My son Austin, who had been a totally normal baby up to this point, had his first seizure at four months old. What appeared at first to be a hyper-moro reflex turned into him having more than 12 episodes of his whole body jerking and his eyes open and staring in 12 hours, lead us to believe he was really having seizures. The following day an EEG was performed and indeed he was having seizures. We began mediation that for the next two months seemed to control his seizures and then the seizure pattern changed and he began having more of a tonic/clonic-generalized seizure. Most of Austin’s seizures happen when he is going to sleep, during sleep and upon waking up in the morning. Because of this he cannot sleep alone or he would try to get to someone and hurt himself, therefore he has to sleep with a member of our family at all times.
Since four months of age Austin has never been completely controlled and has been on approximately 10 different medications, including ACTH injections daily at nine months old for 30 days, even with all of these we have not been able to help him be completely seizure free. Many of these medications are given together in hopes of control. Currently, Austin takes three different seizure medications and recently had to weaning off of one due to the side effects that caused a severe tremor in his hands, much like that of a Parkinson’s patient, this tremor was preventing him from performing normal tasks such as feeding himself and getting dressed. Austin has had up to as many as 10-15 seizures in a day and currently is having anywhere from 1-8 per day. His seizures typically last around 30sec. to 3 minutes, causing total body shaking, eyes opening staring or eye fluttering, gurgling noises, and sometimes he tries to climb out of bed.
In 2001, Austin had a Vagus Nerve Stimulator (VNS) placed. The purpose of the VNS is to stimulate the brain counteracting the electrical impulses that the brain is giving off causing seizures and hoping to stop the seizure from either happening at all or decreasing the severity of the seizure. For Austin the VNS is on a setting called rapid cycle, which means that it is stimulating his brain for 25 seconds than off for 5 seconds than on again continually. The VNS also has the capability to increase the amplitude of the stimulation and stay on for one full minute if a seizure is seen by family, we do this by swiping across his chest with a high powered magnet where the VNS is located. Because, the VNS is ran by a battery it only lasts about 4-5 years requiring a replacement of the battery pack.
So far, Austin has had three surgeries just for his VNS since it was placed in 2001. Austin started showing development delays around the age of two and has continued to have delays throughout his life. He has speech, fine motor, and academic delays; he has been classified as Intellectually Disabled. He is 20 years old and academically functions at about a 4-5 year old and socially about a 12-14 year old. He also has a diagnosis of ADHD and Anxiety, both requiring medications. He also needs medications to help him sleep at night.
Even through all of this Austin is a fun, loving, energetic young man that is loved by all! His favorite thing to do is play his Xbox and he can play just about any game you give him. Austin also participates in special needs sports league and love to play baseball, basketball and soccer. He has lots of friends and it seems like anytime we are out he finds someone he knows. We are so proud of all the accomplishments he has had in his life and look forward to many more!
Jessica was born a beautiful child and developed normally and hit all milestones just like she should until she had her first seizure at 9 months old. Her second and third followed, and in the first year she had 8 seizures. We started her on medication as advised by the doctors, but the seizures continued. Each year the seizures increased in number and severity as well as developing differing types of seizures. By the age of 3 Jessica was no longer developing normally, but starting to decline in her cognitive abilities and the drugs she was on were making the seizures worse not better. She was having long status seizures and then being paralyzed after for hours or days. We took her to the Institutes for the Achievement of Human Potential in Philadelphia to try to reverse the brain damage and get a handle on her seizures. There we learned about cross-lateral patterning, and masking. The patterning helped with her coordination and the masking helped to keep the seizures shorter. but they continued.
At age 5 we took her to UCLA to see if she would be a surgical candidate, but were told the seizures were not localized to one place in the brain. She was on 6 seizure drugs at this time. The doctor’s didn’t know what to tell us as they couldn’t diagnose her with anything other than idiopathic/intractable Epilepsy. Basically that means we don’t know and can’t control it, so sorry. We tried many other non-traditional therapies, some of which helped a little, but most which didn’t help at all. She was eventually diagnosed at 7 1/2 years old with Dravet Syndrome. By this time she was having over 1200 seizures per year, sometimes as many as 30 per day. We travelled to Chicago to see the foremost specialist on Dravet Syndrome, Dr. Laux, and get advice as to what we should do for Jessie. She advised us as to the medications that seem to work the best and we worked to get Jessie on those three or four medications. Jessie has been on 17 anti-epileptic medications and the Ketogenic diet as well as many vitamins and supplements suggested by her doctors. She is now 14 still having daily seizures, although not as many, and functions at a 3 year old level.
