Monday, April 7, 2014

There is Nothing Bummer About the Bummer Bear

 

Isn't this bear adorable?  He's a bear that is unique as the condition in which you might want to cheer up that special someone.  Of course, we were drawn to it because they even have an epilepsy related one!

http://www.bummerbears.com/products/special-order-bummer-bear

Another Child with Epilepsy and/or Asthma Receives Stuffed Animal, Book & Bracelet from Young Sisters on a Mission


The girls were happy to see this beautiful young girl with her Build-A-Bear stuffed animal the girls sent.  She also received a copy of Jamie's book about her epilepsy and an USB medical history bracelet.

Her book is available on Amazon:



Thursday, March 13, 2014

Young Sisters Deliver to Another Child with #Epilepsy - @Angels4Epilepsy

We are happy to share this cutie with his very much loved PetSmart donated Chase dressed as Superman along with his copy of Jamie's book, "I Have Epilepsy. It Doesn't Have Me" and a usb medical history bracelet.  His mom even shared a video that was priceless! <3


How Angels4Epilepsy, Inc. & Asthma Too Was Started


How we started
In 2008, within two week's of each other, Danielle had her first asthma attack right before turning one years old and her older sister Jamie had her first seizure.  What followed was endless hospitalizations and doctor visits that gave us the idea to start Angels4Epilepsy.  We started out by delivering to our local chidlren's hospital in Augusta, Georgia and followed up with a delivery to Wolfsen's Children's Hospital in Florida and then the Ronald McDonald House in Augusta. 

After winning a Pepsi Refresh Grant, we incorporated in Georgia and then filed and formed as an official 501(c)(3) non-profit registered in the Georgia.  Since then, we and our wonderful volunteers have delivered to the following hospitals:

  • Peyton Manning Children's Hospital in Indiana
  • Riley Children's Hospital in Indiana
  • Children's Hospital in Ohio
  • El Paso Children's Hospital in Texas
  • Hospital in New Mexico
  • Ronald McDonald House in El Paso

We also co-founded and funded a matching program in which we provided over 50% for each handmade teddy bear that was shipped to a child undergoing an epilepsy related procedure.  We have just concluded that project and over 100 our mascot bear were shipped and a successful Facebook support group for parents was established.

In August 2013, we founded a new Facebook support group to include children with asthma.  To date, over 60 stuffed animals, Jamie's book, "I Have Epilepsy. It Doesn't Have Me," and USB medical history bracelets have been mailed to children in the US and the United Kingdom.  

How to help
Angels4Epilepsy, Inc. is a 501(c)(3) non-profit registered in the state of Georgia.  In order to include Jamie's sister who wanted an active role with the non-profit, we expanded to include asthma.  Both girls were diagnosed with epilepsy and asthma, respectively, in 2008.   Since then, both have had a desire to help other children by delivering smiles through different initiatives. 

Awards and Recognition
Jamie has been a winner of grants and recognition through the years for her efforts ranging from Pepsi Refresh Grants to Build-A-Bear products to Walmart Grants.  She has also been a multi-winner of Build-A-Bear Huggable Heroes and Kohls Cares for Kids Scholarship winner.  We hope to see Danielle winning a few herself now that she's fully active.

Wednesday, March 12, 2014

Angels4Epilepsy, Inc. & Asthma Too Delivers to Another Child with Epilepsy and/or Asthma

Here is a fellow ginger like Jamie receiving her package from the girls. The girl's latest project focuses on delivering gift packages to children with epilepsy and/or asthma. This beauty received a Build-A-Bear bear, an USB medical bracelet and a copy of Jamie's published book "I Have Epilepsy. It Doesn't Have Me" that is available on Amazon. The proceeds from Jamie's books are used for purchases such as the Build-A-Bear animals and shipping. Please consider a donation as they are tax deductible.


Tuesday, February 18, 2014

The New Angels4Epilepsy, Inc. & Asthma Too Website


We're still working on content and getting rid of bugs but here is our new website for Angels4Epilepsy, Inc. & Asthma Too.  Once I finalize all the changes, it will be renamed to accommodate Danielle's wish to include children with asthma.

