The four tests performed on me to confirm the diagnosis of KLS: MRI Brain with and without contrast, MR Perfusion, Functional MRI with MD, MR Spectroscopy. These tests have been performed on other KLS patients around the world.
The following brain scan explanation was written by my mom. Alanna has had four brain scans in total. Two were the common MRI scans that showed no problems. But it was the fMRIs (functional MRI) and other scans that showed incredible results some of which were not shared in the documentary but also very valuable to KLS confirmation. I want to get this information out because I believe it will help a lot of parents confused by the change in their childrens behaviors. And like the doctor told me, there is no way Alanna can help it. This illness and these behaviors cannot be faked. There is an *organic problem in the brain. The good news is, it is not structural or permanent. My husband and I were so relieved to hear our daughter had KLS because it was a confirmation for us that this shall go away one day. I was so afraid at the time we were going to lose her to this illness forever.
The changes the fMRI recorded were staggering (I believe even for the doctor to witness). These brain scans were done one week apart. The first was when she was healthy. As a matter of fact, she was supposed to have had her sick scan that day as she had been in a three week long episode but woke up on the day she had the scan. So she had only been awake for about ten hours. They tested her speech and language and found her to be left brained. She showed a high degree of function. She processes her hearing through both her right and left temporal lobes. All signs of high degree of function. No problems. The doctor actually said that her brain was the healthiest looking brain he’d seen in a long time. (That comment brought tears to my eyes, tears of joy and relief because I knew something was terribly wrong when she was sick). They also tested blood flow to the brain and metabolites (chemicals) in the brain. All functioning was normal.
After that three hour scan, Alanna was drained and fell back into an episode that night. She had been in the episode for nine days when they decided to do the sick scan. The results were amazing. Alanna’s left brain was basically shut down. She could not process the speech and language part of the test through her left brain. The doctor told us that when the test is given a second time, there is usually a higher degree of function because it is a little easier for them as they have already done it. But for Alanna, she could not process the information. Interestingly, her right brain showed a little bit of functioning. The functioning abilities in her temporal lobes (hearing abilities) were also diminished. The blood flow to the brain was decreased and the metabolites were increased which the doctor said would cause a significant impact. All four of these tests confirmed the diagnosis of KLS as there have been these kinds of tests done on other KLS patients around the world with the same results. Although from my understanding, these tests had never been done on the same patient at the same time to include the functioning MRIs.
It is so much easier to deal with this illness when you know there is scientific evidence proving the cause of behavioral change. Unfortunately, my daughter was misdiagnosed, mistreated, and misunderstood for a very long time. And I’m sure my daughter isn’t the only child misunderstood. I am sure there are others that are forgotten out in the world suffering with this horrible illness and it breaks my heart.
I hope this information helps you move forward.