Jessie loves to color and paint, do puzzles and matching games, bake cookies and brownies play at the park and watch videos. She loves her brother Matthew and her Grandpa. She has two golden retrievers named Shadow and Pillar and she loves to be with them as much as possible. They are very patient and gentle and allow her to lay all over them. Jessie loves her friends from school and always wants to go play at their houses. She is a pro at the iPad and can learn things on it we haven’t been able to teach her through traditional methods at school. We love having her in our family.
My 9 year old girl miss Hanna Maria was born normal. Then when we went in for her first set of immunizations shots and within 12 hours after getting them, she started having seizures. These started out just in the face but by the next night they were full body seizures (Tonic/Clonic).
Our local ER, that we went to that night, told us: ‘they are face twitches, everyone has these’.
I said: “What? I have never seen anyone with those.”
The next day, she was not any better so I took her to her regular Doctor and he told me same thing, adding what a seizure really would look like (full body). And sure enough, that night, she had the first full body seizure.
By the time we made it to see the Doc that specializes in this kind of stuff (at Primary Children’s Hospital) they said: yes, these are seizures and they are called ‘face seizures’.
At age 6 months, we were having 80 to 90 seizures a day. From age 1, they said she was Developmentally Delayed and by age 3 they said she had CP. At 3 1/2, we found out she also had Scoliosis. She had 2 rods put in her back at age 5. By 6, she got a Vagus Nerve Stimulator, to help with the seizures. With the VNS and 5 meds, we now have only 8 to 15 a day.
We where G-tube fed for awhile, and also had a GJ tube, but in the last year she can not do any kind of feeds, so we are on TPN through a central line.
No matter what life has thrown her way, she is a strong little girl and I would not change my life for anything. I love her so much for she is my whole world.
What an amazing year the Epilepsy Association of Utah has had! With Paint the State Purple 2014, we are relaunching our Seize: the Story series.
We have decided that it was only appropriate to start with a somber story; a story of one of our heroes, Charlee.
Charlee was born January 30, 2008 to Jeff and Catrina Nelson. She was a happy, fun loving, funny, sweet and smart 3 1/2 year old girl. She enjoyed singing, dancing, playing with her brother and sister and loved anyone to read her a hundred books a day. Little did they know the greatest trial of their lives would start on May 20, 2011, when she had her first seizure.
Following that, she had hundreds of tests including: EEG, 2 CT Scans, 3 MRI’s, Spinal tap, skin biopsy, ERG and countless blood tests to find her diagnosis. She had to endure so much pain and suffering but amazed everyone with her strength.
After 21 months of testing and searching for answers, the diagnosis came. Although it is NOT the results they had hoped for, we knew she had a greater mission on the other side. She had a genetic disease called Batten disease. It occurs when a child inherits two copies of the defective gene, one from each parent. Over time, affected children suffer mental impairment, worsening seizures and progressive loss of sight and motor skills. Eventually children with this disease become blind and bed ridden. They will be unable to walk and talk and the disease is always fatal. Charlee’s type of NCL is Late INfantile NCL/CLN2; it begins between the ages of 2 & 4. This form progresses rapidly and ends in death between 8 and 12.
Charlee had the opportunity to meet many members of the Utah state legislature and be one of the faces for cannabis oil legislation in Utah. On March 14, 2014, Charlee was called home; her mission was complete. Just 4 days before she passed, HB105 was officially called Charlee’s law. It may have been to late to help Charlee, but she helped many people to see the importance of having the option to use cannabis oil as a treatment for seizures.
The Nelson family is heart broken as they venture into the next journey in their lives but Charlee will never be forgotten by the Epilepsy Association of Utah and her willingness to help future generations here in Utah.
floor making gurgling noises. After the
EMT’s arrived and we explained what happened they mentioned it might have been
a seizure and we were transferred to the ER.
The next few months would be a nightmare. Addy manifested 4 different types of seizures
which included myoclonic, astatic, absence and tonic clonic. Ironically we had just replaced the
carpeting in our home with hardwood floors.
Her injuries were numerous as she repeatedly fell on those floors and
seized. It’s hard to see your child
covered in bruises, lacerations and with permanent teeth knocked loose. It became necessary to strap her into her
chair during meals and accompany her to the toilet or when using the
stairs. There is no known cause for her
disorder and we were told she may outgrow it, however she continues to decline. Her doctor has diagnosed her with a
combination of two different syndromes which are Doose and Lennox Gastaut. They are both difficult to control and we are
constantly changing medications and treatments to try and stop her seizures. Currently Addy is on three different
medications. Her daytime seizures are
controlled for now but we have never had control of her nocturnal seizures. The side effects of these medications have
caused developmental delays and learning disabilities as well as behavioral
problems. A secondary diagnosis of
Sensory Processing Disorder has also recently popped up. We have tried all kinds of alternative
treatment including chiropractic, homeopathic, acupressure, hypnotherapy,
occupational therapy and brain-linking.
