Why does no one get it?

[CJR]

Thanks all! Your thoughts and prayers are always appreciated.

Because of the great feedback I got here I asked her Neurologist about the clothes picking, aimless wandering. I'm waiting for them to get back to me. Having a sounding board like the great folks here at CWE helps me to be more specific and on target when I talk to the neurologist.

Self-Education is key!

[RobinN]

You will have to be careful as to what the school will allow and what they won't. If the aimless wandering and unusual behavior is something that would require someone to be with her all the time, she might need an aide (shadow). This can be a stigma over time for her, and yet her safety is important. One just can't expect a teacher to watch 30 kids and keep track of another in and out of seizures during the day, and teach.

[CJR]

One just can't expect a teacher to watch 30 kids and keep track of another in and out of seizures during the day, and teach.

This is what I'm afraid of. Until yesterday I wasn't aware of aimless wanderings so it's "new" news to me and to the Neurologist. And apparently it wasn't welcome news because they called me back at 12:45 and asked, "How quickly can you get her in here for lab work?" I said, "If you need her in there then it's going to be 3:00 before I can get there. If you need her to go to the nearest lab then it will be 1/2 hour." This reminded the nurse that I live nearly an hour and a half away. So they allowed her to go to the nearest lab and get the bloodwork done. It's only been 9 days since the last blood work. But they also called in a prescription for Levocarnitine (Carnitor). They said her levels were borderline during the last bloodwork but because of the frequency of the seizures that we should get her started ASAP.

I am now frantically researching yet another new med. It's a good thing that it's Friday because I just might need a drink!

[RobinN]

Does she lack carnitine?

Other medical problems—The presence of other medical problems may affect the use of levocarnitine. Make sure you tell your doctor if you have any other medical problems, especially:

* Seizures—occur more often and are more severe in patients with a history of seizure activity

[CJR]

They say her carnitine levels were low last time and that they were going to wait until the next level check before starting her on the meds but with her having sooo many seizures they thought it best not to wait. I guess.

[nana1]

I am 53 years old and have had epilepsy since i have been 2 years

old. They have tryed me on many different compo of meds, and i am still not

under controll as of this day. Some people do not understand a pill is not

always going to be the answer. You may never get under controll like i am

not under control, and i can not have any surgery either. If you can get a

person under full controll in a couple of months tell me how you do that!!!!

I am in a choir, in church and in the town. I love music, i listen to it all the

time. I sing very highg notes, i just now i can`t push it to much, got to

watch how much music i do as at times i can find myself winded if i don`t

watch out., but i do love music, please don`t make her give up music it

something she loves, just have her cut back. This epilepsy takes things away

from us so don`t take music away from her, (unless she is passing out on

floor) just have her go to something that will be easy for her breathing.



nancy

[CJR]

please don`t make her give up music it

something she loves, just have her cut back. This epilepsy takes things away

from us so don`t take music away from her,

Nancy~
I promise to do EVERYTHING in my power to prevent music from becoming an Epilepsy Casualty.

We (our family) have a love for music that many don't understand or comprehend. My talented hubby plays: Guitar, Banjo, Mandolin, Fiddle, and Bagpipes. He also sings wonderfully. Many years ago he was offered an opprotunity to be a studio musician by Ralph Stanley's (one of bluegrass's founding fathers) manager. Unfortunately, his mother was just diagnosed with lung cancer and hubby made family his first priority. Since they he has had several other offers but his priorities haven't changed.

So believe me when I say Music is like air in our home...You just can't live without it. That's why I tend to believe that IF she is having a music based reaction it must stem from the breathing part of it because if she was having a reaction to the tone or frequency of a certain pitch we would've seen signs of that here at home. I also believe that the stress of the crowded classroom, other kids goofing off, an upset teacher, etc. could be playing a major role.

No, I won't let her give up on Music. Not unless she suddenly loses the "love" of music. And I don't see that happening!

[nana1]

Wow your husband sounds very talented. Sorry he gave it up. I understand it was family first but i am sure he misses his music./ Wish i could play all those!!! But as long as i have my music and my songs that have a meaning to them, i am ok. I hope your daughter grows up LOVING music like her family does. Just try to keep your daughter happy and healthy, as much as you can. Life will deced what going to come next. All you can do is help with life now and just keep watching her.
nancy

[brain]

I had been marching when I was young;
and had been in marching band when I
was in Junior & Senior High - plus was in
the Concert band in Senior High as well.
I play multiple instruments: Woodwinds,
Brass, Strings, Percussion, and including
Exotic. (This was when I was very mildly
hard of hearing). So there's no reason
why she would have to give it up; not at
all. I am wondering if she would get a kick
out of playing in the percussion? Such as
xylophone? It's really a lot of fun. The big
units are reserved for concerts, the smaller
ones can be worn for marching - and there's
always a need for such players like those;
which are becoming scarce.

