How does it feel to be the parent of your child?
My daughter Madeline is 7, and has been diagnosed with Epilepsy - grand mal seizures.
For those of you unfamiliar to this condition, let me elaborate. Epilepsy is a medical condition that produces seizures affecting a variety of mental and physical functions. It’s also called a seizure disorder. When a person has two or more unprovoked seizures, they are considered to have epilepsy. Seizures happen when the electrical system of the brain malfunctions. Instead of discharging electrical energy in a controlled manner, the brain cells keep firing. The result may be a surge of energy through the brain, causing unconsciousness and contractions of the muscles.
I feel so helpless, I cannot make it stop, and all I can do is wait for it to end. As her mother all I want to do is protect her and make sure she is happy. But I cannot control this, thankfully the medication provided by the doctor has cut the amount of seizures she has a week tremendously. But she is still averaging three seizures a week.
My heart breaks every time the teacher calls to let us know she had a seizure in class or at school. I know she just wants to be "normal" and she gets so embarrassed and upset when she seizes and school. I used to come pick her up, but with her averaging three a week, with at least one of those at school I cannot take her out. I just want to protect her but I can't and it kills me. I go to my own mothers support group to help me deal with the feelings of inadequacy I experience. As a mother I should protect my baby, but I can't protect her from this, I can not kiss and make it better.
How is your child developmentally the same or different from other children at the various ages?
Thankfully, this has not affected her academically and her teacher is very understanding and has taken the time to learn and practice what to do hen Maddie has a seizure in class, which is an amazing blessing. Unfortunately, a few of her classmates tease her and a few other are scared of her. She is so embarrassed when she has seizures at school and it breaks my heart every time I get the call letting me know what happened and how she is doing. Occasionally she has bumps and bruises from her falls during her seizures, but I can see that the physical is not affecting her as much as her classmates. Thankfully her teacher and the school have allowed me to come into the school and give a short presentation about Epilepsy. I pray that this will help.
What financial burden, if any, are you experiencing?
Financially, we have been okay; we have good medical insurance which covered us for the tests while she was being diagnosed and Maddie's medicine is about $50/month so that is are only reoccurring cost, so far. Although my husband has taken to spoiling her since she is dealing with so much for such a young girl, so that has impacted our wallets a bit.
What professionals/agencies do you deal with? What services are available to you and your child? How did you find out about the above services?
When the doctor told us, he gave a lot of information and resources. But I went online to research for my own, because I felt a pamphlet about my daughter’s condition was not enough. I found the epilepsy foundation which had a lot of good information and has affiliate locations around the country that help those dealing with this condition, they offer help for a lot of things, one of which is advocating for families and children who feel they are being treated unfairly in some way by some organization, for example schools. But out closest one is in Los Angeles, and Maddie's school has been very accommodating and understanding, now just to hopefully educate the students a bit. But the site was/is helpful and lead me to epilepsy.com which I found chat rooms where I can talk with other mothers about their children and struggles which although not solving my daughters condition gives me a place where I feel understood and I can vent or ask questions and I know people can understand my fear and pain.
What other information do you want to share?
My daughter is so bright and full of love and laughter. I wish children saw past that and would not tease her. I am so afraid they will squash her amazing spirit. But hopefully my presentation about epilepsy will help, along with this new diet I am researching and hoping may help. It is high fat, low carbs and for some people has stopped their seizures altogether, although they still suffer from the condition. But as a mom I will always be looking for some cure or medicine to help my little girl. She is the light of my life.
*below is the link to my glogster which has a picture of Maddie and I, along with an informative video and some first aid tips and helpful reminders for teachers.
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