Karen Flummerfelt, MS – Brain Blogger http://brainblogger.com Health and Science Blog Covering Brain Topics Wed, 30 May 2018 15:00:03 +0000 en-US hourly 1 https://wordpress.org/?v=4.9.6 My Nephew and his Brain, Part 4 – Their Life Today http://brainblogger.com/2010/03/18/my-nephew-and-his-brain-part-4-their-life-today/ http://brainblogger.com/2010/03/18/my-nephew-and-his-brain-part-4-their-life-today/#comments Thu, 18 Mar 2010 12:00:54 +0000 http://brainblogger.com/?p=3786 Continued from Part 3. After the surgery we were hopeful, that with a few limitations on his left side, my nephew would have a fairly normal life. Unfortunately, this was not to be. The faulty electrical impulses that had caused his seizures had migrated to the left lobe and a few days after surgery the seizures returned. It was true that they were milder than they had been before; he no longer stopped breathing when he had them, so some good had definitely come out of his surgery experience. They weren’t gone, however, so he spent another month in the hospital as the doctors tried a staggering amount of drug cocktails on him trying to figure out the best combination for controlling his seizures. None of them worked perfectly, though, so even today at the age of seven, he still has multiple seizures a day.

Under that kind of duress, his brain hasn’t been able to develop and he is pretty much an infant in a little boy’s body. He can’t walk or talk, and he has myriad medical problems due to his developmental difficulties. He has a problem with coughing, so mucus builds up in his lungs and he has been hospitalized many times for pneumonia. He has had hydrocephalus and now has a shunt that moves cerebral-spinal fluid from his head into his digestive tract. Because he has trouble swallowing, he is fed through a tube with a liquid diet and his digestive troubles have landed him in the hospital at least twice. He also has more doctors and specialists than an HMO, and his daily medication regimen keeps his local pharmacy in business.

But, in spite of everything, he has the most beautiful smile in the whole wide world, and even though he is limited in how much can tell us, that smile tells us when he is having fun and enjoying life. We try to do everything we can to coax out that smile, and we have found that adventures with his family can make it appear faster than anything. So, my nephew has been to Walt Disney World, Canada, the Bahamas, Mexico, the Grand Canyon, and just this last summer, Australia, in addition to his numerous trips all over the country to visit relatives. And, it is our sincere hope that we will be able to have many, many more adventures with him for the rest of his life because this kid is truly one of a kind.

Editor’s note: this is the fourth and last part of a series offered by Flummerfelt. Read parts one, two, and three.

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My Nephew and his Brain, Part 3 – Try to Work Out their Troubles http://brainblogger.com/2010/03/17/my-nephew-and-his-brain-part-3-try-to-work-out-their-troubles/ http://brainblogger.com/2010/03/17/my-nephew-and-his-brain-part-3-try-to-work-out-their-troubles/#comments Wed, 17 Mar 2010 12:00:39 +0000 http://brainblogger.com/?p=3784 Continued from Part 2. After we had been transferred to the large university hospital, the doctors decided to delve more deeply into the specifics of my nephew’s brain malformation. The MRIs had told us some things, but not everything, so they scheduled him for a Positron Emission Tomograph, commonly known as a PET-scan. A PET-scan uses radioactivity coupled with a biologically-active molecule and after injection, the biological molecule congregates in the area of interest, in our case, my nephew’s brain. The radioactivity attached to the biological molecule then starts letting its extra neutrons go in a process called decay. This decay, through a very complicated process, is read by the PET scanner and brain activity can be assessed. What this very comprehensive scan told the doctors and subsequently us was that the right side of my nephew’s brain couldn’t send electrical signals properly and this aberrant electrical activity was causing the seizures. Unfortunately, the only way to stop the activity was to take out whatever in the right hemisphere was giving the wonky signals, so my nephew, at the age of four months, was scheduled for brain surgery.

The surgery was on a Tuesday, and all the family we could gather waited with us in the hospital waiting room while the twelve-hour surgery progressed. We received periodic updates from the operating room telling us he was doing well, and after a very-long day, the surgeon came out and told us that it had been successful; they had removed the malformed part of his brain. The unexpected part, however, was that the malformation had not been restricted to a discreet part of the right hemisphere, so instead of taking a section, they ultimately decided to take out the entire hemisphere. But, the doctors were hopeful that this would curtail the seizures because the left side of the brain appeared normal, and my nephew was resting comfortably in the pediatric intensive car unit upstairs, so we were thankful.

After the surgery, they thoroughly examined the hemisphere they had taken out, and at last, we knew why the malformation had happened. In my nephew’s case, a non-neuronal cell had not followed the chemical roadmap laid out for it during development and so had ended up in the wrong place, namely the brain, which is supposed to be made up exclusively of neurological tissue. It had started dividing and after a time had developed a cyst in the right hemisphere, which in turn forced the neuronal tissue in the brain to develop around it. This cyst prevented the normal electrical patterns and had caused the seizures. Because this cyst had apparently developed early in my nephew’s brain development, the whole hemisphere had formed around it and had been disrupted. But now, the hemisphere was gone, and we looked to a new future for my nephew.

