Praying for Progress

By Gail of the blog: Us, Dezh and Dravet Syndrome.

Nadezhda was born on May 19, 2007 after a fairly normal pregnancy, although she was 11 days early. She was 6 lbs 10 oz. She had a high fever of 103 F because I, her mom, had a fever of 104 F. Immediately she had a struggle to breathe and her blood-oxygen saturation level was much lower than healthy. But after 2 hrs she was perfect and healthy without any issues.



On the second day of her life she got jaundice and we used bili-lights to bring down her bilirubin level. At 4 months she started wearing a helmet to reshape her head. She wore this for 5 months total. We also started to notice delays at about 4 months. She couldn’t hold up her head very well on her own. She didn’t sit up on her own until after 10 months. She didn’t crawl until 1 year and didn’t walk until 22 months or so.



Her first seizure was on February 6, 2008. She had a slight fever due to getting her first tooth. This seizure was over an hour long. They gave her so many drugs to try to stop the seizure in the hospital that she had to be intubated. Every possible test was run with no reason for her to have a seizure. We were life-flighted to Primary Children’s Hospital where we stayed in the neuro unit for 4 days. We were sent home with instructions to use diastat if another seizure was to occur but they felt it was simply a febrile seizure and it was unlikely to happen again.

Two months later, on the last day of our first family vacation, we awoke to her having another seizure. I thought this one was caused because I put her in pajamas that were too warm for the warm weather. We were hospitalized in the same hospital for just 2 days this time. They sent us home with her on Phenobarbital for seizure control and a new rescue medication.

After this we had about 1 seizure per month that would land us in the ER and often require an overnight stay in the hospital. These seizures were usually caused by an illness with a fever. She seemed to have a very low febrile seizure threshold.

Eventually seizures started to happen without a fever. Also different types of seizures, besides the tonic-clonic and myoclonic, started to show up. We saw partial and complex partial seizures, which were often on just half of her body, or half or all of her face. We also saw these in just her eyes. She also had absence seizures, though these were harder for us to be sure whether they were seizures or not.

Our wonderful doctors at Primarys did some tests to figure out the cause of the seizures. When Nadezhda was about 1½ years old we finally had a "working diagnosis" of Alternating Hemiplegia of Childhood. This could only be truly diagnosed by the process of elimination, which turned life into a waiting game.



When she was just over 2 years old we moved to Kentucky and took her into the neurologists at the University of Kentucky. Our first doctors were great and willing to do many tests but wanted to start over to be sure no simple explanation for the seizures had been missed. However, we got a call from Nadezhda’s previous neurologist. She told us that she had just attended an epilepsy conference in Ohio and had learned about a disease called Dravet Syndrome that she thought fit Nadezhda’s symptoms very closely. She told us that if Nadezhda was still her patient she would pursue this diagnosis and suggested we ask our doctor to do the genetic test to find if this was her disease.

So we did ask our new neurologists to perform this test but they didn’t think it was likely to be Dravet Syndrome and that it didn’t fit her symptoms well enough to pursue, so they opted to start from the beginning and redo many test. Curtis, Nadezhda’s dad, was not willing to take this extra time and the step back to look at all the same tests again. He asked again with the same response. Somehow after our second appointment we got switched to a new neurologist, Dr. Khan.

At our first appointment with Dr. Khan, Curtis asked if he would do the test on Nadezhda to see if she had Dravet Syndrome. He thought for a moment and agreed that her symptoms were enough like Dravet Syndrome symptoms that it was worth doing the test. He made the appointment and we got the test done.

Just over 2 weeks later we got a call from Dr. Khan, telling us that her test was positive for Dravet Syndrome. We had another appointment with Dr. Khan where he explained Dravet Syndrome to us. He also told us that he had had 7 other Dravet Syndrome patients up north where he previously worked. He put Nadezhda on Depakote, which proved to be helpful. But soon after we added Clobazam, a med from Canada, which was also very helpful. She has also tried Topamax and Keppra but has been weaned off both these. We are starting to wean her off of the Phenobarbital now. It will take several months to finish with the Phenobarbital wean but we think it will be beneficial for her.




