JACKSONVILLE, Fla. (Ivanhoe Newswire) - Falling to the ground at any given moment without having control over their bodies. It's what children with atonic seizures live with every day. For some, removing part of a major organ seems to be the key to ending the dangerous cycle.
At ten months old, Cole started suffering from atonic seizures. He would wear a helmet to protect himself from the condition that causes him to fall without warning.
Eight-year-old Aliyah Walker had the seizures too. As many as six frightening episodes a day.
"Where she would just walk normally, and then she would fall," Latasha Mckeiver, Aliyah's mom, told Ivanhoe.
They were caused by an inflammatory disease, deteriorating the left side of her brain and its function.
"Over time, some of the function of the brain moved elsewhere, probably to the right side of the brain," Philipp R. Aldana, M.D., FAAP, assistant professor of neurosurgery and pediatrics and chief of the division of pediatric neurosurgery at the University of Florida-HSC in Jacksonville, said.
When no medicine helped Aliyah, there was only one option.
"I was like no, they told me they were going to have to disconnect the left side of her brain, remove it," Latasha said.
During her hemispherotomy, doctors removed the part of the brain triggering the seizures and cut off the entire left brain.
"We disconnected the fibers that go down to the spinal cord, and disconnected the fibers that go to the other side of the brain," Dr. Aldana said.
After surgery, Aliyah had not a single complication. While she has months of therapy ahead to strengthen and improve coordination on her right side, she's seizure-free. After a similar surgery, Cole's seizures are gone too and so is his helmet.
Without the procedure, doctors say Aliyah's severe seizures, weakness and even paralysis would have likely gotten worse. They now believe her seizures are gone for good. In time, her right brain will take over more of her left brain function, and doctors believe she'll go on to have a normal, healthy life.
BACKGROUND: Epilepsy affects more than 300,000 children under the age of 15 as well as 3 million Americans and 50 million people worldwide. Atonic seizures also known as drop attacks, astatic, or akinetic seizures produce an abrupt loss of muscle tone, head drops, loss of posture, or sudden collapse. In some children, only their head suddenly drops. After a few seconds the child recovers, and regains consciousness. Because atonic seizures occur without warning, seizures can result in injuries to the head and face. (Source: www.epilepsyfoundation.org)
LIVING WITH IT: During an atomic seizure a standing or walking child may suddenly pitch forward without demonstrating any protective reflexes. It usually lasts for about 15 seconds. Children who are sitting or lying down may experience head bobbing or rolling. (Source: www.uihealthcare.com)
CAUSES: Epilepsy has no identifiable cause in 50% of patients with the condition. In the other half of patients, the condition may be traced to various factors including; genetic influence, head trauma, medical disorders, dementia, diseases, prenatal injury, and developmental disorders. (Source: www.mayoclinic.com)
CHANGING THE ODDS: Protective headgear, medications, and surgery are common treatments for epilepsy. Most experts recommend that a patient who continues to have seizures after two or more different medication trials should have an evaluation at an epilepsy treatment program. When tests consistently point to a specific area of the brain where the seizures begin, curative surgery is performed. With surgery the doctors will disconnect part of the brain depending on what area the seizures are being caused from. There are five main steps to a temporal lobectomy, and the surgery generally takes approximately 4 hours. Patients typically can resume their normal activities after a month. (Source: www.mayfieldclinic.com)
Dr. Phillp Aldana, Pediatric Neurosurgeon, discusses removing part of the brain that stops seizures.
Tell me about Aliyah.
Dr. Aldana: She is a young girl who early on in life started to have seizures that were the result of a process that was affecting the left side of her brain. She contracted a form of encephalitis called Rasmussen's encephalitis.
Where would she have gotten that?
Dr. Aldana: Rasmussen's, unlike other the other kinds of encephalitis, is not the infectious type. The cause of is not well known, it. What this disease does is it causes inflammation of the whole brain on one side,. Gradually that half of her brain atrophied and she started to have progressively worsening seizures to the point where medicine could not control the seizures.
So you made the decision to do something radical but something was already happening in her brain in terms of function transferring right?
Dr. Aldana: Yes, she had weakness on the right side of her body which was an effect of the process that was going on the left half of her brain. Over time some of the function of the left side of her brain moved elsewhere, probably to the right side of her brain. She did not have full function of the right side of her body but she was able to move her body on that side as well as speak, functions which you typically would associate with the left side of the brain.
What did you decide to do and why?
Dr. Aldana: We have specialists that deal with the evaluation of patients for epilepsy surgery. The important specialists in this epilepsy evaluation team are the epilepsy neurologist and neurosurgeon who are quite experienced with these types of diseases. The purpose of the team is to evaluate children for the surgical treatment of epilepsy when their medicines cannot cut down on the number of seizures effectively. Aliyah went through this surgical epilepsy evaluation.
One of the ways to treat epilepsy with surgery is with a disconnection procedure. This procedure is one in which you isolate the part of the brain that's causing seizures from the rest of the brain so the seizures don't spread. What we did for Aliyah was we cut out a window in the skull to expose the left half of her brain. We then did several things. We took out this part of the brain called the temporal lobe, which is a known area of the brain that frequently causes seizures. We then went into the hollow part of her brain, and cut out the structure which carries almost all of the fibers that connect the left half to the right half of the brain. In doing this we disconnected the left from the right half of the brain. In addition, we cut part of her brain that supplies fibers that travel down the brain into the spinal cord. By doing all this we disconnected her left half of her brain from the right side and from the rest of the spinal cord.
Is there any downside to this for her?
Dr. Aldana: At this point no, no there's no downside for her. When you choose the right patient to do this procedure on they do very well and their seizures are cured.
Somebody might say this is sounds pretty extreme.
Dr. Aldana: On the surface it sounds like it but if you take all of the factors into consideration, it makes sense. That left side of her brain wasn't functioning much anyway and the only function that it was doing was harmful to her. So when you think of that in those terms then it makes sense to disconnect the brain and do away with the seizures.
Do you remember telling her parents and what their reaction was?
Dr. Aldana: It was a lot for them to understand and of course they were skeptical at the start. It took a while for us to convince them that this would help her. The epilepsy neurologist on our team, Dr. Raj Sheth spent a lot of time going over this with the family.
Tell me how this must sound to the parents and what the initial reaction was?
Dr. Aldana: You have to explain it on their terms. I basically told them that there's a part of her brain that's causing seizures and it's not doing her any good. Once they understand that then it's not so difficult to tell them that this part of the brain needs disconnected. You use aids, in this case I used a model brain and I told them exactly what we were going to do. When they understand the problem and why it needs to be treated, then it's easier to convince them that their daughter needed surgery to cure her seizures. Thankfully she is doing well and is seizure free.
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