I Don't Know What to Do Anymore - Rome,GA

I don't know what your situation might be, but I can only imagine the worry that must be weighing on you. It sounds like your doctor's office is not very understanding and if you feel like something is wrong, I would demand a second opinion. My family has had some major medical hardships and I have found that the best doctors around are at specialty places in Atlanta, which for us has been Emory. But I know that Children's Healthcare of Atlanta does not deny services to anyone based on income or otherwise, and maybe someplace that is a research facility could offer more answers for you. I hope so!

Dear R.,

There's nothing worse then to feel lost and have a doctor's office make you feel that feeling of being unimportant. Listen you may want to give Children's Health Care of Atlanta a call or Scottish Rite, I'm sure if you need a referral from your doctor's office they will give it I wouldn't want a second opinion from the same doctor's office some doctors do that. If your insurance requires no referral then start looking at those hospitals or call the Shriners Hospital Greenville SC ###-###-#### website is shrinershq.org listen my youngest child was born with erb's palsy I felt alone no information never knew what it was or heard of it. The doctors here said lets get him therapy make a decision about 1 yrs old. When he was almost one his arm was still pretty limp (from delivery nevers in the neck are damaged your arm hangs like a stroke patient) so i thought hey? the Shriners Hospital have some of the best of the best and if you can't pay or your insurance won't pay they will take care of the bill for test surgery etc. so I called got the paper work talked to them, they even had transportation to take us if we couldn't get to their hospital (just for us I never felt so important in my life and that someone else deemed us and our situation important) we made the appt got ready to go 2 weeks before our appt he started moving his arm. I can't express what I felt other then shock and greatfull, we ended up canceling our appt to the Shriners Hospital but he's now almost 4 a few times he's fallen it effected his arm for a week or two but I know that if he has any problems I have them to go to. With my situation I'd start at the erb's palsy clinic they now have at Emory then the Shriners Hospital. I now know I have more then one place to go and I can get all the help I could ever dream of having. Listen take the information and use it or not just sharing what I've had from my experience and to let you know you're not stuck and if you feel something else needs done listen to your gut feeling you live with your situation everyday some doctors do one test and call it done, I say there is a test for almost everything and if i think something is being over looked I keep pushing on there's other doctors...go forward you are your child's best advocate. Best of luck to you.

I don't have any advice really, I just wanted you to know I'm dealing with the same thing. My 18 month old had her first at 10 months and we average one every other month. The docs can't help unless they witness the seizure, which we all know is difficult! If you need to talk, I can relate!

hi R..im W. sorry to hear about your problem,i went thru the same thing when my nephew brandon was 7 months,there is a long story before all this but to get to the point,next time she has an episode take her to the emergency room right away a childrens hospital would be best,they need to see the child jerking with these episodes before they take notice,brandon started with what they call infantile spasms, and now he has to take medication on a daily basis to keep these spasms away which is now called grand mal seizures. that child needs to be seen by a nuerorologist, i take brandon to a doctor holt at egleston he is a spectialist his number is ###-###-#### or ###-###-####. good luck