I just joined today. I'm on a Facebook group for parents of children with epilepsy and someone recommended this site. I'm all for finding as much support as I can...there's NONE here where I live. My daughter is 9 and we've been dealing with this for just over a year. I've experienced a bit of hesitance where Anna is concerned...and it stung. She can't help this and it's not fair to her. *sigh* Oh well...their loss I say. The sad thing is...I can say that...it's not so easy for her. Case in point: no one...not one child...came to her birthday party last weekend.
Anna has learning disabilities. expressive/receptive language disorder, and Mitral Regurgitation in addition to epilepsy. She currently has IEP's for both the speech and LD. What a plateful for such a small girl! We deal with it as best we can, with our limited knowledge. One thing is certain...we are learning. The "we" I refer to is myself and my new husband. Anna's biological dad (to whom I was married) doesn't believe there's anything wrong with her at all and tends to fight me on her treatments. *BIG SIGH* I refuse to back down and I personally do NOT believe there is a court in this nation that would argue with three neurologists, a neuropsychologist, and test results.
Anna takes Trileptal, 450mg 2x a day. We are going tomorrow for another sleep deprived EEG and then I have to battle the bloody insurance company to pay for her neuropsychologist's visit and the scheduled testing she's due to have next week. Geez...insurance companies do love to play with our lives and the lives of our children.
It is my hope that not only will I learn something from being here, but will at some point be able to help others along the way. As a teacher myself, I never stop learning but I also enjoy helping.
Karen Pothier, Demorest GA
A Big Welcome!
Hi Karen!
And welcome to the forum. Like you, we are all moms (and dads) looking to share a little knowledge and learn a thing or two along the way. ;-)
I'm so sorry to hear about Anna. My heart breaks that she did not have any guests on her birthday. When people are not familiar with epilepsy and seizures, it is hard for them to adjust and accept. With my son Adam, he had some great friends that stood by his side and he had others that simply stopped bothering with him. I think a lot of it has to do with how children are raised. I like to think that I have raised by boys to accept everyone - no matter their differences or disabilities. The journey with Adam has given us greater insight into how precious life really is and how important it is to treat others with respect and dignity. Don't let this beat you down. It's just one moment in time.
You'll find a lot of support here. I'd also recommend looking into a local support group for parents. This is a great way to meet others sharing similar experiences, who will be there when you need them and allow Anna to have social opportunities. For those not willing to embrace her, it is their loss. But there are better people in this world and better friends for Anna. I truly believe that.
Insurance companies... sheesh. They sure do like to kick us when we are down. Fight for all its worth. Keep calling them. Ask to speak to someone higher up and someone higher up than that... You have nothing to lose. If you feel at any point that you are being treated unfairly, there are state laws to protect you. Don't be afraid to look into them.
So glad to hear that Anna is going for a sleep EEG. These are typically very revealing. Please let us know how it goes.
Crystal