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?
$30 bucks worth of records on left.....FREE records on right!
