When Kmarion turned 7months old. His eyes started crossing real bad for three days straight. I'm talking totally crossed. But they stopped crossing by the time we went to his neurologist. I guess the brain just have a mind of it's own. But on that visit is when he decided that it was time for another EEG.

For those who are wondering what is an EEG and why?

Electroencephalogram (EEG)

An electroencephalogram (EEG) is a test that measures and records the electrical activity of your brain. Special sensors (electrodes ) are attached to your head and hooked by wires to a computer. The computer records your brain's electrical activity on the screen or on paper as wavy lines. Certain conditions, such as seizures, can be seen by the changes in the normal pattern of the brain's electrical activity.

Why It Is Done

An electroencephalogram (EEG) may be done to:

• Diagnose epilepsy and see what type of seizures are occurring. EEG is the most useful and important test in confirming a diagnosis of epilepsy. 

Definition found at: 

http://www.webmd.com/epilepsy/electroencephalogram-eeg-21508

Imagine of an EEG

This shows an EEG taken from a 5 month old baby girl who had infantile spasms. The EEG shows hypsarrhythmia. It is very high voltage, has spikes which arise from more than one area and has “slow” activity - waves which take some time to go up and down, unlike spikes which jump up and down very quickly.

http://www.medscape.com/content/2003/00/45/85/458594/art-sin458594.fig22.gif  

Needless to say three months after the EEG they determined that there is no estimated date for when his spasms/seizures and when they will completely go away. But at ten months they started a new medicine called Prednisolone. I had to stay at the hospital with him for three days while the nurses taught me how to give this hormone injection. And yes it is a natural steroid that blew him up in two days. He looked like someone else baby.  I had to do research to find out more information about this drug before giving it to my 10 month old baby.

Hormonal treatments with Tetracosactide or Prednisolone

In 1958, some doctors discovered an injection which would often stop the spasms. This injection made the infant produce more natural steroid than is usual. This injection tetracosactide 

View more information at: 

http://www.infantile-spasms.org/infantile_spasms.htm

Once he turned 4months old and they finally found a medicine that they thought would work. The spasms went away for six days. I was so happy and thought the worst was finally over. He started them right back up. In the course of a week, he was having anywhere from 60 til 70 spasms a day. They delayed his development and he could no longer hold his head up. 

He caught RSV (respiratory syncytial virus) and it made him sick for six weeks straight. He could not keep anything down. I went back to his pediatrician. She said, "don't worry he is still getting his medicine in his system." But it just did not seem that way to me. Sure enough, the spasms were out of control. I could not leave my house without worrying about him having a grandmal seizure or a cluster of spasms. He had to go back to the hospital and stay for another week. I was at Children's Hospital every other week. Its just sad when security knows you by name. 

All of the new information led me to do more research on his diagnoses. I read almost every article that I could read on infantile spasms. As I tried to have a better understanding on how to deal with his rare seizure disorder.

What are Infantile Spasms?

"An infantile spasm (IS) is a specific type of seizure seen in an epilepsy syndrome of infancy and childhood known as West Syndrome. West Syndrome is characterized by infantile spasms, developmental regression, and a specific pattern on electroencephalography (EEG) testing called hypsarrhythmia (chaotic brain waves). The onset of infantile spasms is usually in the first year of life, typically between 4-8 months. The seizures primarily consist of a sudden bending forward of the body with stiffening of the arms and legs; some children arch their backs as they extend their arms and legs. Spasms tend to occur upon awakening or after feeding, and often occur in clusters of up to 100 spasms at a time. Infants may have dozens of clusters and several hundred spasms per day. Infantile spasms usually stop by age five, but may be replaced by other seizure types. Many underlying disorders, such as birth injury, metabolic disorders, and genetic disorders can give rise to spasms, making it important to identify the underlying cause. In some children, no cause can be found."

Is there any treatment?

"Treatment with corticosteroids such as prednisone is standard, although serious side effects can occur. Several newer antiepileptic medications, such as topiramate may ease some symptoms. Some children have spasms as the result of brain lesions, and surgical removal of these lesions may result in improvement."

What is the prognosis?

"The prognosis for children with IS is dependent on the underlying causes of the seizures. The intellectual prognosis for children with IS is generally poor because many babies with IS have neurological impairment prior to the onset of spasms. Spasms usually resolve by mid-childhood, but more than half of the children with IS will develop other types of seizures. There appears to be a close relationship between IS and Lennox-Gastaut Syndrome, an epileptic disorder of later childhood."