Wednesday, January 29, 2014

Another Delivery to a Child with Epilepsy and/or Asthma by Sisters for Angels4Epilepsy, Inc. & Asthma Too

Another delivery to this sweet little girl who had just been released from the hospital. The felt dolls are specially made for children with epilepsy and arrive with a Jamie teddy bear along with EEG caps for both, a hospital gown and a set of clothes. The stuffed animals were donated by PetSmart thanks to the local community.


Wednesday, January 8, 2014

I Have Epilepsy. It Doesn't Have Me Book Written by Eight Year old


To purchase Jamie's book, click on the link to be taken to Amazon.  The book is currently priced at $8.55 which was set lower to be able to get the book in more children's hands.

Tuesday, January 7, 2014

We Moved Again

Life is interesting for us at Angels4Epilepsy, Inc. & Asthma Too as we have the luck to be able to live in many places.  Our lives in El Paso has been uneventful and the first time we haven't been hospitalized for either girl since leaving Georgia.  I really think I would have loved Texas had I been exposed to more areas but I wasn't so I can say adios El Paso and we look forward to new journeys in our new state.  The El Paso community and Las Cruces was kind to our non-profit specifically PetSmart and their customers who donated so many stuffed animals to us.  Thank you, PetSmart and the El Paso and Las Cruces communities!

Saturday, January 4, 2014

Epilepsy Support Products to Support Angels4Epilepsy - 30% Off T-Shirts/Hoodies - Ends 1/6/14

To purchase an epilepsy awareness shirt "for my daughter", click on the link.  To purchase one "for my son," click this link.  You can change colors and styles of shirts as well.  Other products are shown below and please note that any profits will benefit Angels4Epilepsy, Inc. a 501(c)(3).  Please keep in mind when ordering, you can change the style of the shirt, change for gender, change size and more which can raise or lower the price.  The  profit range was set low in order to make them more affordable.  If you have a special request, send us an e-mail at angels4epilepsy@yahoo.com.

Prices aren't listed on this post because Zazzle allows customization so the prices will vary.  Once you click a link, it will take you to Zazzle.  The lowest priced t-shirt for women is white and is $19.85 for example.

These are just some of the products as there are more on the site.


Use code RESOLUTION14 for 30% off.

Click on the picture to be taken to the store:













More to come!

Want a custom order, send an e-mail to angels4epilepsy@yahoo.com.

Friday, January 3, 2014

Earlier epilepsy surgery may have reproductive benefits for women

January 3, 2014

By: SHARON WORCESTER, Ob.Gyn. News Digital Network

WASHINGTON – Younger age at the time of surgery, and receipt of fewer medications prior to surgery were associated with higher rates of pregnancy and birth after surgery in a study of women with epilepsy.

The findings, from a retrospective review of the charts of 113 women who underwent surgery involving cortical resection between 1997 and 2008 for intractable focal epilepsy, suggest that earlier may be better when it comes to surgical intervention for young women with epilepsy who desire pregnancy, Dr. Rachel R. Fabris reported at the annual meeting of the American Epilepsy Society.

For the women included in this analysis, the mean age was 13.3 years at epilepsy onset and the mean age was 30.5 years at time of surgery at the Mayo Clinic, Rochester, Minn. They had an average of 5.57 medication trials, 42% had at least monthly seizures, and 21% had daily seizures. They were followed for a mean of 5.7 years after surgery, and 75% had Engel Class I disease after surgery, said Dr. Fabris of the Mayo Clinic.

Prior to surgery, the women had an average of 0.93 pregnancies each, and an average of 0.73 births; after surgery, a total of 17 women had a total of 35 pregnancies and 25 births, for an average of 1.27 pregnancies and 0.96 births each.

One patient reported infertility after surgery.

Younger patients experienced the greatest increases in the number of pregnancies and births (P = .0036 and .0060, respectively), and those taking fewer medications also experienced a significant change in the number of births after surgery (P = .0362). The former finding is likely not meaningful, because younger women have higher reproductive rates than do older women, in general; the latter finding, however, may suggest a role for earlier surgical intervention in women with epilepsy, Dr. Fabris said.

These preliminary findings provide additional evidence of the importance of early surgery for intractable focal epilepsy, but their significance with respect to reproduction is uncertain given the small number of patients, she said. Dr. Fabris said she believes this to be the first study to evaluate the effect of surgery on reproductive outcomes.

