i would first like to start off saying thank you all for being so comforting to someone new to this "E" stuff.
i just found on the 24th of this month that my son was having seizure activity and was put on the generic of zanotin(spelling). his Dr. called me today(the 27th) to tell me that there arent any neuro's in my area that take his insurance. Gage has medical card through the state because i cant afford to pay for insurance and be able to provide for my kids at the same time. i was told that there is a clinic that meets every other month and if there was no way to get him in in november that he would have to wait until january 2004 to have his first appt. what am i supposed to do. i know nothing about his condition, how severe it is, what i should be doing etc. and they tell me because i have state insurance i have to wait 2 months or more to find out. my only other option would be to send him to pittsburgh for his appt. and that is a 2 hour drive from here.
i am seriously upset to the point that i would do something if i knew it would do any good. what would happen if he had a worse siezure then what he is having, how would they treat it if there is no one that will do it. they pretty much left me hangin on a thread and not knowing what to do. i dont know what to do. i have looked up everything i can on the net. and what scares me is now that i know what to look for i know he has been having them. should i be documenting them? sorry fo another book but i know that there are people here that know what im going thru. thanks for the ear!!!!

------------------

Hi,
I am so very sorry that you are going through the pain of feeling so helpless. I am also sorry that there is nothing I can even suggest for you. I just want you to know how very sad I am for your pain. I will keep you in my thoughts and prayers. Please let us know how everything goes. Kathy

i am so sorry you are going through this i too not to long ago went through this i have state insurance myself and its a pain.i had to have a test done not to long ago and the only dr that did this test didnt take my insurance so i called them and i asked them if there was any possible way to see him anything i could try or do. they said they werent sure so i asked them if the insurance company agreed to pay it would he take it and he said he would i then had to call the insurance company and basiclly beg and plead with them for about a week calling them everyday talking to i think almost every one that would listen to me.finally they gave in and gave the approval to go and see him and have him do this testing you might want to give it a try i have been able to get things that the state insurance doesnt under normal circumstances do because of the condition i have they make an exception i guess i dont know but its alway worth a try i hope you get things figured out for your little one i wish you the best take care jessie

------------------
mother of 3
ages 4,3,and 1
my pride and joy

diagnosed with epilepsy jan. of 97

live life to its fullest you never know when it may be to late to do all the things you would have done tomorrow

I would try calling the neuros and speaking with them. Go to their offices and plead/beg as suggested.

Another approach is to start writing letters. Write letters to the doctors. Write letters to the editors of newspapers in your area.

Go to any "Ladies" political societies and address the issue there. These women are mothers too. And believe me, if motivated, these women can get things done. I have been a member in my area.

In the letters to the editor, I would point out that people are being taxed to help the state provide this medical insurance, and if it can't benefit the people it is supposed to help, what good is it?

thnak you all for the response. i was contemplating on going to the newspaper but didnt know how to begin. i think you all just gave me a few ideas. and your right. the taxes of the people ARE paying for this insurance....including me. i just dont understand why it is a 4 year old needs to wait that long to see someone all because of his insurance. yiou would think they would get him in right away just because he is 4 and a child. oh well but thank you all very much. http://www.healthboards.com/ubb/wave.gif

------------------

Hi Gascas,

I wanted to answer you question about whether you should be documenting Gage's activity. YES!!! Keep a record of the seizures and we add notes about Jake's behavior as well. Like: "12:46 PM, eating lunch, being picky, avoided eye contact; sz ~ 45 - 50 seconds, stiffening only, finished eating and napped for 3 hours".

By being detailed you may be able to identify triggers (things that may make him seize).

This will also provide clues to his dr when you do get in.

I really hate this for both of you. It's bad enough to have to face seizures in your child without having to worry about who will treat and how they will be paid. You will be in my thoughts and prayers.

Love and light

Lisa and kids

thanks lisa. the only thing im having a hard time with is if he is having one or not. like last night he fell asleep on the couch. woke up and was babbling like he was talking in his sleep. was a little shaky but not to bad and his eyes looked like he was ona high, and then did the same thing an hour later when i carried him to bed. but i dont know if he is having one or not becuase i dont know what im looking for. all this stuff he used to do, i have no idea what it is caus eit is all new to me. thanks for the ear though. hope you are all doing ok and having a good night.

[This message has been edited by gagcas (edited 10-28-2003).]

Hi,

Well , you also have to remember that some of what you see may be the medication he is on. IT can take about 6 weeks to adjust to it.


At least he is on meds, 2 months is not too bad to wait to be seen. We waited 3 months, after waiting 1 month for an EEG, and he was not on meds or anything.
We ALWAYS drive about 2 hours to get to a doctor, not much closer to us. WHen we go for the second opinion we will probably travel 4 hours. THere is one closer but insurance will not let us go to that state.

Hang in there. Read all that you can. A good book is "Mommy, I have a starring problem."

You said you think he has absence seizures, right? epilepsy foundation of america's answerplace has a lot of good info, so does epilepsy ontario...

Good luck...Hang in there while you wait...