Now, rather than 30 minute seizures to 1 hour 45 minute seizures, they are 1 – 3 minutes long. She still has all types of seizures but they are much shorter and still only occur a few times each month. This is a great improvement obviously. She continues to progress physically and mentally although progression is slow. She has never digressed, thankfully, and we pray that her progression continues.

Purple Day

Epilepsy Awareness, or Purple Day, is March 26th. That's tomorrow! Remember to wear purple ribbons and/or shirts in support of anyone you love who may be affected by epilepsy.

Purple Day was founded in 2008, by nine-year-old Cassidy Megan of Nova Scotia, Canada. Cassidy chose the colour purple after the international colour for epilepsy, lavender. The lavender flower is also often associated with solitude, which is representative of the feelings of isolation many people affected by epilepsy and seizure disorders often feel. Cassidy's goal is for people with epilepsy everywhere to know they are not alone.

Click here to listen to Cassidy's Song by Josh Kammerman. Go here to find out more about Cassidy and Purple Day, including resources, events, inspiring stories, and facts about the disorder.

Here is a first aid chart with simple rules to remember if you're around when someone experiences a seizure. Please take the time to read and share this! Education is empowerment!


*First Aid Chart care of Edmonton Epilepsy Association

Born of My Heart

by Brandi from the blog Born of My Heart.

Brandon and I (Brandi) tried to conceive for five years. Years of doctor appointments, infertility drugs, and negative preganancy tests were just too much to handle. We started praying about adoption. We began to look into agencies, and we became foster parents. The next two years flew by. We had two failed adoptions that were both heartbreaking, so we decided to put adoption on hold for a while.

That's when I read my email. A wonderful woman, whom we had worked with in adoption before, asked us to view the profile of a special needs little boy. We did. We saw his picture and fell in love in what we knew was our son. ~~~There is defiantly more to this story but that is another story in and of itself~~~

Joshua Matthew Lee became our son on September 17, 2009. He had a tragic little life and needed lots of love. Matthew (as we call him) was born on time, perfectly healthy! He went home to his first adoptive parents at two days old (my birthday) and was their miracle boy. At three months of age Matthew was not meeting his milestones. He was not making eye contact, had very little head control, and did not smile. An MRI then showed what would become the beginning of his diagnoses. Matthew has Agenesis of the Corpus Callosum, Agenesis of the Septum Pellucidum, Septo Optic Displaysia, Cortical Visual Impairment, Optic Nerve Hypoplasia, Epilepsy, Cerbral Palsy, Low Tone, Photophobia, Bilalteral Schizencephaly, and global developmental delays.



Matthew's first adoptive family did not feel they could parent a special needs child. After seven weeks in private foster care, we brought Matthew home. Our sweet boy is a miracle. We were told he would not smile socially~he laughs. We were told he would never make eye contact~~he tries. We were informed he would never be mobile~~we have video of him attempting to crawl. Matthew is now seventeen months old. He still has little head control. He has 100+ seizures daily even with two anti seizure meds and the Ketogenic diet. Developmentally he is still an infant. But labels have never been our "thing." We choose to see him for the beautiful, sweet, kind hearted boy who enjoys laughing while his sister cries. He will hold your hand and in doing so grab hold of your heart.

Little did we know, but eleven days after we brought Matthew home, his sister was born. Lillian Autumn Grace was born anywhere between 28-32 weeks gestation and addicted to cocaine. Her birthmom relinquished rights and Autumn (as we call her) was available for adoption. We knew about her, but were not in a position to adopt so soon. We prayed for her. She was a rockstar. She stayed just over six months in the NICU before finally being discharged in March. Autumn was born addicted to drugs and had failure to thrive. She was a measly 3 lbs 4 oz at birth. She had suffered a stroke to her spine in utero that has left her paraplegic. Her legs are "deformed" and her feet are clubbed. She has undergone three surgeries to correct the strictures that were in her intestines, and has sailed through them all.



