Toddler receives help from community to fight seizures

Eighteen-month-old Sadie Stewart grabbed two brightly colored blocks and hit them together while bouncing in her sitting position.

Her mother, who sat nearby, stopped talking mid-sentence and her mouth dropped open. She leapt toward her daughter, clapping and saying, “Good girl!” She hugged her daughter tightly and smiled.
This was the first time Sadie did that on her own since before Sept. 25.

“You know how people say your life can change in an instant? Well, mine did change in an instant on Sept. 25,” said Sarah Stewart, Sadie’s mother, while holding her little girl in her lap.

Sadie is the second child for Sarah and Seth, of Jeffersonville. So, when Sadie had her first seizure in April of last year, her parents knew something was wrong.

They took her to Kosair Children’s Hospital in Louisville where she was diagnosed as having a febrile seizure — a type of seizure common in young children who are running a fever.

According to the National Institute of Neurological Disorders and Stroke, about one in 25 people will have such a episode in their lifetime. Sadie, who was 8 months old at the time, was sick and had a fever, and no one thought anything more of it.

The same thing happened again in early September. Again, Sadie went to Kosair and again she was diagnosed as having a febrile seizure.

But on Sept. 25, Sadie’s nonstop seizures began. Those lasted for six weeks, with some days finding her having up to 30 seizures. Sadie did not respond to any medications during that time, and later was diagnosed with epilepsy.

“Up until then, she was a typical toddler doing things toddlers do,” Sarah said. “Now, she’s taken about 10 steps back.”

Before that day, Sadie was talking, walking while holding on to furniture, self-feeding and more at 13 months old. Those six weeks changed all of that.

“It’s scary. It’s very scary,” Sarah said. “It’s so hard to watch your child go through that and when the doctors are saying, ‘We’ve done all that we can do.’

“Then you’re pretty much at the end of your rope. All you can do is turn to God.”

After spending months in and out of Kosair and The Cleveland Clinic, Sadie came home to her family, where her mom saw the final toll the seizures had on Sadie’s development. Sadie could no longer do many of the tasks she had once done and it was time to start the teaching process all over again.

“It’s hard, because it’s not like she was born this way and we have dealt with it all along,” Sarah said. “She was just fine, until then.”

With ongoing therapy through First Steps, Sadie has regained some of her skills, such as self-feeding, but she will only use her right hand, since the left side of her body suffered the most from the seizures.

She also is starting to walk while holding on to furniture again. However, many of her motor skills have not caught up to where she left off. Sadie also has not talked since September.

Sarah — a teacher at Bridgepoint Elementary School in Jeffersonville — has taken a break from teaching to be home with Sadie.

“I do miss teaching and being in the daily grind, but I have to make this sacrifice for her for now,” she said.

Her co-workers there organized a benefit for Sadie in November and even put Sarah in touch with other mothers who have gone through similar situations with children.

One of the moms had a child in first grade, the other had one in seventh. Both are now doing well in their classes and everyday lives.

“It just gave me hope that she will be able to go on and live a normal life,” Sarah said.

For now, Sadie will have to continue her therapy to catch up to where other children her age are developmentally. So, family and friends have organized another benefit set for Feb. 2 in New Albany to help with the bills that keep adding up.

“It’s also in a way a celebration for Sadie’s life and for her not seizing anymore and for her getting her skills back,” Sarah said.

Sarah said she’s amazed at how much the community has come together to help her daughter and her family get through this tough time.

“Boy Sadie, are you going to have a tale to tell.” Sarah told her daughter. “We’re keeping a scrapbook for her, so she’ll know what everybody did for her.”

But what little Sadie did for her family, Sarah says, is so much more than she could know.
“She’s an angel. She’s mommy’s little angel,” Sarah said as she rubbed her nose to Sadie’s. “She’s taught us a lot of life lessons. She’s taught us what’s really important in life and that’s God and family.”

Deletion of protein in mice can lead to seizures

Scientists have discovered that mice genetically engineered to lack a particular protein in the brain have profound deafness and seizures. The finding suggests a pathway, they say, for exploring the hereditary causes of deafness and epilepsy in humans.

More broadly, the discovery provides an entry point for gaining new insight into the role of glutamate, the chemical messenger carried by the protein, says the team, led by scientists at the University of California, San Francisco. Glutamate is involved in virtually every brain function, including sensory perception, learning and memory.

The missing protein is a particular “vesicular neurotransmitter transporter,” a machine within nerve cells that ferries chemical messengers, or “neurotransmitters,” from the fluid-filled cytoplasm into vesicles that are positioned at the tips of nerve cells and serve to release neurotransmitters onto neighboring cells. Transporters and neurotransmitters work together to make possible essentially all neural communication in the brain.

While the neurotransmitter glutamate is the major excitatory messenger in the brain, the neurotransmitter GABA is the major inhibitory messenger, sending signals that reduce excitation and anxiety. Two other neurotransmitters, dopamine and serotonin, modulate the activity of neural circuits to influence mood, sleep and other aspects of behavior.

