epilepsy update

Sophia with our little cone head dog(his itching problem has been an issue lately-thus the cone), Papi. Sophi still loves him though!


My blog last week about Peace in Disruptions, one of our ongoing disruptions is Sophia's struggle with epilepsy. Here is a brief update as we continue to raise the medicaion dosage, she is responding really really well. I am thankful for these sunny days.

Sophia has continued to go to the neurologist regularly. We have been on an incline on the dosage with the new medication since we started it. She responds well to this medication. She doesn't have mood swings from it, she doesn't get dizzy, depressed, she seems to be doing great with the medication itself. Nothing has made me more sad than having a two year old tell me, "I want to lay in my bed all day and be alone" it was that moment that I realized how severe these medications can alter these children's personalities. My big mouth social butterfly of a daughter, wanting to be alone all day? Something had to change, three medications and two doctors later, this new medicine is much better for her. I feel like on this medicine I KNOW her. The dosage has been increased from the original 10mgs a day to 35mgs now we are increasing the amount every two weeks until she is on 75mg per day.

She was having stomach aches which the neurologist thinks is probably her 'Aura' that she is having or going to have a seizure. As she gets older and is able to explain the feeling we will know more. A stomach ache, could really be a feeling completely different, she just doesn't have the words to explain what. Sometimes with a seizure in the brain the physical response is no more than a 'strange sensation'. The physical responses to the seizures are limited. Sometimes I notice a slight droop on her right eye, she will get disoriented. It usually doesn't last long and it isn't often, afew times a month maybe. When it happens I usually notice it for a few days. It's like once it starts then it lasts a few days then passes... Almost like a build up of electrical activity on her brain, then the storm, then we have sunny days. This is just something we have gotten very used to dealing with and I don't think Sophi really knows any different, which that makes me sad but is a blessing at the same time. As we increase the dosage she tells me her stomach hurts less and less.. she doesn't complain of headaches near as much..

I heard CURE, citizens united for research in epilepsy, refer to seizures in saying people think lightening doesn't strike the same place twice, but for people with epilepsy it can.



We are reminded how blessed we are to have her. Every picture she draws and every crazy thing she says is a wonderful gift! She cried to me one night, she was having a headache, we laid in her bed. She said, "I don't know why I have to have all these tests but I still feel bad, when am I going to feel better?" It was all I could do not to cry with her but I held her and told her she would feel better soon.

Luckily God blesses me with a peace to remember how lucky we are but I can't forget that this is very real.

As we have been upping the medication I already notice a huge difference. She doesn't complain about stomach aches near as much. She doesn't get that quiet feeling where she just wants to go lay down, sometimes she would say she had a headache. I am thankful that for now things seem to be under control.

I have been trying to limit the TV watching as the doctor has said only one hour a day. I think that is good for all kids but very hard when they have been sick and this cold weather we can't go out to play as much. She is sleeping good. Not taking many naps but most nights she goes to bed at 8 and gets up around 730, the doctor said those long sleep periods are good for her. Limiting her sugar is an issue as this girl is a chocolate addict! But she is a kid and we let her have fun! Just don't go crazy and remain in a healthy limit.

We have got a great group of people who take care of her. A supportive pediatrician, who is there whenever we need him. A caring neurologist, a kind receptionist who works in the office, the same EEG tech does all her of EEGs; the consistency of that makes those tests so much more bearable. The nurses in the office are always so polite to her, they talk to her and it means the world when they ask her how her day was. Even the pharmacist who fills her prescriptions, Sophia adores him, he always comes from around the counter to greet her and ask her how she is feeling. I have sat in his office looking up appropriate mediation dosage and side affects, he is our 'pill shop angel' as Sophia calls him. Her PreK teacher is so understanding, talks to her about things, and helps me watch for side effects, giving me a daily update on how she is doing.. these people have NO idea how much more bearable they make this situation.

So in this chaos we accept it, we say, "I am God's servant, May it be to me as you have said" because "with God nothing is impossible."