In March our prayers were answered, and we knew Autumn was our daughter. We became a family of four in April 2010. Autumn is cognitively intact and is blossoming. She is still quite small for her age, but is crawling everywhere. She will not be able to correct the deformity in her legs or her clubbed feet and will never walk. She will not let that hold her back. Next week she turns a year old. We are constantly reminded at just how beautiful and fragile life is when looking at our blessed babies.



We never intended to adopt special needs children. All we knew was we were meant to be a mommy and a daddy. We now know that our children have taught us more than we ever knew possible.

Artilepsy

The Epilepsy Association of Utah and the University of Utah Clinical Neurosciences Center present Artilepsy, an exhibition of original artwork, photography and home crafts by people of all ages living with Epilepsy. This evening illustrates the profound effect that epilepsy can have on human life and the courage, humor and imagination many show in facing it.

Entry forms can be found here.

Letters will be mailed throughout Utah inviting people to submit their original artwork to The Epilepsy Association of Utah by October 1st. If you would like to help spread the word, contact the EAU at (801) 566-5949.

Expressions of Courage

The other day in a typical doctor's office, I saw a not-so-typical coffee table book. Its lovely artwork captured my attention. A closer look revealed that although the images were beautiful, the story behind the images was even more beautiful.

Sunflower Days by Darla T.
Winner, 2009

Expressions of Courage is an organization created with the goal to provide a way for people with epilepsy to express themselves through art. The program includes people of all ages and distributes the artwork in holiday cards, calendars, and coffee table books.

The artwork symbolizes the spirit of the millions of people who have been diagnosed with epilepsy. It is truly an expression of courage.

Anyone with epilepsy, of any age, may enter the Expressions of Courage contest. See Rules and Registration for more information.

Angels 4 Epilepsy

by Judy of Youthful Tips.


In June 2008, both my daughters, then ages 1 and 5, were diagnosed within two weeks of each other with an unknown immune/pulmonary issue and benign rolandic epilepsy BRE). Both children continued to have hospitalizations, testing and numerous doctor appointments. To date, both girls take two daily medications to help with their conditions. My youngest nearly died and was intubated for 10 days in November of 08. She's more stable now thankfully!

Jamie never had any seizure issues prior to the one morning in June of 2008. Out of the blue, she was lying still and almost asleep when what appeared to be a right side stroke was hitting her. After a hospitalization, she was diagnosed with BRE which is a type of epilepsy that doctors do not know what caused seizures and most outgrow it after puberty. We had to keep trying different doses and different medications until we finally found Keppra worked to stop the seizures. Keppra, twice a day, is our savior and luckily, to date, she has not required her rescue medication as she's not suffered a grand mal. She still has developmental delays and had to repeat kindergarten. The medication or condition has definitely impacted her ability to speak and focus but she prevails through her art, her writing and desire to help others.

Jamie was recently diagnosed with Pediatric Migraines and Pediatric Insomnia which added to her daily regiment of medidations.



During Jamie's sleep study to determine a follow up of her seizures, a couple of groups of people provided support to the children at the local children's hospital's epilepsy ward. Their act of kindness provided us with a more enjoyable couple of days of playing games, playing puppets and talking about the fun things we were able to do. She's a very creative person and it was just after this stay, she wrote her first book, The Gorilla on the Swing, which was self-published.

Available at Create Space
Proceeds donated to the Angles4Epilepsy program

Jamie wanted to take her work one step further and starting this Easter, she will be delivering tote bags full of toys, snacks and other goodies that kind people have donated via her website, angels4epilepsy. Her wish is to do this twice a year, if not more, to help other children with chronic conditions who are in the hospital.

If you would like to contribute to Jamie's mission, please send an e-mail to angels4epilepsy@yahoo.com.