Laura - posted on 01/04/2010 ( 1 mom has responded )
Hi everyone, I have been wanting to share Sara's story for awhile now and have finally decided to sit down to write it!
Sara was born full term "au natural" on August 7th 2001, she weighed 7lbs 11oz and was a wonderful, healthy, perfect little girl.
Our first year with Sara was all on schedule, she never had any setbacks and reached all her milestones when she was "supposed to".
On October 19th 2002, Sara became suddenly very ill, she had a high fever and was very lethargic, I drove her to the ER and she was admitted into WGH with Bronchiolitis for two days. We went home with antibiotics and orders for her to rest and drink lots of fluids. A few weeks passed and one Saturday morning she slept longer than usual, I went in to her room to find her sitting up in her crib (slumped over) in a convulsive state (though I had no idea at the time, my husband had to explain to me that she was having a seizure ~ I was 24 and had never seen one). I called an ambulance and she was again taken to WGH, they gave her something (Lorazepam) to stop the seizure and took some x-rays. She had Pneumonia. We were transferred to Children's Hospital in London where they did lots of tests and grilled us for hours about all her medical history, family history and so on. We spent 3 days there and were sent home. A couple of weeks passed and she had another seizure, with a fever again, back to WGH and then transfered to London again. This time in Children's Hospital we met Dr Simon Levin and his Nurse Practitioner. They explained to us that they felt after three significant seizures that our daughter should be diagnosed as having Epilepsy.
We left the hospital a few days feeling very sad and guilty and all sorts of other emotions. You feel like you have just lost your child in some ways. Sara had been put on Dilantin and she had an EEG and an MRI done while in the hospital. As an outpatient she also had a CT Scan.
While on Dilantin for the year between her 2nd and third birthdays she was seizure free. Our family physician told us we could take her off the medication but didn't explain that she needed to be weaned, we stopped it cold turkey. She had a seizure about 7 days later that lasted about 45 minutes, it was bad. We were sent back to Children's Hospital and got lectured by the Neurlogist (like we knew you couldn't just stop it) and she was put back on the Dilantin. She continued to have seizures and we kept trying to get the Dilantin to work but eventually we couldn't increase the dose anymore and we had to switch to something else.
Sara has tried eight drugs up 'til now (she is eight years old). We have had numerous seizures (about 60 I would say) and I realize in the Epilepsy world that probably isn't that many, some kids or adults have a hundred a day. BUT ~ Sara's never stop on their own, she always requires medical intervention. We have had difficulties at school, her behaviours have had her suspended and sent home quite frequently. I have had to advocate for her with many different people. It gets very tiring and is very frustrating, especially when it is another parent of a child in your daughter's class. For ex. My daughter hit another child (or should I say punched, in the stomach) and the parent called the school (rightfully so) and wanted to complain, and went on about the zero tolerance policy and so on. The principal went on to explain to the parent about Sara's "condition" and their was a little more understanding.
Sara struggles socially and does not have a lot of friends, I try to keep her active in the community so she can work on her social skills, she plays indoor soccer and goes swimming at the YMCA, ashe participates in activities at the YMCA as well. She is a great kid with great intentions! She just can at time be overpowering and intimiditating to other children, it doesn't help that she is quite a big girl. 97 lbs and 4'71/2"!!!
This past year in 2009 was probably the worst year for us with Sara, she had a seizure in February that has left her brain damaged. She was paralyzed for a few days on her left side and has been rehabilitating herself since. The damage was caused by lack of oxygen to her brain for 95 minutes (Convulsive Status Epilepticus) while the Doctor at WGH tried to get her seizure to stop. She spent a week in Children's Hospital recovering and we were sent home, a couple of days later Sara was admitted to Children's Hospital again this time because her left arm was continuously raising for a minute and then relaxing, a repetitive cycle that went on for six hours. (Non convulsive status).
We got a lot of help after these seizures with home care being provided by CRC and Respite from CCAC and a social worker from TVCC and PT/OT everyday through TVCC. It has been a whirlwind since February. She has made great progress, but continues to have a BIG seizure every 4-5 weeks.
We saw a new Neurologist at Mac Children's Hospital and they want to do some genetic testing to see if Sara has an Epilepsy Syndrome called "Dravet Syndrome" we are right now waiting for Federal approval for the genetic testing. It sure was a great experience getting a second opinion, the eye opening we got while at Mac was enlightening, and refreshing. I am very excited to think we might finally have some answers.
Having a member of your family have Epilepsy impacts everyone. It has impacted myself in that I have had to advocate and go to various meetings, appointments with specialists and doctors, I have lost jobs, I have even gone back to school, all because of Sara.
My other children have been impacted as well, the little one is very sensitive and doesn't like to be alone, she needs us all the time. The bigger one is affected in his own teenage way as well I am sure.
I am sure I have left things out but I need to get back to my life and stop typing on the computer, if anyone has any questions please feel free to send me a note.
Laura Cunnigham, Mom of Sara