"We already know from former studies that women with epilepsy have lower birth rates than women in the general population, and multiple studies have shown this to be a multifactorial process that involves an interplay of endocrine as well as societal factors," she said during a press briefing at the conference.

Since antiepileptic medications also are known to have adverse effects on fertility, it may be that this effect is contributing to the current findings, she noted, concluding that additional study with more patients is needed to provide more meaningful results. There were no relevant financial disclosures.
01/03/14

Thursday, January 2, 2014

Eisai Announces U.S. Availability of FYCOMPA™ (perampanel) CIII an Adjunctive Treatment for Partial-Onset Seizures in Patients with Epilepsy Age 12 and Older

Reported January 2, 2014

FYCOMPA is the First and Only FDA-Approved Non-Competitive AMPA Glutamate Receptor Antagonist

WOODCLIFF LAKE, N.J., Jan. 2, 2014 /PRNewswire/ -- Eisai Inc. announced today that FYCOMPA™ (perampanel) CIII will be available to eligible patients by prescription in the U.S. beginning January 6, 2014. FYCOMPA is an adjunctive therapy for the treatment of partial-onset seizures with or without secondarily generalized seizures in patients with epilepsy age 12 years and older. FYCOMPA is the first non-competitive AMPA glutamate receptor antagonist to be approved by the FDA.

To view the multimedia assets associated with this release, please click: http://www.multivu.com/mnr/64835-eisai-fycompa-perampanel-ciii-adjunctive-treatment-partial-onset-seizures

"FYCOMPA offers patients and their physicians a new adjunctive treatment option," said Lonnel Coats, President and Chief Executive Officer, Eisai Inc. "This is important because far too many patients with partial onset seizures continue to have seizures even while on medication."

FYCOMPA was approved by the FDA in October 2012, primarily based on three Phase III studies (304, 305 and 306). These multi-center, randomized, double-blind, placebo-controlled, parallel group studies evaluated the efficacy and safety of FYCOMPA compared to placebo given as adjunctive therapy in patients age 12 and older with partial-onset seizures. The studies demonstrated that FYCOMPA significantly reduced seizure frequency in patients with partial-onset seizures with or without secondarily generalized seizures.

In the three clinical studies, the most common adverse events (greater than or equal to 4 percent and greater than placebo) in patients treated with FYCOMPA 8 or 12 mg were dizziness, sleepiness, tiredness, irritability, falls, nausea, problems with muscle coordination, problems walking normally, vertigo and weight gain. Serious or life-threatening psychiatric (mental) and behavioral problems were also seen more frequently in patients treated with FYCOMPA. These reactions are described in the Boxed WARNING bolded below and the Important Safety Information.

"We found that these Phase III studies showed a significant reduction in the number of partial-onset seizures in patients that had FYCOMPA added to their treatment regimen," said Lynn Kramer, MD, FAAN, President, Neuroscience & General Medicine, Eisai Product Creation Systems. "The availability of FYCOMPA gives physicians an important new adjunctive treatment option for the care of those patients whose seizures are not controlled by their current medication."

FYCOMPA has been designated by the U.S. Drug Enforcement Administration as a federally controlled substance (CIII).

Important Safety Information

WARNING: SERIOUS PSYCHIATRIC AND BEHAVIORAL REACTIONSSerious or life-threatening psychiatric and behavioral adverse reactions including aggression, hostility, irritability, anger, and homicidal ideation and threats have been reported in patients taking FYCOMPA These reactions occurred in patients with and without prior psychiatric history, prior aggressive behavior, or concomitant use of medications associated with hostility and aggression Advise patients and caregivers to contact a healthcare provider immediately if any of these reactions or changes in mood, behavior, or personality that are not typical for the patient are observed while taking FYCOMPA or after discontinuing FYCOMPA Closely monitor patients particularly during the titration period and at higher doses FYCOMPA should be reduced if these symptoms occur and should be discontinued immediately if symptoms are severe or are worsening