View this information at:
http://www.ninds.nih.gov/disorders/infantilespasms/infantilespasms.htm

They started him on a slew of medicines. He left the hospital on 3ml of phenobarbital and a whole packet of vigabatrin. His vigabatrin had to be shipped from Canada to my house because they do not make vigabatrin at any pharmacy in America. The neurologist explained to me how it is actually illegal in the U.S. I had to join this SHARE program along with his neurologist in order to receive the medicine. The people from the pharmaceutical  company and SHARE program called at least twice a week to check on his progress. I really appreciated them for that. Because I felt like they understood what I was going through. No one can tell you how it feels to watch your baby have seizures without knowing what the outcome will be.

Within that week of him returning home. I had never seen a baby have so many seizures. He would be lost in a zone every time they started. But I started to notice that they went from two minutes to as long as six minutes. When he had another grandmal I instantly rushed him back to the hospital in that same week. This time they kept him longer. They hooked him up to an EEG machine and video taped him. This time they finally seen what I was talking about. I still remember when the lady was hooking the wires up to his head. We had to run to the room so they could start recording as he had a cluster of seizures. This time lasting thirteen minutes. Who ever thought that a baby could have a seizure for so long that it gave off an odor. As if it smelled like his brain was frying and there was nothing that I could do about it. When the doctor first said, "you will start to smell the seizures." I thought he was totally crazy for even saying something like that. But he was telling the honest truth. My baby was suffering...        

Once I got to the hospital I was so frantic that I parked my car on the side walk in the the ER entrance. I ran in and the nurses helped me back to the room where my sister Kim and my baby was. They sent this young looking doctor in who kept asking me the same questions, "WHAT HAPPENED?" I explained it to her until I was about blue in the face. My sister finally left and this doctor just kept on with her same questioned. Finally, she said, "if he had a seizure, he would of turned his head to the right." I quickly responded with, "I work in a nursing home and I see people have seizures all the time." So I knew she got the point after that. Unfortunately, that was not the case. She tried to send me home with my baby that just had a grandmal seizure. But I kept it together and told her, "to send me in another doctor." The next doctor was very nice and she started repeating the events that I told the other doctor. At that moment, he started with throwing his arms and grunting. Then I clearly let her know that's how it started before. I picked him up from his car seat when he instantly SHAKING AGAIN! She looked like she had seen a ghost. She sat on the hospital bed in front of me and just stared at him. I started screaming at her, "IS THIS A SEIZURE, IS THIS A SEIZURE?" She jumped up and ran out the room. A whole bunch of doctors and nurses ran in the room grabbed him out my arms and starting running with him in the hallway. It looked like an episode of ER but there were no actors. This was my reality and it made me even more confused. Because they said "they don't know what's wrong with my baby." He kept on having clusters of seizures back to back without a way to stop them. I instantly called his dad and he was on his way to the hospital along with everyone close to me. They tested him for everything under the sun within the next following days. From what I can remember, he had an MRI, CAT SCAN, SPINAL TAP, and an EEG done. They tried a lot of different medicines on him within the course of 72 hours. Nothing was seeming to work. Then they sent him home with a diagnoses of THEY DON'T KNOW WHAT'S WRONG???

LIFE WITH INFANTILE SPASMS

My baby boy Kmarion Colvin was born on August 17, 2010. He was 6lbs and 15oz and 21inches long. He was a start to a new beginning for me and his dad. I have two other children at the time Kaaliyah and Kaalil Johnson ages were 11 and 9 years old. At six weeks old my baby started having focal seizures. At the time I did not know when he stared off to the side and would not look back for a few seconds that it was a focal seizure. His pediatrician told me, "baby eyes are not focused at six weeks old." But in my heart I knew something was wrong. Cause my baby would follow me with his eyes from across the room. A few days before he initially turned three months old. He started throwing his arms out to the side and grunting at the same time. The pediatrician told me, "he is just straining from the breast milk." In my heart I still knew that something was wrong. On November 13, 2010 my daughter ran into my bedroom and screamed, " MOM! THE BABY IS SHAKING! She said it over and over with this great look of fear in her eyes. I grabbed him from her but he just looked real sleepy to me and he was not shaking. I questioned her over and over. She said, "she was just holding him and he started shaking on her chest." That was at 11:00am, I sat next to him all day and he was just still sleepy. At 6:30pm I told her,"I'm sitting him in his bouncer watch him until I get out the shower." As soon as I walked towards the bathroom I heard screaming again. I hurried and turned around. Then I seen MY BABY SHAKING with both his arms stretched out and his head was turned to the left. I grabbed his head and started calling his name KMARION! But every time I touched him he would go deeper into his grandmal seizure. I instantly felt like my heart was crashing cause I though my baby was dying right before my eyes. I will never forget that moment. I felt so helpless cause I thought that I could not save him. I can't even speak about the events without crying. I told my daughter to call 911 and grab them some clothes. I called everyone close to me, my sister Kim is a nurse she automatically rushed to the hospital to meet the ambulance. I had to drop my other kids off with family members...