But in addition to all of those, I also handled
batons, flags, swords, knifes, torches (lit),
axes, rifles, and other dramatic attention
getters. It isn't easy, it looks easy - but it
takes a lot of practice; and if you're superiorly
good; you can often end up having your own
"Solo" spot on the field during Competition
Shows! (They're there on purpose to distract
the Judges actually, with hopes that they won't
notice the band's flaws or short comings that
would be graded against them)

I know today they have rules and regulations
where a lot that I've performed isn't allowed
anymore for 'safety reasons'.

But why stop there? Explore the avenues of
other instruments! French horn, Coronet (those
are easier to play than a Trumpet - take my
word on that and besides the valves lasts
better) Played the Flute & Piccolo as well as
Bb and Eb Clarinets and I don't notice any
difference in the breathing, but then again
that may be just me - reeded and non-reeded.
Bassoon and Oboe would be more difficult to
play than a Clarinet and plus makes your lips
numb!



Hab ab Nab Bae! (Have a nice day!)

(I've sold all my instruments here in my house
except for my Yamaha keyboard and the old
60s Yamaha Recorder, Tambourine, and Rhythm
Sticks - but at my mom's house, my Wurtlizer
Piano is there along with the very old Antique
Violin which I have it destringed and have fake
strings on it but very loose as not to warp the
neck, and the bow is also loose as well as not
to warp that either. I can play the Violin and
that's real horse hair on the bow. I have my
regrets of giving up the Viola and the old Bundy
Bb Clarinet that I practiced on - but being deaf
now, I can't hear anymore, but I can still play,
they now have electronic tuners where I can
now see if I'm in tune and go on from there, but
I wouldn't be able to hear what I'm playing and
plus, I read music. I can't play and never could
play by ear - however, my sister can go both
ways but she plays by ear better than she can
read music.)

=============================


However I can understand and fully relate on the
back-to-back seizures, I get them too. It's no fun!



Give her lots of hugs for me please!

[DAVE1967]

I'm venting! I am so upset right now I could cry!

I got a phone call from the school nurse just abour 45 minutes before dismissal today. Shan was in there with a trembling leg. Okay. I asked to speak with her. Once she was on the phone I asked what was going on. She responded, "Well, um, I....Well, um, I....Well, um....Well...."

I said "It's okay honey. Let me talk to the nurse."

When the nurse returned to the line she said, "That's odd she was just speaking so clearly about what was going on."

I explained that Shan was having a seizure.
She said, "Now?"
"Yeah."
"Right, now?"
"Yes."
"But she looks fine!"

Oh my GOD! What do I have to do to get these people to understand? I've been in there every week telling them repeatedly what to look for!!!

But if you think the story ends there...You'd be mistaken. After getting home and waiting for Shan to have a functioning brain moment I questioned her about her day.

1st period~fine
2nd period~Teacher asked her a question. She knew the answer but couldn't get the words to come out right. So she stopped and tried again. Eventually, the teacher called someone else.
3rd period~She said the teacher sounded like the teacher from Charlie Brown. Far away and fuzzy and she couldn't understand the math.
4th period~Became enraged and slammed down her flute. 20 minutes later (at the end of class) she was disciplined and given a warning. If the behaviour happened again she would no longer be allowed to attend band.
5th period~lunch~ no incidents that Shan can remember
6th period~again no incidents that Shan can remember
7th period~Leg starts trembling
8th period~Finally goes to nurse for leg tremble, and of course I realize that she is having difficulty expressing her thoughts.

Am I over reacting or did the school miss like 4 warnings that she was having seizures? I don't think I would be this upset if I hadn't gone in there repeatedly and talked to them about what her seizures look like. The band teacher is the only one who I did not tell about the attitude being a seizure. I'm not sure why we didn't speak about it other than the photosensitivity seemed to be the biggest trigger in the band environment.

Needless to say, I am fed up with the school! I have asked for a 504 meeting but no one has called to schedule one so tomorrow I am going to go to the school and meet with the principal of the middle school to get things started. One way or another...

I am also going to take a written list of Shan's seizure symptoms. And every teacher, aide, bus driver, lunch lady who has anything to do with Shan WILL receive a copy. It will also have a clear cut section to tell them "What to do". Although, if I don't get some real action from them soon I may tell them where to go and how to get there!

As always, thanks for letting me vent.