Serious Psychiatric and Behavioral Reactions

Hostility- and aggression-related adverse reactions occurred in 12% and 20% of clinical trial patients randomized to receive FYCOMPA at doses of 8 mg and 12 mg/day, respectively, compared to 6% of patients in the placebo group. These effects were dose-related and generally appeared within the first 6 weeks of treatment, although new events continued to be observed through more than 37 weeks. These effects in FYCOMPA-treated patients led to dose reduction, interruption, and discontinuation more frequently than placebo-treated patients. The combination of alcohol and FYCOMPA significantly worsened mood and increased anger. Patients taking FYCOMPA should avoid the use of alcohol. Patients, their caregivers, and families should be informed that FYCOMPA may increase the risk of psychiatric events. Patients should be monitored during treatment and for at least one month after the last dose of FYCOMPA, and especially when taking higher doses and during the initial few weeks of drug therapy (titration period) or at other times of dose increases.

Suicidal Behavior and Ideation

Antiepileptic drugs (AEDs), including FYCOMPA, increase the risk of suicidal thoughts or behavior in patients. Anyone considering prescribing FYCOMPA or any other AED must balance the risk of suicidal thoughts or behavior with the risk of untreated illness. Epilepsy and many other illnesses for which AEDs are prescribed are themselves associated with morbidity and mortality and an increased risk of suicidal thoughts and behavior. Patients, their caregivers, and families should be informed of the risk and advised to monitor and immediately report the emergence or worsening of depression, suicidal thoughts or behavior, thoughts about self-harm, and/or any unusual changes in mood or behavior. Should suicidal thoughts or behavior emerge during treatment, consider whether the emergence of these symptoms in any given patient may be related to the illness being treated.

Dizziness and Gait Disturbance

FYCOMPA caused dose-related increases in events related to dizziness and disturbance in gait or coordination. Dizziness and vertigo were reported in 35% and 47% of patients randomized to receive FYCOMPA at doses of 8 mg and 12 mg/day, respectively, compared to 10% of placebo-treated patients. Gait disturbance related events were reported in 12% and 16% of patients randomized to receive FYCOMPA at doses of 8 mg and 12 mg/day, respectively, compared to 2% of placebo-treated patients. These adverse reactions occurred mostly during the titration phase.

Somnolence and Fatigue

FYCOMPA caused dose-dependent increases in somnolence and fatigue-related events. Somnolence was reported in 16% and 18% of patients randomized to receive FYCOMPA at doses of 8 mg and 12 mg/day, respectively, compared to 7% of placebo patients. Fatigue-related events were reported in 12% and 15% of patients randomized to receive FYCOMPA at doses of 8 mg and 12 mg/day, respectively, compared to 5% of placebo patients. In the controlled Phase 3 epilepsy clinical trials, these adverse reactions occurred mostly during the titration phase. Patients should be advised against engaging in hazardous activities requiring mental alertness, such as operating motor vehicles or dangerous machinery, until the effect of FYCOMPA is known.

Falls

Falls were reported in 5% and 10% of patients randomized to receive FYCOMPA at doses of 8 mg and 12 mg/day, respectively, compared to 3% of placebo-treated patients.

Withdrawal of AEDs

A gradual withdrawal is generally recommended with antiepileptic drugs to minimize the potential of increased seizure frequency.

Most Common Adverse Reactions

In clinical trials, the most frequently reported dose-related adverse reactions in patients receiving FYCOMPA 8 mg or 12 mg vs placebo (greater than or equal to 4% and at least 1% higher than the placebo group) included dizziness (36% vs 9%), somnolence (16% vs 7%), fatigue (10% vs 5%), irritability (9% vs 3%), falls (7% vs 3%), nausea (7% vs 5%), ataxia (5% vs 0%), balance disorder (4% vs 1%), gait disturbance (4% vs 1%), vertigo (4% vs 1%), and weight gain (4% vs 1%).

Drug Interactions

FYCOMPA may decrease the efficacy of contraceptives containing levonorgestrel. Plasma levels of FYCOMPA were decreased when administered with carbamazepine, phenytoin and oxcarbazepine. Concomitant use with strong CYP3A inducers such as St. John's wort and rifampin should be avoided. Multiple dosing of FYCOMPA 12 mg/day enhanced the effects of alcohol on vigilance and alertness, and increased levels of anger, confusion, and depression. These effects may also be seen when FYCOMPA is used in combination with other CNS depressants.

