No problems. Just a 'hello'...

iVillage Member
Registered: 08-04-2001
No problems. Just a 'hello'...
3
Thu, 04-22-2004 - 7:02pm
Married, two daughters, critters, full time work, part time job, and going insane. Desperately trying to leave the full time job (come on, fire me... PLEEEASE!)

My younger daughter is 16. It is funny how people think there are 'cures' for just about everything... yet there aren't even NAMES (diagnoses) for everything! One of the disabling conditions my daughter has had since birth is a diagnosis which most people use to mean "headache". Yep, I am referring to migraines. For my daughter, they are more disabling than all her other diagnoses... and they DON'T have to even include head PAIN. That's another misconception held by the 'general public'.

The latest thing we are dealing with is a sleep disorder which causes her to miss months of school each year when totalled up. It is like narcolepsy but isn't quite...

For high school, she is going to a small non-profit private school for bright kids with special educational needs. She is going to go to college... but after missing 50 days of school so far this year, we are not sure how that is going to work out. She has a wonderful, sensitive, service dog that is a great help to ME as well as to her, because the dog takes care of her and alerts me when she is having difficulty.

-Naomi


www. It's Not Mental .com


iVillage Member
Registered: 03-19-2003
Thu, 04-22-2004 - 8:10pm

Naomi, I'm so glad you dropped back in and shared your story!

 


 



iVillage Member
Registered: 08-04-2001
Fri, 04-23-2004 - 12:35pm
"IEP" is simple - Double time for anything requiring writing/typing or pencil & paper. That should hold true in college, but we are very concerned that on any given day she may not be functional, so what will happen with missed classes, exams, etc?

Yes, she has meds that help the migraines. Antiseizure medication cut them down from 1-3 days long, up to 4 times per week, to just 1 day long, about 1-2 times per week. Then the addition of an acute migraine med (3rd one tried was the charm), That has further cut it back to about 1 missed day per week.

But then she ALSO has a sleep disorder... similar to narcolepsy but isn't... no "label" for it ... that has caused her to miss a lot MORE school! She is just now starting a trial period with a medication for Narcolepsy, and we'll see how that goes. She's scheduled to see an endocrinologist in another state about it this summer... We'll be flying there and back, and having to stay there about a week. NOT looking forward to it... but HOPING that we'll get some answers and maybe some help for her!

-Naomi


www. It's Not Mental .com


iVillage Member
Registered: 03-19-2003
Fri, 04-23-2004 - 2:08pm

Well, I wish you loads of luck with the specialist.