Hi my name is Dave & I was diagnosed with Epilepsy at the age of 14 months. When my dad foundout I had Epilepsy he told my mom , He's your son you takecare of him. When I foundout that was the case I disowned him at the age of 15. All through my schooling the teachers at the schools couldn't handle my moodswings through my medications & I was bounced from school to school . I went through 5 different schools until I finally graduated from HighSchool Thank God I made it cause the teachers were treating me like a (RETARD) i'm sorry to use that word. But after school I was free from it all with the exception of still living at home with my mom due to my siezures I couldn't be out on my own. Well as far as the aftermath of being out of school for good (YES) reality did slap me in the face & I did start to notice I can't ALWAYS depend on my mom or any other family members forever , for nobody lives forever EXCEPT The Lord Almighty & his son Upstairs. I'm now 41 years old & living with my fiancee ALICIA in KY , we met over the internet (I KNOW HOW OTHERS FEEL ABOUT IT BUT WE MADE IT WORK THROUGH US) . I hope my note helps you a bit to let you know what I went through . For my fiancee & I it's been 4 years & 4 months (Feb 19Th 04) When we first started seeing one another . Oh by the way How do I put a pic on my profile i'm new to this site?

[Katz]

It ain't yer imagination these people are actually stupid and at least your kid has a brain proven by her numerous EEGs. I'd say that you oughta get her to a different school where they can handle her needs or homeschool and if it is a public school then you are in luck I know how to get them. I think you should definitately scream to the press over the mistreatment of your kid. Usually burocrats can find their brains when they understand they can lose their job if they don't. A threat usually works when reason fails. They think they can keep right on ignoring your kid's condition without any consequences. So it is up to you to show them they are mistaken and that they can't. You can do that by talking to the press and it won't cost you one cent. You have to get her to agree to talk to the press and warn her ahead of time about what you are going to do so she can decide what to do. I think she should decide to stand up with you since if she does it saves time later but if she is a normal adolesant or kid then she won't want to. Yet tell her to think about the other kids they mistreat because they just don't care. I may be able to help if I know what state you live in so I can find out who is in charge there and feed them to the media prior to the election. Politicians typically look for a scape goat so you can get them removed if you play your cards right and apply pressure. If they do not care give it to their opponent then let them know you did to get their attention. Then tell them if they are willing to do something to correct the error by firing everyone that you do not think treated your kid right then you'd agree to forget this whole thing. Election time if you put a news item then they will maybe lose enough votes to cost them the election and the person who wins will understand that he only sits there as long as you are happy with his job performance and that you are a very dangerous person so when you tell him what you want then he will likely agree because you have demonstrated your willingness to remove anyone who doesn't do the right thing by your kid. Publicity will create enough pressure to destroy the careers of anyone who raises any resistance to that. So tell the media that you think your child is not only being treated badly but you've told them repeatedly what to look for and they do not appear to care about anything other than cashing their next pay check. If they deny it then it will make people wonder even if they do not know your family at all. Kick one petty burocrats hind parts and then you'll get their attention destroy one person higher than they are and they will worry about their own jobs since they know you can have them fired in a few months so then their memory will improve and if not then get them fired and tell the next person what you did to the person who had their job before they did to tell them that you are serious and have no problem doing the same thing to them if they do not pay attention. If you can't do rutheless and cold try to get the band instructor fired too as well as a teacher who is simply ignorant and harmless.

[alivenwell]

I agree with Katz. I've dealt with various people in various settings, including public school, college and employment.

Putting it bluntly, I've seen some pretty ignorant people, or downright discriminatory people. I've also seen some compassionate, kind people. And, I've seen some people change their attitudes from ignorant to compassionate ones.

At that school, the employees/teachers/bus drivers... are all following some set rule. The superintendent, or school district's intermediate unit should know about this issue. They will set rules, or reinforce existing ones, to treat your daughter properly at school.

The people at the school need to be informed in a proper, legal manner. Go to the top with a lawyer's document if they do not treat her properly. We went directly to our superintendent and discussed our problems. We did not bring a lawyer. We worked with one teacher, gave her an unsigned letter, she delivered it directly to the superintendent, and we got positive results.

We did have an informal meeting with the superintendent. The problematic person at the school was gone after that meeting.

[Katz]

I'm venting! I am so upset right now I could cry!

I got a phone call from the school nurse just abour 45 minutes before dismissal today. Shan was in there with a trembling leg. Okay. I asked to speak with her. Once she was on the phone I asked what was going on. She responded, "Well, um, I....Well, um, I....Well, um....Well...."

I said "It's okay honey. Let me talk to the nurse."

When the nurse returned to the line she said, "That's odd she was just speaking so clearly about what was going on."

I explained that Shan was having a seizure.
She said, "Now?"
"Yeah."
"Right, now?"
"Yes."
"But she looks fine!"

Oh my GOD! What do I have to do to get these people to understand? I've been in there every week telling them repeatedly what to look for!!!

But if you think the story ends there...You'd be mistaken. After getting home and waiting for Shan to have a functioning brain moment I questioned her about her day.

