About Garion and his death caused by Chiari Malformation, and yet another doctor whom told a parent that their sons Chiari was nothing to worry about... Please visit Ehrick Garions Act, created by Kolya Lynne Smith and show your support! She is in need of all of the support she can get!! Written by Cecily Dawn Barber - Garions mother Garion was born in January of 2000. Shortly after bringing him home from the hospital, we began noticing that sometimes both of his eyes would wander to the far right corners and seem to stick there, sometimes for up to a minute. Knowing that it takes a bit of time for a babys eye muscles to fully develop, we assumed that was the issue. We mentioned it to the pediatrician, and he wasnt concerned, so we didnt do anything about it for the next several months. When he was 16 months old, I brought it to the pediatricians attention again. It seemed that the episodes were more frequent, and I knew by this point that it certainly wasnt normal. The pediatrician sent us to an eye specialist to be seen. That doctor said he saw nothing in his eyes that should be causing it so he sent us to have an MRI done. He wanted to rule out any growth on the brain that may be causing it. So, we had the MRI done and the results from it were normal. The eye doctor said there was no reason for it shown on the MRI, so he sent us to see a pediatric neurologist. The neurologist did an EEG which showed abnormal brain activity in a localized part of Garions brain. He was having focal seizures and the seizure activity was only effecting the part of the brain that controlled his eyes. The neurologist kept commenting on how odd it was that he was having this issue without any other complications. He didnt hurt, he was alert when it was happening, he would even compensate for it. His eyes would go right and if you were talking to him or he was playing with something, he would turn his head so he could still see what he was looking at. He started taking medication for his focal seizures at 18 months old. As he grew, his dosage was adjusted for his size, a few more EEG tests showed that he was still having the abnormal activity, and the neurologists (we started seeing a new one in 2002 after moving to Orlando, FL) was always stumped at the fact that these were happening yet there were no other complications with it. In late 2006, Garion started making statements about things that I didnt think much about at first. Mommy, my hands are tingling., Mommy, my head really hurts., Mommy, I see two of everything. These didnt usually come very often and not all together, so I didnt put them together as being related. They were a complaint from a little boy and I took care of them as individual occurrences. At our appointment with the neurologist in early 2007, I mentioned to the doctor that Garion had been complaining about headaches, double vision, and tingling in his hands. It had been about 2 years since his last EEG and the MRI at 16 months old was the only one he had ever had. The doctor sent us to have an MRI done on March 29, 2007. I remember going in and sitting him on the table, the nurse talking to him and telling him what he could expect. He asked if I would stay with him. He was such a brave little guy, but just wanted to know that he wouldnt be by himself. He finished the test and we went home. Four weeks passed and I heard nothing about results from the test. I assumed everything was fine because I heard nothing. I finally called to get the results, but didnt get a call back. Called again two weeks later...still no call back. Three months after the test, we had an appointment. I had still never heard the results of the MRI, so I asked while we were there. This was the conversation: I never got any information about the MRI Garion had in March. Can you tell me anything? He flipped pages in Garions file, stopped on a page and began scanning it, and then said, Looks good. He paused. Then he said, The only abnormality at all on there is that his cerebellum comes down just a little further than we consider normal, but it isnt a concern. The sentence, the tone, his non-chalant attitude all made it sound like this was common and no big deal. To be certain, I then said, Is this something that we should worry about?. I point blank asked him!! And he said no. No. Nine months later, in the same amount of time that I carried him within me-developing into this wonderful little baby boy that I love more than life- exactly one year to the day after that MRI, my little boy was gone. He passed away peacefully in his sleep on March 29, 2008. It would be 4 months before we had an answer to why he had passed. Every time that we spoke with the medical examiner, she would tell us how healthy he was and how she had not found reason. Until one day she called and asked if we had ever heard of Arnold Chiari Malformation Type 1. We told her no. She was surprised. You werent told of the abnormality of Garions brain? I told her of the conversation with the neurologist and she was surprised. She said then that she was sure that because of the scarring on his brain tissue, Garions passing was caused by sleep apnea that was caused by the Chiari. His cerebral tonsils had been rubbing the skull where they were herniated. In my sons medical records, that paper the doctor was reading from in his office that day says DX: Arnold Chiari Malformation Type 1. That info wasnt given to me. When I received that info- four months after he died -I began researching. The only two documented cases of death in children due to Type 1 that I could find online at the time were due to sleep apnea caused by Chiari. If I had that info 9 months earlier, I could have requested the sleep study. The doctor should have known to request the sleep study as soon as it was found. After I began researching, I found that so many of the odd things he would sometimes say, made sense! They were due to the Chiari. He used to tell us that he had never slept. Come to find out, the Chiari will cause you to think you hadnt slept at night due to a few different reason. One of which is very vivid dreams. He was super sensitive to light and loud sounds. The list goes on and on...
Posted on: Sun, 07 Sep 2014 23:05:04 +0000
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