Scientists have known for several years about two vesicular glutamate transporters, VGLUT1 and VGLUT2. As would be predicted, they are expressed on nerve cells that release glutamate. More recently, scientists have identified VGLUT3. To their surprise, they have discovered that VGLUT3 is expressed primarily by nerve cells that release GABA, serotonin and acetylcholine, another neurotransmitter. VGLUT3 is also released in some non-nerve cells, in tissues outside the brain. These findings led scientists to suspect that VGLUT3 might support some function other than neurotransmission.

In the current study, published in the Jan. 24, 2008 issue of “Neuron,” the team explored the role of VGLUT3 in mice genetically engineered to lack the transporter. The effect was dramatic.
“Mice lacking the transporter are completely deaf from birth,” says the senior author of the study, Robert Edwards, MD, professor of neurology and physiology at University of California, San Francisco. “Moreover, they had significant seizures.”

As the gene that encodes VGLUT3 is known to have sequence variations in humans, it is possible that these or other variations may be the underlying cause of deafness or epilepsy in humans, according to the researchers. They plan to screen people with these conditions for variations in the vglut3 gene, says the first author of the study, Rebecca Seal, PhD, a postdoctoral fellow in the Edwards laboratory

In addition, because the mice in the study lacked the protein in all cells that would normally make it, the team plans to make a “conditional knockout,” in which the gene is inactivated only in specific types of nerve cells. This will reveal which nerve cells expressing VGLUT3 account for a particular brain function.

At the outset of the study, the team knew that VGLUT3 was expressed during brain development by a population of inhibitory GABAergic neurons in the brainstem pathway that transmits information about sound. They suspected that the absence of VGLUT3 -- which would allow the release of the excitatory glutamate -- might produce a subtle defect in sound localization. Instead, the animals were completely deaf.

The explanation, they learned, was that VGLUT3 contributes to the release of glutamate at a key point in the production of sound. It turns out that inner hair cells of the cochlea, which are known to convert the auditory input, or signal, into glutamate release, express VGLUT3, and the transporter contributes to the release of glutamate onto the first neuron in the pathway that carries sound into the brain. Without VGLUT3, no glutamate is released at that synapse.

The scientists also knew from the outset that VGLUT3 is expressed by a subset of neurons in the hippocampus and cortex that are known to release the inhibitory transmitter GABA. The presence of VGLUT3 suggested that these neurons might also release the excitatory glutamate. Since inhibitory neurons contribute to a range of oscillations in brain wave activity, the team hypothesized that disruption of these systems might affect brain wave activity in the cortex.

In fact, an EEG (electroencephalograph) revealed that all of the mice had seizures, and even when they weren’t having full blown attacks they had abnormal electrical discharges in the brain, known as “epilepiform” activity. Surprisingly, the seizures -- which last up to two minutes -- were accompanied by little or no change in behavior.

The team plans to screen young patients with hereditary or early-onset epilepsy to see if they have mutations in this protein, says Edwards.
Since VGLUT3 may be required for relatively subtle aspects of behavior not easily elicited in a mouse, the researchers would also like to identify and study human patients, according to Edwards. The neuromodulatory effect of glutamate release by serotonin neurons, he says, may be easier to detect in humans.

“If we found patients lacking VGLUT3,” he says, “we could carry out psychological testing, which would in turn give us an idea why most serotonin neurons also release glutamate.

“This is a case of a mouse model leading us to patients, who will, in turn, suggest additional functional roles for glutamate that we can test in the mouse. The results will help us to understand basic brain function and how it goes awry in disease.”

Folic Acid helped baby with seizure disorder

Cute and healthy, Rosendo Rivera was everything his mother dreamed of.
"He slept, he ate, he gained a lot of weight; he was fine, everything was perfect," says his mother, Mayra Rivera.

But when he was 4 months old, Rosendo's mom got an inkling that something was wrong. First his eyes started to cross -- that was just the beginning.

"He went from laughing, rolling to completely being a baby who couldn't hold his head up. He stopped laughing, rolling, babbling. I said this is like a bad dream. I can't believe this is happening," said Mayra.

Doctors were stumped. Rosendo continued to deteriorate and had up to 60 seizures a day. He was diagnosed with everything from mental retardation to cerebral palsy, and then, something worse: mitochondrial disease, a condition in which the body can't produce energy.

His prognosis: He wouldn't live past his teens.

"I was devastated. I was watching my son deteriorate before my eyes, and there was nothing I could do for him. This cannot be my life, this cannot be my son's life. I was waiting for God to give us a miracle," says Mayra.

By chance, she met Dr. Mary Kay Koenig, who believed Rosendo may have been misdiagnosed, and Mayra got the miracle she had been dreaming of.

"I realized that although he had been tested for a majority of conditions that can cause his symptoms, he had not been tested for cerebral folate deficiency," says Koenig.