1st period~fine
2nd period~Teacher asked her a question. She knew the answer but couldn't get the words to come out right. So she stopped and tried again. Eventually, the teacher called someone else.
3rd period~She said the teacher sounded like the teacher from Charlie Brown. Far away and fuzzy and she couldn't understand the math.
4th period~Became enraged and slammed down her flute. 20 minutes later (at the end of class) she was disciplined and given a warning. If the behaviour happened again she would no longer be allowed to attend band.
5th period~lunch~ no incidents that Shan can remember
6th period~again no incidents that Shan can remember
7th period~Leg starts trembling
8th period~Finally goes to nurse for leg tremble, and of course I realize that she is having difficulty expressing her thoughts.

Am I over reacting or did the school miss like 4 warnings that she was having seizures? I don't think I would be this upset if I hadn't gone in there repeatedly and talked to them about what her seizures look like. The band teacher is the only one who I did not tell about the attitude being a seizure. I'm not sure why we didn't speak about it other than the photosensitivity seemed to be the biggest trigger in the band environment.

Needless to say, I am fed up with the school! I have asked for a 504 meeting but no one has called to schedule one so tomorrow I am going to go to the school and meet with the principal of the middle school to get things started. One way or another...

I am also going to take a written list of Shan's seizure symptoms. And every teacher, aide, bus driver, lunch lady who has anything to do with Shan WILL receive a copy. It will also have a clear cut section to tell them "What to do". Although, if I don't get some real action from them soon I may tell them where to go and how to get there!

As always, thanks for letting me vent.

Babe you sound like a great mom. I wish my mom had been like you. If it doesn't work just staple it to their foreheads. I'd tell the band instructor everything so he'll know the deal and be able to deal with the problem. Sometimes it doesn't work no matter what you try to do because the people involved or in charge just don't care. If this doesn't work then feed the entire school's staff to the media because you tried to make it work and got no where. This is your next recourse if talking to them doesn't work. Heck I'm angry at them for doing that to your baby and I don't even know you or your kid. Drop me a line if it doesn't work and I can raise enough of a stink to cause them a whole lot of trouble. I'm great at causing problems for lazy burocrats. Kathryn (Katz) Heitmann at yer service. I had some fun kicking the mess out of lousy jerks in two states and I know every dirty trick in the book politically. I know most of the decent disability advocates or have a pretty good notion where they are or know how to find them. I'd be willing to take these turkeys on because your kid doesn't deserve this.

I'm the sort would have flipped the band teacher the bird and walked out even if they kicked me out then I'd not care. I'd say they failed to do their job not due to the fact they had no idea what to do with this kid but because they just don't care. So you threaten their rep if your way doesn't work then try mine which will wreck them state your intention of talking to the media about their gross negligence regarding your kid. The 504 isn't likely to work unless you add something to the mix that they won't be able to ignore. It isn't because they are stupid that they fail to understand it's just that they do not care about Shan and think if they ignore the problems then they won't have to actually do anything to help her. Your mistake is playing by their rules. Telling them what to do with themselves though satisfying doesn't help you win but feeding them to the media might do the job. The only way to fight an opponent like this is to drop a shot into them that really hurts them badly. When they don't think you are willing to do this then they have the power and when you decide to expose it then they will lose every time. I know a thing or two about these types of folks and know how to take them on.

[CJR]

I made a chart and took it to the school. Hubby and I spoke to every teacher and aide that comes into contact with Shan. We thought that EVERYONE had gotten the message...We were WRONG! AGAIN!

Just last weekend we found out that Shan had been sent to lunch detention repeatedly for missing or late homework assignments by One of her teachers. Hubby and I went directly to the Principal. I explained that Shan cannot be held responsible for late or missing work right now. I also explained that she has completed all of her work but then has an E. moment and can't find it and has to do it again. This cycle can happen to or three times per assignment. The Principal tried to tell us that the "Support Room" isn't just a place for kids in trouble~it's also a place for kids to get caught up or have a quiet place to do their work. I explained to her that if Shan feels like she's been given a lunch detention...and she is missing the privledge of eating with her friends...then it IS a lunch detention. By noon that day, she called back and said that she had resolved the problem and that she had gone in search of Shan and found her in the support room for yet another Lunch Detention! She immediately removed Shan from the room and they had lunch together so that the principal could tell Shan how proud she was of her, etc.

We have 2 full days and 2 half days of school left. So I'm hoping that we can get through without any more school incidents. I've also finally begun the 504/IEP process for next year. That meeting was a hoot! Thanks to the abundance of info given to be by Tinasmom I was in charge of the meeting from start to finish!

[BuckeyeFan]

Standing ovation for you CJR for taking control. Those school meetings are so important to a child's development and quality of life. One of my daughters reached the point where she was afraid to go to school (for other reasons). That should not be the case for any child anywhere.

God Bless you parents!