callosum. So. . . maybe it's thin or maybe it's just hard to see? Either way, plenty of kids have thin CC or even absent ones, and that, in and of itself isn't a huge deal. If you dont' have one at all you may have some learning disabilities or balance problems. I'm sure a doctor could tell you more, but that's the information I dug up on the topic.

Enough info?

Carla said...

Litle Man does not have a corpus callosum. I found this out after snooping through his binder in the NICU when the nurses were not looking:) I sat there & cried about it & then asked a nurse about it. SHe said some kids have them & some don't but you can't tell until they are scanned. She then added that Albert Einstein didn't have one either. I try not to sweat it since the range of issues with not having one can range from "nothing wrong" to "something severe". This is real vague but its all I know about a CC:)

Amber said...

I'm more hung up on the private notes about mom....I can only imagine what Grace's would say. "mom cries repeatedly in office....mom doesn't trust physicians course of treatment.." That's kinda madness to me!
Hang in there mama...when I learn something new...I try to remember that the words on the paper or lack of genetic make up...doesn't change who she is.

Beverly said...

so sorry. i know reading things in files be it dr or therapies or school can some times be ugly. I also hate when they mention something about Mom, like Mom questions this or that or Mom says....

therextras said...

I don't have to imagine. It.is.possible that the notes about you, "Mom" are not critical, and might be helpful within the office - staff might not be able change procedure unless there is documentation that a mother complained. No matter the reason, no need to change your advocacy behavior. Wishing the documentation did not cause you so much personal pain. Oh, for the failures of physicians for explaining themselves. But when they save a child's life, the record speaks for itself.
Barbara