In folate deficiency, the body is unable to transport the vitamin folic acid to the brain, resulting in seizures, mobility problems and blindness. Fortunately though, this disease is 100 percent treatable in toddlers with a simple supplement.

In August, Mayra got the news: Rosendo had folate deficiency.

"I was so happy I was crying. I was like, thank you God, my prayers are answered. I knew it was a miracle," says Mayra.

Not only was he not going to die, but he could actually recover. Rosendo has been taking the supplements for four months now, and he has made remarkable strides.

"He's sleeping better, he's babbling, he's making new sounds, he's sitting down for longer periods of time. It's really exciting. It may be little for some people but really exciting for us. It's big,"says Mayra.

Bright Future

Dr. Pamela Blake joined "Good Morning America" today to share the latest details of Rosendo's recovery.

"He's gaining ground very quickly from all of the delays that he had. He is doing very well. He's had a great return of his visual function. His motor function is better, he is starting to talk, he can say "Momma," which he could not do before," says Blake.

Nowadays Mayra even has reason to hope that Rosendo might be able to live a normal life.
"Fortunately, because he was diagnosed properly and treated before the age of 3, the expectation is that he will do very well and hopefully should have a full recovery," says Blake.

Age 3 is turning point, because before that brain development is very precious and any deprivation of sensation can cause life-long damage.

"Folic acid is transported by a different receptor, a different protein taken into the brain and he has no problems with that receptor, so it's very simple," says Blake.

What makes it even better is that it's about as easy as it gets to administer. Rosendo takes just one tablet a day now. He'll have to for the rest of his life, but doctors say now that his life should be a long and healthy one.

What is musicogenic Epilepsy?

Now that surgeons have operated on Stacey Gayle's brain, her favorite musician no longer makes her ill. Four years after being diagnosed with epilepsy, Gayle recently underwent brain surgery at Long Island Jewish Medical Center to cure a rare condition known as musicogenic epilepsy.Gayle, a 25-year-old customer service employee at a bank in Alberta, Canada, was suffering as many as 10 grand mal seizures a day, despite being treated with medications designed to control them. The condition became so bad she eventually had to quit her job and leave the church choir where she sang.

Eighteen months ago, she began to suspect that music by reggae and hip-hop artist Sean Paul was triggering some of her seizures. She recalled being at a barbecue and collapsing when the Jamaican rapper's music started playing, and then remembered having a previous seizure when she heard his music.Her suspicions were confirmed on a visit to the Long Island medical center last February, when she played Paul's hit "Temperature" on her iPod for doctors.

Soon after, she suffered three seizures."Being that the seizures could be triggered by the music, this was a very interesting opportunity to study Stacey's brain," said Dr. Ashesh Mehta, the hospital's director of epilepsy surgery.During the first surgery, doctors implanted more than 100 electrodes in the right side of her brain to pinpoint the abnormal area of her brain.

The surgeons followed that procedure with a second surgery to remove the electrodes, along with parts of her brain suspected of causing the seizures."We used the latest techniques, including image guidance, to pinpoint the areas of abnormality, and the operating microscope to perform the procedure during a four-hour operation," Mehta said.Within three days, the woman was released from the hospital and has not experienced a seizure since."I always live each day like it's my last," she said. "I want to show others that life does not end at epilepsy. I know I have what it takes to succeed."

Attack on man left him with seizures

RACE-hate mob victim John Payne has spoken out for the first time this week after three of the 30 thugs who tried to beat John to death were jailed at the Old Bailey for a total of 54 years last Friday (Jan-11).John was attacked for what the court heard was "no other reason than he is white" when he ventured onto the mainly Asian Clichy housing estate in London's East End.

A friend desperately held his skull together as the baying mob reined blows down on him with a machete or axe and other weapons.It was the miracle that kept him alive which helped surgeons at the Royal London Hospital save him. John told the Advertiser how the attack on the estate in Stepney nearly two years ago has ruined his life."I won't be able to work in the near future," he said."I can't sleep and can't drive because of the epileptic seizures the attack has left me with."Nor can I just go to the pub with my friends or play football."I am frightened to pick up my baby daughter in case I have a seizure."They have ruined the rest of my life."

The 35-year-old now suffers regular seizures, walks on crutches because he can't move his right foot and is still having physiotherapy for his arms and legs. But there is some light at the end of the tunnel.John and his 29-year-old partner Corinne Smith, who have a one-year-old daughter Charlotte, are now expecting twins, a boy and a girl, in April. "I'm happy about having twins," he says."But I'm also sad because I can't do the things I would want to with my children.

"I won't be able to play football with my son and won't be able to carry them to bed because I now struggle to get up and down the stairs."John who worked as a site manager for Metronet in Canary Wharf, can't quite draw a line under what happened, even though three of his attackers, Sodrul Islam, 23, Mamoon Hussain, 20, and Delwar Hussain, 21, are each behind bars for the next 18 years.The thought that the rest of the 30-strong mob of racist thugs could still be walking the streets still haunts him and left John too frightened to go out on his own.

