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
Hi Karen
Welcome!
I'm so sorry to hear about Anna's birthday party. That's just lousy. It hurt MY heart to read it.
I'm amazed that her dad believes there's nothing wrong with her. Just goes to show you the power of denial, eh?
I'm a scarred veteran of battling our insurance company, so I might have a few pointers for you:
Hang in there and keep us posted.
Thanks
I do appreciate your encouragement and the tips for the insurance company battle. Yes, we do have mental health benefits and I'm definitely NOT going to take NO for an answer. It's just a shame that insurance companies are more in charge of our health and well being than the doctors are. I'll keep things updated as they progress. Thanks for the welcome too. :)
Karen
Welcome Karen and Anna!
Hi Karen,
Thank you so much for telling us your story and bit about Anna. I think you will find that many parents here know exactly what you are going through and I know if we share our information, there is always that little tidbit of information out there that can help someone else. The birthday thing also got me thinking - how sad. Adam was never invited to a birthday party - ever. One day when his sister was heading out the door to a party he asked me "How come I never get invited to a birthday party". It is like a stab in the heart. That is why I put this site together. The doctors are just not willing to share all the goods and it is up to us to find the information.
I love your attitude - you sound like a great mom and Anna is lucky to have you to go to battle for her. I look forward to hearing more from you hearing your progress. There is lots of good information in the forum so take the time to browse the categories and chats.
Arlene Martell (Mom of Adam above)
Publisher, EpilepsyMoms.com
Thanks :)
I so appreciate the positive comments. I know I'm not alone out there, but sometimes it's hard when there's no one else around that can relate.
Tomorrow is her sleep deprived EEG. Then comes the insurance battle. Thanks Arlene for your encouragement. I'm a pretty strong person considering all I've been through the last few years (another story, another day) but sometimes it's really comforting to have someone say something nice...for a change.
Karen
Welcome from me, too!
Hi Karen --
Today's Anna's sleep-deprived EEG, right? Let us know what it shows, please...
I've been thinking about your comment that it's comforting to have someone say something nice for a change. I'm sure that when I walk in the door of Sarah's school, they cringe.
I'm sure that the LAST thing they're thiinking about me is something
nice! (They're probably thinking all kinds of other things, tho...) I
hope I live long enough that there comes a time when I don't have to
badger our insurance company for every single thing Sarah needs.
You know, sometimes I really hate not being able to be nicer. I'm basically the kind of person who would like everyone to like me. (Unless you don't treat Sarah well, then watch out!!)
But welcome to the place where we get that being nice is less important than getting what our kids need. You sound like a strong person (and I'm curious about the rest of the story, too!), and I'm glad to know you!
Annie
Thanks...and the results are....
not going to be available until June 2, which is when we're scheduled to see the neurologist. Bleh. The radiologist wouldn't even let anyone stay with her. *sigh* I'm so protective of Anna but she was ok and wasn't back there more than 45 minutes. Anywho, I'm on nail bite alert here...I tend to chew them down to the bone if someone doesn't stop me. *big grin*
Being a teacher of special needs kids was one thing....being the parent has put it in a different perspective. I am in the place now that I never thought I would be...at the other end of the table in SPED meetings. I'm finding out how it feels to be the parent and I'll tell ya, it's not always a good place to be. I guess I'm saying that I know how some of my parents have felt throughout the years. Not to say I wasn't understanding or sympathetic...my compassion was and still is there. I guess I'm seeing it through their eyes...the eyes of a parent of a special needs child.
I did badger the insurance company...and Children's Healthcare of Atlanta....and the neuropsychologist's office. Everyone of course was blaming the other and assuring me that there was no way I could have known this or that. Well duh! I'm still waiting on the outcome of their "investigations" since Anna has to have a 6.5 hour testing with this neuropsychologist on June 5. *rolls eyes* Seems to me that all these professionals need to get their act together? I would hate to go all Towanda on them. *big grin*
Annie, I have to agree with your comment about teachers cringing. I know some who do, I work with them. Not necessarily at me (although Anna's teacher last year...she was, well...nothing nice to say) but I've seen and heard comments and saw the looks about "that parent". Now that I'm the parent, I fully understand WHY some parents are like bulldozers when it comes to their children. Yet, on the other hand I've seen parents who don't give one red cent about their child. That's the sad cases. I've worked so hard NOT to be one of those teachers who cringe or secretly roll my eyes when I see a parent walk in. I've also gotten a richer understanding of what it must be like to be the parent now that I *am* a parent of a SPED child. I believe it has definitely changed who I am as a person and has helped change my outlook on education. I am also VERY protective of Anna and believe me...I can be quite ferocious when it comes to my sweet girl!
As for the rest of the story...lol...it's a long story about abuse, mental and sometimes physical at the hands of a control freak (and how I got my freedom), of how I have had to fight just to get him to accept her diagnosis and get him see how vital it is to make sure Anna gets her meds. He refuses to believe she has epilepsy, refuses to believe that she has anything wrong with her...even when three doctors and several school professionals have said the SAME THING. *big sigh* I guess that medical and education degree he found in the Cracker Jack box trumps everyone else's eh?
I'm grateful for the welcome too!