Editor’s note: this the third of a four-part series offered by Flummerfelt. Tomorrow, we will reveal the part four. Read parts one and two.

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My Nephew and his Brain, Part 2 – Revealed to be Complicated http://brainblogger.com/2010/03/16/my-nephew-and-his-brain-part-2-revealed-to-be-complicated/ http://brainblogger.com/2010/03/16/my-nephew-and-his-brain-part-2-revealed-to-be-complicated/#comments Tue, 16 Mar 2010 12:00:26 +0000 http://brainblogger.com/?p=3780 Continued from Part 1. After we had arrived at the new hospital and my nephew had been placed into the Pediatric ICU (PICU), the doctors started running more tests, and in conjunction with what the ER doctor had found out, my nephew was diagnosed with a seizure disorder or, as it is more commonly known, epilepsy. Epilepsy is defined as a “brain disorder characterized predominantly by recurrent and unpredictable interruptions of normal brain function” and in most cases, this interruption is caused by either an over-excitation or under-excitation of the neurons in the brain. After electroencephalography (EEG) was performed and analyzed, this aberrant electrical brain activity was what appeared to be happening to my nephew, so the doctors began to prescribe medications that are typically given to children with seizure disorders. The problem with my nephew, however, was that from the MRI that had been performed on him at this point, it was evident that there was significant brain malformation in his right hemisphere, and these medications would only be treating the symptoms and not the cause. In spite of this, though, the medications met with some success in controlling the seizures, and after a few days to make sure that my four-month old nephew was receiving the proper dose for his small self and was tolerating his medications, he was sent home.

Things went well for a couple of days, but then the seizures returned, and this time, more alarmingly, they intensified and caused my nephew to stop breathing. My sister and her husband rushed him back to the hospital, and after another few days in the hospital, it was decided that due to his seizure activity and the underlying brain malformation that my nephew needed more sophisticated and specialized care than he could receive at the hospital he was currently admitted to. After some calling around to various area hospitals and medical centers, the doctors finally found a place for him at a local university hospital that fortunately for us and my nephew is one of the most-highly ranked hospitals in the nation for the quality of its care and the quality of its doctors. He was transferred to this hospital, and in doing so gained several world-class pediatric neurologists who would now be focused on trying to alleviate his seizure condition caused by his complicated brain. We were very hopeful, and now it was up to these doctors to help my nephew.

Editor’s note: this the second of a four-part series offered by Flummerfelt. For the remainder of this week, each day we will reveal parts three and four. Read part one.


Fisher RS, van Emde Boas W, Blume W, Elger C, Genton P, Lee P, & Engel J Jr (2005). Epileptic seizures and epilepsy: definitions proposed by the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE). Epilepsia, 46 (4), 470-2 PMID: 15816939

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My Nephew and his Brain, Part 1 – Introduction http://brainblogger.com/2010/03/15/my-nephew-and-his-brain-part-1-introduction/ http://brainblogger.com/2010/03/15/my-nephew-and-his-brain-part-1-introduction/#comments Mon, 15 Mar 2010 12:00:34 +0000 http://brainblogger.com/?p=3778 As a person who believes in full disclosure, I feel that I should say from the outset that I am not a neurologist. I am a microbiologist, and generally speaking, even though I am a science-type of person, I was never very interested in neurology. All that changed, however, when my nephew was born. Well, it didn’t happen exactly the moment he was born; it took a while for us to learn how unique he really was. I guess it is probably best if I start at the beginning.

My nephew was born in August of 2002, and when he was born, he seemed like a normal, healthy baby boy. He did all of the things that newborns are supposed to do like eat, sleep, dirty diapers and keep his parents up all night, and as a couple of months progressed, he started hitting all of his baby milestones like having a little bit of head control and smiling. By the time he was three months, however, he had started having these quirky little movements every now and then, which to us looked like he was constantly being startled by things. My sister and her husband took him to his pediatrician, but she said they were “normal baby movements” and that we shouldn’t worry. We tried to take her advice, but the strange movements continued, and my sister grew concerned enough to take him to the local emergency room.

It was at this emergency room that we started to discover that my nephew wasn’t quite as healthy as we had supposed him to be. The emergency room doctor was very, very good, and he recognized right away that the supposed “normal baby movements” were in fact not normal, and he further surmised that they were neurologically-based. He ordered a CAT-scan and a spinal tap, and after the results came in, he told us the news, or as much as he could tell us based on the limited tests that he had done. From the CAT-scan, it was clear to him that there was something very wrong with my nephew’s brain, and my nephew needed to be admitted to the hospital. The hospital we were at didn’t have a pediatric ward, so the ER doctor arranged for us to be transferred to a nearby hospital for further testing. And it was after we had been transferred and more tests had been run that we found out we had a one-in-a-million baby and it was going to take a lot of doctors and medical care to keep him alive.

Editor’s note: this the first of a four-part series offered by Flummerfelt. For the remainder of this week, each day we will reveal parts two, three, and four.

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