"I think justice has been done," he adds. "But the attacker who hit me over the head is still out there somewhere." He vows never to return to the Clichy estate, where he was walking with four friends after a night drinking at an East End pub that fateful night.

Epilepsy made her a lonely child in Uganda

SHE sits alone most of the time, hardly plays with her friends but watches them from afar.
She is afraid of strangers and will hesitate to talk to one; until she realizes that you are harmless. She is kind little girl.

Priscilla Apio, 15, was born normal just like any other child.

Unfortunately one and half years down the road, the bouncing baby girl developed cerebral malaria, which almost claimed her life.

"We took her to hospital, got treatment and her condition improved. Little did we know the worst was yet to come" her mother, Mrs Rosemary Okware says.

"She started acting strange. We again went to several doctors for help but all in vain. It was until we went to Mulago Hospital where she got a CT scan (brain scan). We were told she had frontal left epilepsy," her father Mr Jofisa Okware says.

Epilepsy, according to experts is a common neurological disorder that causes recurring seizures.
A seizure is a temporary abnormal electro-physiological phenomenon of the brain. It can make some people lose consciousness and run, vomit, bite their tongue, urinate or even kick violently.
Seizures happen when clusters of nerve cells, or neurons, in the brain send out the wrong signals.
Apio was supposed to have a third brain scan but due to financial constrains, it was not done.
"The doctors told us that if she had the third scan and they found out whatever they wanted to find, she would be operated upon abroad. But we knew we could not afford it so we gave up," Mr Okware says.

Apio's life has changed. She gets seizures now and then.

To shorten the frequency of the seizures Apio has to take medicine every day, a thing she started at one and half years of age.

Unlike other epilepsy cases, Apio neither urinates nor vomits. She gets up on her feet and runs anywhere.

At home, her parents and siblings hold her to prevent her from running into objects that can cause her injury like fire, sharp instruments and branches or pits.

"When it comes to school, no body holds me. I run and fall down. When the attack is over, I get up on my own and rest under a shade," Apio says.

Her classmates at Kidoko Primary, in Molo Sub-county, Tororo District are now afraid of her.
"My classmates fear me because of my disease. If it (the seizures) comes while I am in class, they all run away and by the time I get back to my senses, I find my self either alone or with a few on lookers" she says.

"I feel bad when people run away from me. Some of them even call me a mad person.

"Some times I want to play with them but I can not because they fear me." This is why she has resorted to sitting and just watching from a distance.

During fruit seasons, she goes climbing mango and quaver trees, to give her classmates so that they can be friends with her "but they still fear me," she says.

She loves going to school, drawing pictures, teaching children much younger than her the alphabet and yearns to go to high school like her elder siblings and twin brother.

Sometimes she closes the world outside, the door, in an empty class and cries.

"I felt very bad when I made a random visit to her school and found other children in class and my daughter in an empty room...sitting alone, all by herself," her father says.

Apio did not sit for end of year 2007 examinations which would have led to her promotion to Primary Five.

"I wanted to sit for it but children feared me so I did not want to disturb them. Whenever the teacher is around they sit but murmur about me. When the teacher is not around they all run out and leave me alone".

"I want to tell dad to remove me from that school and take me to a school where people do not fear me," she says. Her current school is the fourth she has been to since she started going to school.
"Her case is unique and so she needs special attention. If we had the money we would have taken her to a special school where she would be attended to by teachers who handle children like her. But we are incapable of that," Mr Okware says.

"We shall be very happy if any Good Samaritans help give our daughter a future."

"We have gone to her school and asked the teachers to tell the pupils that epilepsy is not contagious but in vain. We have now left everything to God," Mrs Okware says.

Apio is just one example of people who are stigmatized because of illnesses they suffer.
"Let the government send special needs teachers to rural schools too," Mr Okware says.

Community helps 5 years girl with seizure disorder

Five-year-old Madison G. Sanders likes puzzles and books. She enjoys playing dress-up and listening to music.

But she is a girl of few words. Those words increase day by day, though, and for that, she and her family owe some thanks to their community.

The few words she had in her vocabulary as a very young child were taken from her when she began having seizures at 18 months.

Madison's parents, Rhonda J. and William C. Sanders, of Turners Falls, had noticed that the second of their three children was delayed and when she was a year old brought in help.
Madison and her 7-year-old brother, Hunter C., have developmental delays and epilepsy. The youngest of the Sanders children, Abigail E., 4, has developed normally but has had fever-related seizures.

From the time Madison was 18 months old until she was 3, she tried seven seizure medications, but none made her seizure free. Not even a special high-fat diet relieved her of the seizures. She saw a metabolic specialist, geneticists and an epilepsy specialist in Boston, but still the seizures continued.

