Quote:
Originally Posted by scooter62487
I'm trying to get my son to see a neurologist and his dr has ordered it per the er's request but the referal part of the doctors office isnt doing their job ive been fighting with them to get it done since jan. 2011.
Cause its so genetic in me and my family that any kids i have stand a 95% chance that they will be born with it.
My step kids are one boy and one girl and when they saw their brother have a seizure they finally understood why i am so careful what their brother is around. I thought they understood but the next day I caught them pretending they were having seizures because they thought it was fun. So then we had to explain it to them again. I won't give up I'm trying very hard. I just feel exasperated at times and could use advice when it comes to kids.
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((Scooter))
I am sorry to hear that you carry the gene. Are you living somewhat near a university in Florida? Many universities are doing studies on genetic epilepsy (paid studies) ~ check out
http://www.mayoclinic.com/epilepsy
I know that Mayo's has one going now, in which they pay for transportation, time and stress that may be a factor.
My E isn't genetic, but was caused by a high fever for an extended period as a toddler. Otherwise I'd seriously consider joining the study! IMO, helping scientists understand E ~ how it works, what treatment is and isn't helpful under various circumstances is invaluable. It could be a great opportunity in helping the E community, if you're interested and have the time.
I just had to throw in my personal opinion there, sorry.
Anyway, I'd advise you to continue to change your step-daughters' attitude towards E. The better they understand it, the less likely they are to make fun of it. For me, it would be very hard not to be hurt by them "pretending seizures". That is not funny. At all! Maybe they need to be more personally involved somehow to gain their support and sympathy.
Have you tried contacting the local Epilepsy Foundation? Perhaps someone could go to the nearby schools for a presentation. We (those of us with E) know how many people in this world are impacted by E. So many different types of seizures, varieties of treatments out there.. If we could just remove that stigma.
You are in my thoughts Scooter. Not easy circumstances to find yourself in. Just keep pushing through honey ~ get help from wherever you can get it. Try to be very consistant with childrearing. You may have noticed a bad pattern, but that doesn't mean that it's too late to change. It isn't too late! It may take longer to get past the hurtful pattern, just stick with the healhty changes & it will change.
I'd also recommend that your hub tries to connect more intimately with his daughters about their behavior. He could simply tell them that their teasing is a big NO. It hurts you ~ which hurts him. Plain and simple. Please don't do that anymore. How about spending a little "alone time" together at each visit. That might help relieve the problem...perhaps the girls are feeling that they need more attention ~ and bad behavior does bring attention. Better than no attention at all. Perhaps that's their current perspective??
A few things to think about anyway... best wishes!