Our next course of action will probably be the Ketogenic diet.
a smile on her face which is a reminder to me of how valiant her spirit
is. She is now seven years old and in the
second grade. She attends a tumbling and
clogging class every week and has a special connection with animals. We are in the process of applying for a
companion/seizure dog for her. The
hardest thing for me as her mother is to continually watch my daughter slip
away. I will never give up hope and I
will try every thing in my power to have her be a normal kid again and come
back to me.
me off the medicine after I stopped having seizures and sent me home.
hallway heading to the office. My mom came and got me and we went to the hospital. Once there, they ran tests and made arrangement for me to go see a Neurologist. Over
the next two weeks I had two more seizures so they decided to put me on
ranging from auras, absence, partial complex and full complex seizures. I have
been going through all the testing to see if I am eligible to have brain
surgery. The fact of surgery scares me. I have talked to so many people about
it like my family; they really want me to get it to help with my seizures. All
the doctors I have talked to says it is a good idea. And my friends are very
supportive about this idea with surgery. Also my friends are very supportive
with me and my epilepsy, they have always been there for me and helped me
through so much. I love them! I am very open about my epilepsy; I tell anyone
that I’m with just so I can be safe in case I have a seizure.
I am constantly fighting the stigma of having epilepsy and I have made it my mission to tell people about it, to help them be more comfortable with people that have seizures. Breaking that stigma is why my family is
involved with seizure training and why we are all so open to friends and
anybody who wants to know more.
epilepsy, but epilepsy doesn’t have ME!!!
was a healthy little boy saying mama & dada and waving, until 10 months old
when I suddenly developed “A-tonic
drop seizures” & “Absent
Seizures” aka “Petit-Mal”in August
2009. My world suddenly changed as I had 100’s of seizures a day. After I
started having seizures, my brain couldn’t keep up and I was diagnosed with
severe brain disorder called “Epileptic
Encephalopathy” and started regressing
developmentally. I stopped pointing, waving & saying mama & dada. I
don’t talk anymore & get frustrated so I cry a lot. I am developmentally a
10 month old & a 20 month old motor wise, but I am really 3. I started the Ketogenic
Diet in 2010-2011, it helped 75% of my
seizures, I was on it for 1 year…but ALL of the seizures came back in FULL
FORCE. I’ve also been diagnosed with “Intractable
Epilepsy” meaning that my seizures are being
treated, but they aren’t stopping. I’ve been on A LOT of seizures meds, none of
them worked…they made my seizures worse. Doctors call me a
“complicated” case and don’t know how to help me. On February 22, 2011-
I flew across the county to the
Clinic in Ohio & neurologist Dr.
Deepak Lachhwani found that my
left temporal & occipital lobes are malformed
Dysplasia“. They found a 3rd seizure type
as well, “Infantile
Spasms” aka “West Syndrome”
which are HORRIBLE seizures with a poor prognosis on development. On September
1, 2011 I had brain surgery to remove my Left
Temporal & Occipital Lobes by the BEST neurosurgeon, Dr.
William Bingaman (who has done the MOST pediatric brain
surgery’s and has NEVER had a fatality, most hospitals have a 1 in 100 deaths
from brain surgery). I had 150+ seizures a day for 2 straight years. Since
my surgery, my mommy & daddy haven’t seen any
“S’s”. You can read more about me on my blog www.beatingepilepsy.blogspot.com
Eli Daniels was born on January
23, 2012. He was born four weeks early
at 3 pounds 10 ounces. He was taken to the NICU in Logan, Utah, where he stayed
until February 8, 2012 when he was taken to PCMC by ambulance. He stayed in
PCMC NICU until mid April when he was allowed to come home. Eli was then
diagnosed with Laryngomalacia, a cleft in the soft palate, significant hearing
loss and blindness.
Eli has always been small but
defying doctors’ expectations. We have been told on many occasions that he is tougher
than he appears especially after his multiple surgeries and hospital visits.
After many inconclusive tests to determine what is his underlining condition
is, Eli underwent a MRI in October of 2012. The MRI showed Eli suffered a
stroke early in pregnancy. After four
months, Eli started having spasms. These were later diagnosed as Infantile
Spasms. After trying a couple of steroid treatments, the EEG no longer showed
spasm activity. After two months the seizures came back but now it has been
determined to be another form a seizures and not infantile spasms.
While there are no clear answers as to what is
causing all of his trials, Eli is a happy, stubborn little boy. He has defied
odds in his 16 months and continues to impress everyone he meets. While Eli may
still be small, at not quite 15 pounds, he is learning and growing. He leaves a
mark on everyone’s heart that he meets. He truly is a “small but mighty” little