So when her mother heard about the Mayo Clinic in Rochester, Minn., Rhonda Sanders went online and contacted it. Within 20 minutes an intake person there called her for more information and before she knew it, she and her daughter were headed west. Doctors at the clinic thought they could help Madison.

After tests showed the doctors the seizure activity was pinpointed in the right temporal lobe, it was decided that Madison would have surgery to remove part of that lobe and part of the hippocampus, an area of the brain associated with basic drives, emotions and short-term memory.

The surgery took place in October, and since then Madison "has done amazing," said her mother, a nursing home licensed practical nurse.

Prior to the surgery, Madison had 12 to 15 seizures a month; she's had about a half dozen in the two months since surgery. She continues to take medication and eat a high-fat diet.

When she has a seizure, Madison "pretty much stares off" and might get pale with ruby-colored lips, her mother said. It lasts for between 15 and 30 seconds, and her parents talk her through it. When it is over, she might lay down or, more often, get back to what she was doing.

Not long after the surgery, Madison said "hi," and her vocabulary is continuing to grow. Her mother is eager for her to string words together for a sentence, but for now random words like "purple" and "Abigail" are thrilling.

"We always knew she was in there," Rhonda Sanders said. "It was like a piece of her was missing"
Now Madison plays with her siblings and classmates in preschool at Hillcrest School in Turners Falls, and she focuses more on projects. She can walk from her classroom to the cafeteria and doesn't need to be pushed in a stroller like before the surgery. "She has come out of her shell," her mother said. "She's just so into the world now."

Rhonda Sanders expressed gratitude to the Montague Elks, the Turners Falls Fire Department, the St. Stanislaus Society and the family and friends who donated about $5,000 to help the family with expenses such as airfare, meals and hotel stays associated with Madison's hospitalizations in Minnesota.

"We truly appreciate everything they've done," she said. "It was such a huge help."

Madison has a follow-up appointment at the Mayo Clinic on Jan. 20, and her brother will be going for an evaluation with the hope he too can get help.

Basketball, a dream come true for boy with seizure disorder

Little Stockton May loves basketball just like his namesake, but this special athlete faces challenges on and off the court. He was diagnosed with a rare genetic disorder called Dravet Syndrome when he was only four years old.

Dravet Syndrome causes Stockton to have seizures, sometimes one after another, and his disorder doesn’t respond well to medication. Simple things can trigger violent seizures. Things like light, noise and heat. These are conditions frequently found on the basketball court. This caused a conflict in Stockton’s young life.

He desperately wanted to play ball, but couldn’t tolerate a normal court. So, his parents would take him down the street in the black of night, to play ball on blacktop, but they had to stand behind him at all times, just in case he had a seizure and fell. Make A Wish Foundation of Utah granted a special wish for this special little boy: a basketball court in his backyard.

It’s completely covered to keep out the light and heat that bothers Stockton so much. It also has rubberized flooring to protect him from any spills he might take pursuing his passion. His parents now have a new problem: how to get Stockton to come inside!To find out more about granting wishes for Make A Wish of Utah, or having a wish granted, call 801-262-9474 or visit http://www.makeawishutah.org/

Can Absence or Petit Mal seizures can be confused with daydreaming?

For most of us, a "seizure" is a scary incident involving bodily reactions such as uncontrolled muscle contortions or loss of consciousness. But some types of seizures are less obvious, and those people who are affected may hardly exhibit any kind of abnormal activity at all. One such type is called an absence (petit mal) seizure. Unless you know what you're looking at, you may not even notice it when someone has this kind of seizure.

An absence seizure disorder is a type of epilepsy that affects mainly kids. "Staring spells" are the chief symptom. While a child is engaged in an activity, he may stop abruptly and stare off blankly into space. An incident usually lasts a few seconds and ends as quickly as it began. The child generally isn't even aware that the seizure has occurred and has no after-effects.

During the incident, the brain undergoes electrical activity that's unusual but brief. There typically aren't additional signs that would tip someone off to a problem.

Absence seizures can have an effect on a child's school or athletic performance or social development. But happily, most kids with the condition outgrow it. If you are worried that your child is unusually prone to "zoning out," talk to your doctor.

Can there be a link between earthquakes and seizures?

Earthquake-prediction techniques could help develop a way to forecast epileptic seizures, according to research which found striking similarities between the electrical activity in the brain before and during seizures and seismological data around earthquakes.

Both are usually preceded by small, barely detectable tremors and, as with an earthquake, the longer it has been since a seizure, the longer it will be until the next one. According to scientists, these shared features mean that the patterns are not random and could even be governed by similar mathematical rules.

Epilepsy comprises a set of conditions which disrupt the electrical activity in the brain and the main symptoms are recurrent, unprovoked seizures. It is one of the most common long-term neurological disorders, affecting 456,000 people in the UK and around 50 million worldwide.

The condition can often be controlled by drugs that damp down the brain's electrical activity, although surgery to remove the affected part of the brain is sometimes used in the most hard-to-treat cases.