Pregnancy Category C and Lactation

FYCOMPA should be used during pregnancy only if the potential benefit justifies the potential risk to the fetus. Physicians are advised to recommend that pregnant patients taking FYCOMPA enroll in the North American Antiepileptic Drug (NAAED) Pregnancy Registry. Caution should be exercised when FYCOMPA is administered to a nursing woman.

Hepatic and Renal Impairment

Use in patients with severe hepatic or severe renal impairment is not recommended. Dosage adjustments are recommended in patients with mild or moderate hepatic impairment. Use with caution in patients with moderate renal impairment.

Drug Abuse and Dependence 

FYCOMPA is a Schedule III controlled drug substance and has the potential to be abused or lead to drug dependence.

Please see the FYCOMPA (perampanel) CIII Full Prescribing Information

About Epilepsy
Epilepsy is a medical condition that produces seizures affecting a variety of mental and physical functions. According to the Institute of Medicine, epilepsy is one of the most common neurological disorders, affecting 2.2 million people in the United States. About 60 percent of people with epilepsy have partial-onset seizures. In about 25 to 30 percent of patients with epilepsy, seizures cannot be controlled with treatment.

About FYCOMPA (perampanel)
FYCOMPA is an oral medication and is the first FDA-approved non-competitive AMPA (alpha-amino-3-hydroxy-5-methyl-4-isoxazolepropionic acid) glutamate receptor antagonist. Glutamate is the primary excitatory neurotransmitter in the central nervous system. The precise mechanism by which FYCOMPA exerts its antiepileptic effects in humans has not been fully elucidated.

Discovered and developed by Eisai, FYCOMPA has been approved in more than 30 countries.

FYCOMPA will be supplied as 2 mg, 4 mg, 6 mg, 8 mg, 10 mg and 12 mg film-coated tablets.

Epilepsy is a therapeutic area of focus for Eisai. The company continues to make further contributions to help address the diversified needs of epilepsy patients and their families as part of its corporate human health care (hhc) mission.

Eisai Inc.
At Eisai Inc., human health care is our goal. We give our first thoughts to patients and their families. As the U.S. pharmaceutical subsidiary of Tokyo-based Eisai Co., Ltd., our passionate commitment to patient care is the driving force. We are a fully integrated pharmaceutical business with discovery, clinical, manufacturing and marketing capabilities. Our key areas of commercial focus include oncology and specialty care (Alzheimer's disease, epilepsy and metabolic disorders). To learn more about Eisai Inc., please visit us at www.eisai.com/US.

Eisai Inc. has affiliates that are part of a global product creation organization that includes R&D facilities inMassachusetts, New Jersey, North Carolina and Pennsylvania, as well as a global demand chain organization that includes manufacturing facilities in Maryland and North Carolina. Eisai's global areas of R&D focus include neuroscience; oncology; metabolic disorders; vascular, inflammatory and immunological reaction; and antibody-based programs.



Media Inquiries

Investor Inquiries


Laurie Landau

Alex Scott


Eisai Inc.

Eisai Inc.


201-746-2510

201-746-2177


Laurie_Landau@Eisai.com

Alex_Scott@Eisai.com











To view the multimedia assets associated with this release, please click: http://www.multivu.com/mnr/64835-eisai-fycompa-perampanel-ciii-adjunctive-treatment-partial-onset-seizures

©2012 PR Newswire. All Rights Reserved.

Tuesday, December 31, 2013

Two Brothers Receive Angels4Epilepsy, Inc. & Asthma Too Deliveries from Sisters


Two more cuties receiving their gifts from the girls this past Christmas.  The girls had a great year helping to deliver over 58 stuffed animals which mostly contained the book written by Jamie about her epilepsy and an USB medical history bracelet since August.  Stuffed animals ranged from the Kohls Cares for Kids line, Build-A-Bear and Disney.  The girls and our wonderful volunteers also delivered over 100 stuffed animals to hospitals in Indiana, Texas and New Mexico to include the El Paso Ronald McDonald House.  2013 has been a wonderful year and we look forward to 2014.  Thanks for being part of our page and memories!

