Ellie's Bells: December 2013

Ellie had her first seizure when she was five weeks old. It was on December 15th, 1994, early in the morning. That evening we found ourselves at Primary Children's Hospital and Ellie's tiny little body was undergoing many tests. We left the hospital with many questions and no answers. We did not know what was causing her seizures and neither did the doctors. She started to take medication to help control the seizures, but her seizures continued to break through and occurred frequently as she was falling asleep. Ellie continued to develop throughout her first year of life and we visited several doctor offices trying to find an answer to the cause. Many doctors had different opinions, but none of them were able to pinpoint the problem or control the seizures. We explored different types of treatment for Ellie including mainstream medication, alternative treatments, and homeopathic remedies. Every time we tried a new treatment, we would hope for improvement, only to have the results end up in disappointment. It wasn't until she was 8 months old that her neurologist said that her seizures resembled "Infantile Spasms", but that her EEG (electroencephalogram) did not correspond. I had never heard that word before, so I went home and looked up the meaning in a small medical book. It read something like the following: A severe seizure disorder that leads to severe retardation. Not a very promising prognosis. A few more months went by and we were enjoying Ellie's smiles and her laughter. Ellie's seizures were very sporadic at the time, sometimes occurring five times a day or two times a week. The last pictures that we have of Ellie smiling was on her one year old birthday. Then we began to see a slow decline in our little daughter's development. Her seizures began to increase in frequency and severity and within two weeks everything that Ellie was able to do physically and mentally slipped away. Her smiles were gone, her sweet laughter, her ability to look at us and show us that she recognized who we were. She no longer could play with her toys, eat food on her own or sit up without support. We were devastated and at such a loss. After visiting with the neurologists again at PCMC, we were told that Ellie's EEG now showed hypsarrhythmia which meant she now was diagnosed with Infantile Spasms. Here is a brief definition: "Infantile spasms (IS) is a rare, yet devastating condition. A catastrophic childhood epilepsy syndrome characterized by both spasms and hypsarrhythmia. Untreated or unsuccessfully treated IS can lead to cognitive and developmental impairments." We tried adrenocorticotropic hormone (ACTH)first which was a nasty steroid shot that we had to administer twice a day. Her body did not even flinch when we poked her chubby little thighs with the needle. ACTH was suppose to be the drug to fix the IS, but it didn't work either. Next we found ourselves at UCLA Medical Center where Ellie went through a procedure where she had continuous EEG monitoring and a PET scan. We were hoping at this point to find the source of the seizures in her brain and hopefully operate and take the damaged part out. However, her seizures could not be pinpointed to a specific section of her brain and surgery was no an option. Next we traveled to Houston, Texas and saw the best neurologists. We tried several new medications and again nothing helped. Some of the medication had nasty side effects while others did help for a short period of time. Back at PCMC Ellie started the Ketogenic Diet. We had some success with this diet which we tried for three years, but again did not find total seizure control. Ellie had a gastronomy tube placed to help her get proper nutrition since her ability to swallow water and food became limited. When Ellie turned three years old, she had been hospitalized with pneumonia at least six times. She was still having seizures every day. When Ellie turned ten years old we tried another procedure to help her with the seizures. She had surgery for a Vagus Nerve Stimulator to help reduce her amount of seizures. I felt that this procedure was an answer to our prayers because her seizures were dramatically minimized. However, after a few months, the seizures slowly began to return. She has had two broken legs and we are unsure how either of them happened and she was life-flighted to PCMC due to a collapsed lung the summer of her 6th grade year. As Ellie grew and matured, her diagnosis was changed from Infantile Spasms to Lennox-Gastaut Syndrom or LGS. I have come to learn that LGS can effect many kids at different levels. Some children who have LGS may live a normal active life with seizures, while other children may be like Ellie. I wish that I would have kept a better detailed journal of all the medications Ellie has taken and what kind of control she was receiving. Her seizures continue to occur frequently, most commonly before she goes to sleep and sometimes several throughout the day. When she has a seizure we will hold her hand, tell her that we love her, wipe her mouth and make sure that her body is protected and she can't hurt herself. I have so many other thoughts to share about Ellie which will come in later blog posts. Please ask me questions if you have any regarding your child who may suffer from seizures of Lennox-Gaustaut Syndrome.

Ellie's Bells

Thursday, December 5, 2013

Living with Lennox Gastaut Syndrome and Infantile Spasms

Pay It Forward: Ellie Hayward | KUTV.com

Wednesday, December 4, 2013

Ellie's Bells 2013

Tuesday, December 3, 2013

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From Grandma Sunnie