Seizures often start suddenly in a region of the brain and can then spread to engulf the organ. An earthquake also appears as a sudden, potentially damaging vibration focused around a relatively well-defined point. The researchers said both seizures and earthquakes could be thought of as "relaxation events", in which accumulated energy is suddenly dissipated.

In their study researchers led by neurologist Ivan Osorio from the University of Kansas showed the frequency of both earthquakes and epileptic seizures could be described by "power laws", which can often explain the frequency of events that, on the surface, seem random. In earthquake prediction power laws link the size of an individual quake with the time that passes between quakes of that size.

Osorio suggested that the similarities between electrical activity in the brain and seismic activity could bring prediction and prevention of seizures a step closer. "This suggests a novel research direction for the prediction of seizures based on the notion that seizures beget seizures," he wrote in a paper uploaded to the Arxiv website, where scientists swap research findings before they undergo peer-review.

Matthew Walker of the experimental epilepsy group at University College London told New Scientist magazine that the research was an "attractive concept", adding that "a good predictive method could revolutionise people's lives". But he cautioned that the Kansas team had yet to show that its method worked in practice.

US saves toddler's life which was stricken with seizures

The mother of a seriously-ill Ulster toddler who flew to the US for life-saving treatment has paid tribute to the thousands of people in Northern Ireland who gave generously to help them.

Charlotte Caldwell told the Belfast Telegraph that words could not express her gratitude to those who dug deep to help send her son Billy to receive specialist treatment at the Children's Memorial Hospital in Chicago.

Two-year-old Billy was diagnosed with a severe form of epilepsy when he was just four months old. He spent much of his young life at the Royal Victoria Hospital receiving treatment.

However, after a few months doctors sent him home to die. They initially gave Billy six months to live.

Not satisfied with their diagnosis, the mother-of-two set about trying to find answers and came across a children's epilepsy expert in the US.

A special fund was set up, which raised £175,000, to fund Billy's trip and pay for all his medical costs.

The pair then spent more than three months in Chicago where doctors conducted numerous tests on the Omagh toddler to see if he was a candidate for life-saving surgery.

Before arriving in the US, Billy suffered up to 30 seizures a day. It would only take one extreme seizure to kill him.

Charlotte had hoped the tests would confirm that Billy was a candidate for an operation which would end his seizures. But last month the family was told that he was not.

Instead they were able to tell the family that Billy suffered from a rare neuro-genetic disorder call Angelman Syndrome. His epilepsy is only an underlying symptom of the disorder and doctors have prescribed a treatment more suited to the child's needs.

This, of course, means vindication for Charlotte.

Last year, before the pair set off for Chicago, the Health Minister Michael McGimpsey tried to convince her to go to Great Ormond Street to seek help even though, Charlotte claimed, doctors had originally told her there was no treatment in the UK or Ireland.

"I just feel I was justified," Charlotte explained. "While it's not the best diagnosis in terms of that it means - he will have speech problems, developmental delays, that his seizures won't subside until his is about eight or nine or that he will ever lead an independent life - we are just relieved that we have a diagnosis.

"For the first time in two and a half years he is on the correct treatment. Before, Billy was on four drugs, three of which he did not need to be on."

Besides reduced medication and a new diet, Billy will also have to undergo intense speech, occupational and physio therapies for the rest of his life.

Charlotte hopes to use the money raised to fund private therapists as well as pay for regular trips to the US for treatment.

She has also made a New Year's resolution - to get Billy walking. She said: " He is going to have to have intense physiotherapy to do it, but now that we are able to give him the right treatment, it's possible.

"I just want to thank everyone who donated to Billy's fund.

"I am convinced if we had not had that money Billy would not be here today."

Rod Stewart's son rushed to hospital with fever that could trigger seizures

Panic-stricken parents Rod Stewart and Penny Lancaster made an emergency dash to hospital with their son of two when his temperature rocketed to 102F.

The distraught couple rushed little Alastair in the car from their home in Miami on Sunday morning when he suddenly fell ill.

They were taken to the emergency room fearing the toddler had contracted meningitis.

An insider said: "Alastair was burning up inside and Rod and Penny were very concerned.

"They decided not to take any chances and rushed to hospital and were told to take him straight to the children's emergency room."

"Like any parent, they were worried it could be something like meningitis."

Doctors say it is vital for parents to monitor their child's temperature as a sudden rise can lead to seizures.

A high fever can also be a symptom of brain bug meningitis, which has potentially fatal consequences. But, luckily, medics diagnosed the boy with an upper respiratory and ear infection and prescribed antibiotics.

The insider added: "They were very reassured by the treatment he was given and the fact he was allowed home the same day."

Penny, 36, said yesterday: "Alastair had been suffering with a high fever, so was taken to St Mary's Hospital in West Palm Beach.

"He was diagnosed as having an infection.

"The hospital was very thorough and their quick diagnosis and response now has him comfortable and responding well to the antibiotics at home."

The youngster was not kept in overnight and was allowed back to their Miami home, where he is now recovering.