Sunday, December 29, 2013

Angels4Epilepsy, Inc. & Asthma Too Sisters Delivers to Child with Epilepsy



This adorable one is a little trooper fighting epilepsy and even has his own awareness page. His mom is a super hero in my eyes!  The girls loved seeing the big smile after receiving his PetSmart donated Chase dog along with an USB medical history bracelet and the book written by Jamie. The girls always say how they love their job! Thanks to Lil' B's wonderful mom for sharing this picture of her handsome young man.

The Department of Veteran's Affairs Epilepsy Center of Excellence: Patient Education Slides and Videos

The Department of Veteran's Affairs Epilepsy Center of Excellence provides patient slides and audio programs for those with epilepsy along with other programs:

Video Presentations


Audio Presentations




Epilepsy: What Actually Happens?

Notice: When you click on a links provided below, you will be leaving the Department of Veterans Affairs Website. The VA does not endorse and is not responsible for the content of any of the links listed below. Please refer to the VA's official disclaimer at: 


http://www.va.gov/disclaim.htmYou Tube: Epilepsy: What Actually Happens?


The ECoEs and the Anita Kaufmann Foundation

The VA Epilepsy Centers of Excellence and Anita Kaufmann Foundation Collaboration

The VA Epilepsy Centers of Excellence are collaborating with the Anita Kaufmann Foundation in an outreach program to Veterans with epilepsy and traumatic brain injury (TBI) titled "Heads Up For Vets". This is an opportunity for the ECoEs to partner with a community advocate to help educate and promote awareness to the public on issues related to Veterans with epilepsy and TBI. For more information and resources on the outreach program please click here.

Epilepsy Phenome/Genome Project

Notice: When you click on a links provided below, you will be leaving the Department of Veterans Affairs Website. The VA does not endorse and is not responsible for the content of any of the links listed below. Please refer to the VA's official disclaimer at: http://www.va.gov/disclaim.htm

A consortium of epilepsy centers and the National Institute of Neurological Disorders and Stroke (NINDS) working to identify genes that influence the development of epilepsy and drug responsiveness.

For more information, please read the documents below:

Patient Brochure
Eligibility Card

Anticonvulsants Associated with Stevens-Johnson Syndrome


I was reading a news story out of the United Kingdom of a seven year old boy taking an anticonvulsant for his epilepsy when 12 days later, he developed a headache, cold and a rash. His entire body burst into blisters before his hair and finger and toe nails fell out - leaving him looking he had been burnt alive.  He has lost all his skin.  He is suffering from rare condition called Stevens Johnson Syndrome (SJS) which causes the cells in skin to die before shedding.  Apparently this adverse event is associated with anticonvulsants but according to the article, it is not marked on the drugs as it is in the United States.  I had not heard of this before so I wanted to share.  This news story was published on December 28, 2013 and can be found here.  I will forewarn there are some graphic pictures of the little one fighting this terrible condition.

The child was prescribed epilepsy drug Carbamazepine, which is sold as Tegretol® and manufactured by Novartis.

The drugs company today said Toxic Epidermal Necrolysis (TEN) and Stevens Johnson syndrome (SJS) are listed on the summary of product characteristics. A Novartis spokeswoman said: 'Novartis is committed to patient safety and strictly complies with local and international regulations and pharmacovigilance guidelines. 'For all its products, Novartis evaluates and reviews its global safety database on an ongoing basis.' She added: 'The decision to prescribe Carbamazepine is between an appropriately qualified healthcare professional and the patient or appropriate caregiver.'

The NHS website lists SJS and Tens as 'very rare' side effects from taking Carbamazepine. It states that 'fewer than 1 in 10,000 people' get the condition. The advice reads: 'Stevens-Johnson syndrome or toxic epidermal necrolysis - these may be fatal. Seek immediate medical advice if you develop severe skin reactions”

According to epilepsy.com, drugs commonly associated with Steven’s-Johnson Syndrome include:
  • Anticonvulsants -- Phenobarbital, Dilantin, Lamotrigine, Tegretol, Phenytoin , Carbamazepine, and Valproic acid
  • Antifungals, Antivirals and Anti-gout medications (Allopurinol)
  • Nonsteroidal Anti-Inflammatory Drugs (NSAIDs) -- Naproxen, Ibuprofen
  • Sulfa antibiotics and Penicillins, used to treat infections
  • Barbiturates and Cocaine, not surprisingly, are also on the list.
And SJS has also been consistently reported as an uncommon side effect of herbal supplements containing Ginseng!

