I Saw The Latest One

LittleDudesMom

Well-Known Member
Susie, I'm so sorry - how awful it it must be to watch your child so frightened, not knowing what she is experiencing - while you stand helplessly because you can't get a doctor to respond. One of the responses on this thread suggested that you film her episodes. I think that's a great idea.

It seems like the seizures are coming at a faster pace. I hope some of the referrals you have gotten from other members pan out for Jess. Hugs to you both.

Sharon
 

susiestar

Roll With It
I spoke to the nurse at the neuro's office. She made a big deal out of promising to talk to him and call us back before 5. Said it would be the afternoon because he wasn't in until 1 but she would call by 5. Never heard from her. Good thing is that it is a new nurse and she actually answered the phone. The other one never did. They have an awesome receptionist who was really frustrated with the old nurse because she literally refused to answer the phone. WOuld only handle messages on the machine, not talking to parents when they called. So we are hoping to hear from them today.

Also managed to get an appointment for Thurs with the primary care doctor. They are swamped right now and said the neuro should deal with this cause it sounds neuro to them. Nurse at neuro said it didn't sound like a seizure to her, but she said that if the child is aware then it cannot be a seizure and if she doesn't fall down or lose muscle tone then it isn't a seizure. She REALLY needs to read the descriptions of the different types of seizures at the various epilepsy websites, cause this just isn't true.

Anyway, that is where we are at. Had another one last night, about 45 min. I do worry about the length of these. Heck, I worry about all of these, who am I kidding.

Y'all are awesome. Thank you.
 
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