Pain and pressure in the ear caused by a middle ear infection are often associated with upper respiratory infections.

But a sudden rise in temperature in children rise can lead to seizures called febrile convulsions where part or all of the body may shake and twitch, and the eyes may roll back in the head.

Rod, who turns 63 on Thursday, and Penny, who impressed audiences on the BBC's Strictly Come Dancing, tied the knot in Italy in June last year.

The couple are now thought to be planning to have another child.

Feverish temperatures can be anything over 100F. Normal body temperature in children - best measured in his/her armpit - ranges from 97.7F to 100F

Can medication diminish brain damages caused by Epileptic seizures?

For some epilepsy patients, the aftereffects of their seizures can be as troubling as the seizures themselves. Often, patients can be left with mental impairment, including memory loss, slowed reactions and reduced attention spans from those unpredictable electrical storms that explode across their brains.

But now scientists at Washington University in St. Louis say they not only have seen physical changes in the brain caused by seizures, but also have blocked those changes in animals.
"Assuming that these structural changes are linked to cognitive impairment -- and there's a lot of data to suggest that's true -- then this could provide us with a path to therapies that reduce cognitive problems in epilepsy," said Dr. Michael Wong, senior author of the report.

Approximately 1 percent to 2 percent of the general population suffers from some form of epilepsy. Severe or prolonged seizures can cause brain cell death, leading to anatomic damage visible on brain scans. But in some cases, the cognitive impairments caused by seizures cannot be linked to discernible damage.

In studies on mice, Wong and his team found that induced seizures caused almost immediate damage to dendrites, a structure on nerve cells that receive signals. By administering a drug known as FK506 before inducing the seizures, a major part of the damage was prevented.
"To follow up, we're going to be looking at whether we can tie those changes in dendrite structure to behavioral changes in the mice," Wong said. "We're also going to be searching for drugs that can reverse this effect after a seizure happens.

"We would like to avoid putting epilepsy patients on a new drug all the time and hope instead to find something that can be given immediately after a seizure to prevent cognitive impairment."

Children's Hospital

Transplant pace sets record

Last year proved to be a record-setter at St. Louis Children's Hospital, which performed more heart transplants in 2007 than in any other year in its history.

Cardiothoracic surgeons performed 25 transplants last year, breaking the old record of 24 in 1996. Dr. Charlie Canter, who directs the hospital's pediatric transplant program, attributes the increasing volume to a changing attitude toward transplantation in young patients.

"More pediatricians are becoming more comfortable with using transplantation to treat end-stage heart disease in children," he said. "Whereas years ago it may have been considered a heroic or extraordinary measure, today heart transplantation is as accepted as a kidney or liver transplant."
In addition, the hospital dedicated a Cardiac Intensive Care Unit last May to bring new technology and more specialized care to cardiac transplant patients.

Study: Restless legs a risk factor

People with restless legs syndrome (RLS) are twice as likely to have a stroke or heart disease compared to people without the disorder, according to a new study published in today's issue of Neurology.

Moreover, researchers found that the risk is greatest among those who have the most frequent and severe symptoms.

The study was the largest of its kind involving both men and women. It followed nearly 3,500 people with an average age of 68. It found people with RLS were more than twice as likely to have cardiovascular disease or cerebrovascular disease even when results were adjusted for age, sex, race, body mass index, high blood pressure and a half-dozen other variables.

"Most people with RLS have as many as 200 to 300 periodic leg movements per night of sleep, said Dr. John Winkelman of the Harvard Medical School, who wrote the study. "These leg movements are associated with substantial acute increases in both blood pressure and heart rate, which may, over the long term, produce cardiovascular or cerebrovascular disease."

Panel focuses on incontinence

One in four U.S. adults can expect to experience incontinence at some point in their lives, and the federal government wants new treatments to be found -- and more sufferers to talk about it.
Women are most prone to incontinence, which is the inability to control urination or bowel movements. But everyone's risk rises as they age, especially people who are overweight and sedentary.

With the population growing older and fatter, scientists convened by the National Institutes of health issue recently issued an urgent call for research to find better ways to prevent the problem and to remove the stigma so more people will seek help.

Today, fewer than half of people with incontinence volunteer their symptoms to a doctor despite the availability of effective treatments, the panel found. The panel acknowledged that prevention would be better, but major gaps in the understanding of the physiology of the problem currently hinder that effort. For now, the panel's best advice is to seek help, exercise and maintain a healthy weight.
Grants aim to put research to work

St. Louis University will use two grants totaling nearly $5 million to find better ways of putting research results to work fighting cancer and chronic disease.

"We are spending $25 to $30 billion annually on health-related research," said Ross Brownson, a professor of epidemiology at the university's School of Public Health. "We need better ways to put our rich list of discoveries into practice."

A five-year, $2.5 million grant from the National Cancer Institute will study whether personalized stories are better than the traditional policy briefs and statistical summaries at reaching the hearts and minds of lawmakers.