In short, just about any drug is a potential cause.



Friday, December 27, 2013

Boy Who Suffered Up to 50 Epileptic Seizures a Day Enjoys Christmas Without Fits Thanks to Fat Diet


Ben Fountain had to wear a helmet because seizures were so violent he once broke a leg - he now steers clear of carbohydrates and instead has a largely fat-based diet

A boy who suffered up to 50 seizures a day enjoyed this Christmas with no fits after a radical change to his diet.

Epileptic Ben Fountain, five, had to wear a helmet because his seizures were so violent he once broke a leg.

Diagnosed two years ago, Ben was resistant to drugs he was prescribed. But he has not had a fit in six months after following the high-fat ketogenic diet.

The special diet, which is carefully monitored at Nottingham’s Children’s Hospital, means Ben must steer clear of carbohydrates and instead has a largely fat-based diet with meals such as scrambled eggs and chicken with mayonnaise.

Mum Juliet, 43, of Woodthorpe, Nottingham, said: “Ben had a normal birth and, out of the blue, he had this horrific fit.

"One month later, he had another and they seemed to get more and more frequent - it was heartbreaking to see.

“The medication didn’t seem to stop the seizures and turned him into a zombie. It felt as if our little boy was slipping away.”

She added: “We had hit absolute rock bottom, so I started researching alternative treatments and found the ketogenic diet, which was offered at the hospital thanks to the Daisy Garland charity.

“The whole thing just feels like a bit of a miracle.”

Originally developed in the 1920s in America, the diet went out of favour following the discovery of anti-seizure drugs. It is formulated to mimic the effect of fasting.

When the body uses fat for energy instead of glucose, it produces ketones, which prevent seizures.

Juliet said: “Our beautiful, lively and sociable Ben was slipping away in front of our eyes. The medication he was on left him irritable, grumpy, lethargic and badly behaved - he was like a zombie.

“I felt really guilty as a mother giving my son this unhealthy food.

“It went against everything I had been told was right and responsible as a parent but, on the other hand, it’s meant he’s stopped having seizures, so it really is a case of weighing up what’s best for Ben.”

Dad Mark said: “His development started to regress and he would need supervision even to go to the toilet, as he may have a seizure and fall into or off the toilet. “But it’s like we have Ben back now.”

He added: “It was so nice when we went on holiday to Brittany and he could run around and play. “It all just feels like a bit of a miracle really.”


Check out all the latest News at Mirror.co.uk http://www.mirror.co.uk/news/uk-news/ben-fountain-epileptic-boy-who-2962790#ixzz2ogt92CcC 

Another Young Life Lost to SUDEP - Epilepsy


By Joette Kunse, The Oakland Press

POSTED: 12/26/13, 3:34 PM EST |

SUDEP is thought to be the cause of the recent death of Clarkston native Katherine “Kate” Woloson, a vibrant 27-year-old engineer working for the Clorox Co. in Baltimore, Maryland.

Kate was the daughter of Henry and Diane Woloson of Clarkston.

SUDEP, the acronym for Sudden Unexpected Death in Epilepsy, is a relatively unknown term to medical personnel and families of patients with epilepsy, according to Cindy Wright, Director of the SUDEP Institute, Epilepsy Foundation.

With the shock of Kate’s death for her family, the Wolosons are concerned that many patients with epilepsy and their families are not aware of SUDEP as they were not.

While the statistics say one in 1000 persons die from SUDEP, if a person with epilepsy does not take their medication as prescribed, the odds can increase to one in 150 persons. Kate was taking her medications at the time of her death but SUDEP is a risk for all persons with epilepsy.

“SUDEP has been known for a long time but not a lot of attention has been given to it,” said Wright.

Kate Woloson, was an energetic young woman, who loved to travel, planning her next adventure, a trip to Dubai this fall with her sister and friends, and was always a “charmer” according to her family.

