Getting Medical For Ya-

Because I have been asked... a little about Sophia's seizure disorder.
Epilepsy is a wide term basically meaning this person has multiple seizures. There are different types of seizures and different types of disorders- we deal with a number of different types of seizures.
When Sophia was about 9 months old she was "making funny faces" as I called it. The left size of her face would pull to the side; she was teething and I thought she was making strange faces from the pain of the teething. I noticed it off and on for 2 or 3 days then my mom who is an RN was over and Sophia started doing it again (I thought she was doing it, she was controlling it, but she wasn't). I told my mom to watch. I remember seeing her face- she looked so upset and told me to call the doctor that it didn't look normal. She didn't want to tell me that she thought it was a seizure. The pediatrician asked me to explain it to him over the phone, I did.. he said, I'll never forget "I don't want to alarm you, but you need to take her to the ER it sounds like she is having a focal seizure." (for info on focal seizures - http://www.nlm.nih.gov/medlineplus/ency/article/000697.htm) We took her to the hospital and we were admitted for 3 days. They did an EEG and some other tests. It never happened while we were in the hospital and the EEG was normal (they often are unless the child has a seizure while hooked to the machine). We were released with no real explanation for what was happening. We didn't go much further at that point, I think we just thought it would go away- we thought that for a long time.
Then soon after she started having febrile seizures (for info on febrile seizures http://www.nlm.nih.gov/medlineplus/ency/article/000980.htm). Any time she ran a fever she would have a seizure. Sometimes it was her whole body and sometimes it would be an arm or one side of her body. They normally would last anywhere from 1 to 6 minutes. The first time she had one- she had woke during the night with a fever and I put her in our bed. Tony went and slept in the guest room and I stayed in the bed with Sophi. I woke up with her next to me; her body was shaking and she was making a noise like she was choking (my sister had a febrile seizure when she was a toddler so I knew what it was- but was terrified) I carried her into the living room and I was yelling for Tony to wake up and call 911, I told him she was having a febrile seizure. I knew from life guarding what to do, but had never experienced it- I put her on her side and spoke calming to her. I thought when it was over that she would just "wake up" - She was limp her face was gray her eyes were open and fixated to the right and she wasn't responding to our voices. We thought she was brain dead; we were later told that it is called "postictal state" (basically the brain trying to rest after the seizure and reboot itself). We were taken to the ER and they said she had an ear infection and but her on antibiotics and sent us home. They gave us a handout about febrile seizures. Febrile seizures aren't that rare in toddlers and they are normally harmless. Tony's younger brother had a febrile seizure episode, my sister had, and Tony's uncle.. we just thought it was something that ran in the family, looked really scary.. but it was a one time thing. She has had numerous febrile seizures. After about the third febrile seizure I switched pediatricians because I thought this was something that was a one time deal.. but she could run a fever from immunizations or teething or illness and she was having seizures. Almost any time she had a fever she would have a seizure. The new doctor refeered us to Arnold Palmer Children's Hospital and they got us in contact with a nuerologist who has been a blessing to our family. She sent us from MRIs, EEGs, head CT, different tests. They gave us a medication called Diastat that we give when she has a febrile seizure lasting longer than 3-4 minutes. They eventually started her on Trileptal, and since her seizures have continued she takes Clonazapam when she is running a fever. Since going to the nuerolgist she had started having absence seizures (http://www.epilepsy.com/epilepsy/epilepsy_childhoodabsence); she'll just stare off from time to time with no explanation. She doesn't seem to notice it has happens. Sometimes she will contort her right hand, it's like something grabs her and then it just lets go and she continues doing whatever it was she was doing. She has had a sleep seizure (but the doctor thinks it was a one time thing due to stress from traveling, unless she has more they aren't as concerned with this). She was sleeping and woke up (we thought she was awake) screaming, she was unconsolable, she said we were hurting her when we held her, but she didn't want to be put down, she wanted to listen to her music, but it hurt her ears, she said her mouth hurt, her tummy hurt.. it was horrible, I felt like I couldn't help her. I didn't know if she was awake or asleep. Tony was trying to help but we couldn't do anything to make her feel better. Three and a half hours later- almost as quick as it started, it stopped, and she went back to sleep. She was tired that day and cranky but she was fine and she didn't remember any of it.
It is so complex... many different ideas on epilepsy, many different thoughts, but that's a look into what it's like with her.
After a febrile seizure, or any more intense seizures...she may go through a day or two were she is off balance, she might be clumbsy and forgetful, but it doesn't last more than a day or two. Sometimes her left eye is droopy but it always corrects itself. She has been through alot but we are very lucky that she is a normal, active, happy child.
Sophia is never quiet! She has an excellent vocabulary, she has developed normally, and she has no long term damage from the seizures. The most important thing I like to hold on to is that there is the hope that she can grow out of this! I can't let go of that. Typing all that info made me kind of sad- I am glad to share with you though... I am glad people care to know and it gives some insight into what she has been through. God has protected her and I know He will continue to place a hedge of protection over her. Thank Him for that!
The next blog to come will be about Troy. He is a special boy who is a blessing to our family. I have been working on a blog about him and the joy he has brought our family. So much attention is given to Sophia and I really want to honor her brother who really is the "little rock" of our family. He brings us so much joy and he always knows how to make his siter laugh. Sweet Troy!