"I don't think anyone has systematically tested the power of stories to communicate cancer prevention messages to policy makers," Brownson said. "We're looking at how to make information more memorable so that lawmakers are more likely to take action."

A $1.3 million, three-year grant from the Centers for Disease Control and Prevention will look at what helps or hinders state health departments in taking what researchers learn about fighting chronic disease and putting it into practice in the community.

Caffeine study recommended

An advisory board in California recently called for a study to determine whether soda and energy drinks containing caffeine pose a risk to pregnant women.

The review could lead to warning labels on the drinks under Proposition 65, a 1986 ballot measure that requires the state to identify chemicals that could cause cancer or birth defects.

The panel also requested an immediate review of bisphenol-A, which could lead to warning labels on plastic baby bottles, water bottles and reusable food containers. The chemical bisphenol-A has been shown to affect hormone levels.

In calling for the caffeine study, panel members said previous studies have linked it to miscarriages, premature births and low birth weight. The requirement would not apply to coffee and tea because caffeine occurs naturally in those products; Prop 65 applies only to food additives.

It is uncertain whether the state will follow either recommendation.

Can vaccinations be related to seizures?

In September of 2008, New Jersey parents will be forced to vaccinate their infants and preschoolers with a pneumococcal and yearly flu vaccine as a requirement for day care and preschool. Because of the nature of the flu vaccine, each year a different virus is targeted and a new vaccine developed. By mandating the flu vaccine, every year a child will receive a combination of vaccines without an established safety history.

U.S. Senate Bill 732, known as the "Comprehensive Child Health Immunization Act of 1993," made known that there are risks to vaccines. The following is from that bill: "Vaccine information materials should be simplified to ensure that parents can understand the benefits and risks of vaccines." But, how can all the risks of a new vaccine or vaccine combination be known and communicated to parents when the flu vaccine is off the market nine months after its introduction?

In 1994 when my oldest daughter was immunized, the vaccine information from my pediatrician not only listed fever, pain and swelling at the injection site but also some scary side effects such as seizures, encephalitis and death. When I vaccinated my son in 1998, I noticed my pediatrician provided no information and I thought, "Good, they fixed the problems with the vaccines."
In 2001, when my third child was vaccinated, the nurse asked the doctor, "Why so many?" He responded, "They changed them." I assumed he was referring to the removal of mercury and a move to separate the combination vaccines. I was wrong. My daughter's vaccines contained mercury and a newly licensed pneumococcal vaccine was added to her lot of six other toxoids she would receive that day.

My daughter had eight seizures after her four-month shots and was autistic within weeks of her vaccinations. During that time, my mute son's blood work showed significantly elevated levels of mercury and aluminum -- both ingredients in his childhood vaccines.

My daughter's seizures and autism went unreported by my pediatrician -- he remarked the timing of her immunizations, seizures and plummet into autism as a coincidence. My son's heavy metal burden was ignored as well.

The U.S. Food and Drug Administration estimates that, under the Clinton and Bush administrations, only 1 percent of vaccine-adverse events have been reported.

It is unacceptable that side-effects and injuries from even well-established vaccines are not acknowledged by pediatricians or the federal Centers for Disease Control and Prevention and that parents are not privy to information stated in the Health Immunization Act of 1993.

Unlike the information I received in 1994, today's pediatric offices sport glossy posters and brochures that minimize and euphemize the side-effects of vaccines and exaggerate the risks of disease.

The addition of these vaccines and others to the already complex and expansive childhood vaccine schedule adds more risk to our children. Parents need to know the truth about vaccination side-effects and make their own choices regarding the health and safety of their children.
Mandated indiscriminate mass vaccination is wrong. Ultimately the care of an injured child falls on the parent and not the medical establishment.

I think that the Government should butt out of peoples lives and worry about people losing their homes because of school taxes. I would home school my child before I would let anybody put all these vaccines in my babys body. You'll see, down the road these shots will cause all kinds of problems for the children, especially mental problems, then the Government will say" it's not our problem" even though they are forcing these shots on the babys. Slow but sure, the Gov is taking over our lives and dictating to us how to run and live it. Leave the babys alone! Posted by: Snarley on Mon Dec 31, 2007 12:32 am

I had a life-threatening reaction to the flu shot in Oct 2005. I was not given any information on the possible serious side effects of the vaccine. I spent 24 days in the hospital, 2 weeks in an intensive therapy untit, and the next 6 months going 3 times a week to physical therapy trying to regain the use of my legs. Two hospitals and countless specialists later, I filled out my own Vaccine Adverse Event Report after a neighbor found it on the internet. If vaccines are going to be mandatory, Doctors need to be honest about the possible side effects and report them. It is scary what they dont tell you. It is too late for me, what about your children.

While NJ has a medical exemption, the govenment does not have to accept them. So even though my doctors say my children should NEVER get the flu vaccine, NJ could demand they get them to attend public school.