When Kate was a toddler, Diane Woloson had observed her daughter’s eye twitching and from her background in the medical field suspected something was amiss. The diagnosis was epilepsy.

Epilepsy is described as a medical condition that produces seizures affecting a variety of mental and physical functions. It’s also called a seizure disorder. When a person has two or more unprovoked seizures, they are considered to have epilepsy according to the Epilepsy Foundation. One in 10 people have a seizure in their lifetime according to the Foundation.

Kate lived with her diagnosis of epilepsy, played tennis for Clarkston High School and graduated as a packaging engineer from Michigan State University in 2007 and traveled the world said her parents. She had a generous nature and was known to purchase lunch for servicemen anonymously.

The Woloson’s say that Kate as an adult was managing her epilepsy. There were times in college when she did not take her medicine due to the side effects according to her parents. Prior to her death, she had made visits to a neurologist in Baltimore to discuss some symptoms she was having. The parents say, Kate’s MRI and EEG were within normal ranges six weeks before she died, the last time she was checked.

If Kate’s family had been aware of SUDEP, they contend they could have at least talked with her about it. But according to the Wolosons, doctors tend not to want to discuss SUDEP because they feel it is rare and don’t want to worry the patient and family unnecessarily. Wright says SUDEP is not part of the training for neurologists and medical professionals that may be treating patients with epilepsy.

SUDEP is similar to SIDS and there doesn’t seem to be advanced warning according to Wright. Wright estimates that 3,000 to 5,000 people die from SUDEP each year.

“There is a general lack of awareness by neurologists, general practioners and medical examiners about SUDEP,” according to Wright.

“Patients with epilepsy between 20 to 40 years of age seem to be more at risk for SUDEP,” said Wright.

While researchers can’t pinpoint the cause of SUDEP, several factors seem to be related. Wright says, “Having more seizures seem to be a sign that you are ‘at risk’ for SUDEP. Stress, lack of sleep, and use of drugs or alcohol are triggers for seizures, so a person with epilepsy wants to minimize the risk of more seizures and reduce the triggers.”

Both Wright and Russell Derry, Director of Education for the Epilepsy Foundation of Michigan say “focusing on what you can control to reduce your seizures is important in reducing SUDEP.” They urge individuals with epilepsy to take their medications as prescribed and keeping a seizure journal to identify triggers for seizures.

Wright says, “Epilepsy is by nature out of the patient’s control, but you can focus on what you can do.” Wright shared that patients having more knowledge about epilepsy is important and becoming aware of the risks of the disease including SUDEP. The Wolosons agree and say,”learn all you can about the disease.”

The SUDEP Registry is working to research the sudden deaths of persons with epilepsy. They collect data on the person’s seizure history and tissue in the first 48 hours after death for research. Many times, this is difficult because medical examiners have not heard of SUDEP and other causes are listed for death.

Wright says, “The public does not think people die from epilepsy.” She shared that research for SUDEP is hampered by lack of funds because of this belief. The SUDEP Institute is working to create more awareness that epilepsy can cause death and promote more research.

Both the Wolosons and Wright are empathic that “Reaching one person with information about SUDEP matters!”

FYI

SUDEP Institute, www.epilepsy.com/sudep, 720-222-3125; Epilepsy Foundation of Michigan www.epilepsymichigan.org; 800 377 6226; CUREpilepsy.org (800) 765-7118

Thursday, December 26, 2013

Girls Taking a Break from Delivering to Children with Epilepsy and/or Asthma


The girls took a break from packaging gifts to be sent to children with epilepsy and/or asthma.  They had a little Grinchmas party fun on Christmas day and were happy with what Santa brought them this year.  We hope everyone had a Merry Christmas and here are hopes and prayers for a cure for Epilepsy.



Angels4Epilepsy, Inc. & Asthma Too Sisters Deliver to Another Child with Epilepsy and/or Asthma in Time for Christmas


Isn't she just adorable?  She received her gift package right before Christmas.  We went out 11 packages before Christmas and are hoping to see and share many more pictures.  The girls wanted to deliver to children with epilepsy and/or asthma.  Their sister, brother-in-law and niece delivered to two hospitals as well before Christmas.

angels4epilepsy.org