I called

[PurpleAngel]

the Dr. today (again) They apparently are busy and miss phone messages. I talked to the nurse who said basically that they do not do ambulatory EEG's very much as a video (in patient) one is so much more accurate. (?) I find that hard to believe considering being confined to a hospital bed is so very different than being in your normal enviroment.

I explained that I am very curious as to what is happening during the 8 hours that she isn't with me. I get that the teacher can't watch her all the time. I actually doubt that the teacher even knows what to look for. I did provide her with books and info, but she has admitted that she is clueless.

Today report cards come home and I am certain she will get "basic" grades in somethings since I am 99% sure she is missing out on instructions. She has come home with homework, and can't remember what she is supposed to do so we wing it.

So...I am done rambling. Will sit here and wait for the Dr. to call. :mrt: He doesn't pertain to anything here at the moment, but he looked like he was bored

 

[RobinN]

I think this is what I would do...
If you have some time during the day. It might mean you need to take some vacation days if you work during school hours, or make an arrangement with your place of business. Offer to volunteer in the classroom. Grade papers, arrange art supplies, file.. whatever would help the teacher, and keep your eyes on your daughter when she isn't looking. It won't happen the first day (but then it might), expecially if it is a novelty that you are in the classroom. But after a couple of days she will be less distracted and it will seem normal that you are there. If you have any skills perhaps you could offer to teach a lesson or read a book to the class. If your daughter asks why you are looking at her all the time, just tell her how much you love her. She doesn't need to know that you are watching for something odd to happen. You want to help the teacher. It is very common in our district, so I would assume your teacher would appreciate the extra hands.

Well that is my two cents on what I would do. It always gave me an idea of how my child fit into the dynamics of the classroom. You must go without any preconceived ideas of what you will find, and keep notes.

Also remember that grades don't tell you the special gifts that your child might possess. Keep that in perspective too. My older son came home with grades that were mediocre, he never walked the line, and yet he use to score off the charts in testing. Made life rough for him for many years. Find her strengths and help her get through the difficult times.

 

[PurpleAngel]

Thanks for the suggestion. I had volunteered in her class room last year, and she was okay with it. My main things was to see what my kid was doing, but the teacher had me helping her with math groups, which I didn't mind although it took away from the reason I was there.

So I went last Friday and Yesterday. Both times Kater was okay, until the teacher called on her to answer a question. She went to the board, wrote her answer and sat down. When the teacher asked her to explain her answer she started crying, looked at me and asked if I would explain it. That past, and then she started getting whiny (is that a word?) and really shy.

At conferences I was told that she is doing "Okay" The teacher is concerned that she is having trouble writing. She pushes very hard on her pencil, and will get the first and last letter correct, but mixes up the middle. Example She is told to write "I have to clean the couch off." She will write "I hvae to claen the coouch off."
And she is a bit obsessive. Her pencils have to be lined up short to long, crayons by the shade, and her papers have to be perfectly squared.

 

[brain]

the Dr. today (again) They apparently are busy and miss phone messages. I talked to the nurse who said basically that they do not do ambulatory EEG's very much as a video (in patient) one is so much more accurate. (?)

Actually, sometimes a vEEG can cover more bases
than a aEEG ~ I've had them both. And they get
MORE INFO from the hospital stay than the aEEG;
especially when they have Hospital Staff there to
monitor you. And while every Hospital differs, you're
not typically "confined" to bed. You're on cables -
usually from 10-17 feet long.

(Think of like being a Dog chained to a Doghouse,
:lol

I was able to roam around, do exercise, sit on the
window ledge (well at least at my Hospital it also
served as a bench for guests) to eat breakfast
and read the newspaper and watch all those
construction (ever-growing Hospital) and workers,
watch my EEG monitor, so it wasn't always a dull
moment.

The thing is, the Doctor has control in a safe
environment:

1) can titrate you off quickly to provoke
seizures and you can be in a safe and well
protected place monitored at all times.
(Something you can't do on an aEEG)

2) if that doesn't work, there's other options
and avenues to induce seizures - like sleep
deprivations, or things that provokes seizures;
all while you're in a safe place. (Another reason
why you can't do that under an aEEG)

3) if you do have a seizure or seizures, they
(the Staff) will know what it is, the monitor
will trip the alarm even if you're not able to
push the button; the XLEvent will record it:
And they will then review it all and document
it on the spot: and then go to you in person
and log everything - what's happening, etc.
These are trained personnel and they know
what they're looking for just by seeing your
EEG. (Another reason what a vEEG can do
than an aEEG cannot accomplish)


There's more to add ... but maybe this alone
will paint a total different picture on the canvas
for you. I've had 3 or 4 aEEG's in my life, but tons
of vEEG's and in-Hospital EEG's - both STM and
LTM (Short Term Monitoring and Long Term Moni-
toring). With this going on 24 hours a day, non-
stop; I usually am in there 3-4 days tops on the
average, but I've been there as long as 2 weeks
a couple of times.

By having a vEEG - this gives the Neuro or Epi
the whole perspective and viewpoint of where
the seizures are originating from and when they
are happening the most - as they look for the
"common grounds" and the frequencies. You
may be having them far more often in the middle
of your deep sleep - totally unaware, for example.

In addition - being this a bonus, will also tell the
Doctor that's treating you, in getting you on the
RIGHT medications -OR- if surgery or something
else is needed to be done or looked through, or
even the possibilities of another medication needed
to be added or the medication needed to be
reduced; a lot of things to look into.

I know I posted a lot - but that's just a little
"anthill" post of Mount Everest of Neurology's
vEEG. vEEG is becoming more advanced and
the computerized system is becoming more
accurate (I did not state it was 100% accurate)
but it's becoming more benefiting to everyone.

While true before people used to have to stay
for weeks at a time; not anymore - thanks to
computers and advanced technologies that's
progressing so quickly.

I have a very strong feeling aEEG's are going to
become a "thing of the past" or not going to be
used as much as they once were long ago.