Tuesday, April 15, 2014

Seize: The Story - Jessie Christensen

Jessica was born a beautiful child and developed normally and hit all milestones just like she should until she had her first seizure at 9 months old. Her second and third followed, and in the first year she had 8 seizures. We started her on medication as advised by the doctors, but the seizures continued. Each year the seizures increased in number and severity as well as developing differing types of seizures. By the age of 3 Jessica was no longer developing normally, but starting to decline in her cognitive abilities and the drugs she was on were making the seizures worse not better. She was having long status seizures and then being paralyzed after for hours or days. We took her to the Institutes for the Achievement of Human Potential in Philadelphia to try to reverse the brain damage and get a handle on her seizures. There we learned about cross-lateral patterning, and masking. The patterning helped with her coordination and the masking helped to keep the seizures shorter. but they continued.

At age 5 we took her to UCLA to see if she would be a surgical candidate, but were told the seizures were not localized to one place in the brain. She was on 6 seizure drugs at this time. The doctor's didn't know what to tell us as they couldn't diagnose her with anything other than idiopathic/intractable Epilepsy. Basically that means we don't know and can't control it, so sorry. We tried many other non-traditional therapies, some of which helped a little, but most which didn't help at all. She was eventually diagnosed at 7 1/2 years old with Dravet Syndrome. By this time she was having over 1200 seizures per year, sometimes as many as 30 per day. We travelled to Chicago to see the foremost specialist on Dravet Syndrome, Dr. Laux, and get advice as to what we should do for Jessie. She advised us as to the medications that seem to work the best and we worked to get Jessie on those three or four medications. Jessie has been on 17 anti-epileptic medications and the Ketogenic diet as well as many vitamins and supplements suggested by her doctors. She is now 14 still having daily seizures, although not as many, and functions at a 3 year old level.

Jessie loves to color and paint, do puzzles and matching games, bake cookies and brownies play at the park and watch videos. She loves her brother Matthew and her Grandpa. She has two golden retrievers named Shadow and Pillar and she loves to be with them as much as possible. They are very patient and gentle and allow her to lay all over them. Jessie loves her friends from school and always wants to go play at their houses. She is a pro at the iPad and can learn things on it we haven't been able to teach her through traditional methods at school. We love having her in our family.

Monday, April 7, 2014

Seize: The Story - Hanna Maria

My 9 year old girl miss Hanna Maria was born normal. Then when we went in for her first set of immunizations shots and within 12 hours after getting them, she started having seizures. These started out just in the face but by the next night they were full body seizures (Tonic/Clonic). 

Our local ER, that we went to that night, told us: 'they are face twitches, everyone has these'. 

I said: "What? I have never seen anyone with those."

The next day, she was not any better so I took her to her regular Doctor and he told me same thing, adding what a seizure really would look like (full body). And sure enough, that night, she had the first full body seizure. 

By the time we made it to see the Doc that specializes in this kind of stuff (at Primary Children's Hospital) they said: yes, these are seizures and they are called 'face seizures'. 

At age 6 months, we were having 80 to 90 seizures a day. From age 1, they said she was Developmentally Delayed and by age 3 they said she had CP.  At 3 1/2, we found out she also had Scoliosis. She had 2 rods put in her back at age 5. By 6, she got a Vagus Nerve Stimulator, to help with the seizures.  With the VNS and 5 meds, we now have only 8 to 15 a day. 

We where G-tube fed for awhile, and also had a GJ tube, but in the last year she can not do any kind of feeds, so we are on TPN through a central line. 

No matter what life has thrown her way, she is a strong little girl and I would not change my life for anything. I love her so much for she is my whole world.