need help

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

When she gets into trouble you need to follow the rules of the school. She is old enough to know that it really doesn't matter if no one else gets caught. She is responsible for her own actions. The medication will cause her to take risks, and use poor judgement at times, but ultimately she is responsible.

My favorite saying is: We expect you to spill your milk from time to time, it is how you clean it up that matters.

Sad is okay, frustrated too. When dealing with the school keep it contained. I know I had tears from time to time, and I think they all thought I had lost it. I have my support at the school, and they are who I deal with. I don't even bother with the ones that have no idea how to offer compassion. I was told by a VP that if that is what I wanted I wasn't going to get it. Ya right... she was asked never to be in an IEP meeting or deal with me without another admin present.

Know your rights. Stay strong by being educated. READ READ READ
If you mess up one day, wake up the next knowing that you have learned to do things differently. Keep loving her, and hugging her, and telling her that you will get through this together.

Get a 504 plan if you don't already have it.
 
the more natural approach

I felt the need to reply again-I'm not saying that med/s are the only way to deal. I feel like to each his/her own just good luck on finding whatever that may be for your daughter-neurology, epiltology and humankind for that matter have come such a long way since I was initially diagnosed over 25 years ago-so where my parents were a bit traditional and trusting of physicians and gave me meds with no questions asked. I'm sure there are alternatives to be explored. I don't have children yet. Maybe someday, but as far as knowing what to do when she gets in trouble i'm no help for you at all. I just know its not her fault and at this point she has little to no control over her actions (which can't be a nice place for her to be right now).
Be encouraged no matter whats going on.
 
Yes I think that is the difference in medicine today. As parents we have all the medical research at our fingertips and can connect the dots and then do a Google search. This at least gives us a wealth of information to discuss with the doctors. We aren't just kept in the dark and handed a prescription to fill.
 
I'm so sorry for your hardship and so understand your frustration. I think it a good idea you're switching Dr's in May but please try and be sure the new Dr an epileptologist as they really are better prepared, I think than most neurologists. Also a neuro psychologist helped alot with my kids as well. I am also having my daughter home instructed for a few weeks while she "supposedly" adjusts to new meds. Your daughters seizures started at puberty? Look into juvenile myoclonic epilepsy. Usually they do well on one med and usually that meds.. supposedly Keppra.
We have all been in your shoes. In my humble opinion, climb in a shower and cry till you cant cry any more and then get out dry off and get in gear to become a google queen. Keep a journal of how your daughters days goes. Look for triggers that bring on the seizures. Good sleep habits, eating habits, exercise habits, stress reducing techniques all help.
Talk to her and love her. As hard as it is for you, it is usually worse on them.
Good luck and hang in there
joan*
 
So you think even though I already have an IEP, that I should have a 504 plan too? I do give her consequences when she does something wrong but then I am afraid that I will drive her to hurt herself. This is where the confusion comes in, I know she has to learn right from wrong, I am just worried all the time. Thank you for all of your understanding and support. As of now I am still waiting for her neuro to call me back, I am sure that it won't be today. Usually it takes 2-3 days. Until then, I am going to start looking for a neuro in my area.
 
Update

Okay so the nurse finally called yesterday. I basically told her that I am not taking NO for an answer, I want the meds changed. She said she will get back to me today. Thank all of you for being there, I feel 100% better today.:woot:
 
Sorry this one's going to be real long. I've seen a lot of things on this sight that upset me but your's has hit hard. I cried for the first time on this site this morn. After reading other peoples stories my E doesn't seem so bad. I too started seizures at age 9 even though I hadn't started my period I now know they were hormonally related. I put myself on the pill when I was 18 because my periods were so bad and walla they got better and the seizures disappeared. I didn't have them again until after my third child was born. I had been either on the pill, pregnant or nursing for 18 years. Something changed after she was born. When she was 6 weeks I had a intense Deja Vu I thought they were postpartem hot flashes. I explained them to many Dr,s and they agreed. Progesterone helped somewhat, but since the "episodes" didn't really bother me I stopped. I went on like that for 8 years. In 2007 my then 14 year old son was diagnosed with a brain tumor. I thought I would fall apart but instead I became his advocat. He's always needed one. He was always big for his age and a bit nuts, alot of energy. He was diagnosed with ADHD at age 5. We avoided meds and the school was great to work with ( a small private school) it wasn't until 4th grade when the kids wouldn't play with him that he asked to go on meds. We were lucky and the first one worked with no side effects. He stayed on it for two years then asked to go off he though t he could handle himself. He did well until this year and went back on just for grades and is doing well. Now how this all ties in together. He went through early puberty and it wasn't until his tumor was found that it all fit. The tumor is in the optic nerve and sits so close to the pituitary gland it was probably causing the early hormonal changes. It's easy to figure everything out at the end. We went through many awful DR visits but you have to keep researching and looking for the right one. The worst day was when the oncologist at children's hospital suggested a 72 week chemo regiment. That day I did fall apart. I went home and literally curled up into the fetal position and asked to be left alone. This had been about three months since finding it. The next day I got a call from St. Judes Childrens Hospital and had him in the car that weekend. They confirmed that it was an optic glioma - NEVER DEADLY and NEVER CANCEROUS. No Chemo. The DR. up here could have killed him. The tests alone were awful. You can imagine our relief. I drove back to Michigan the next day. Then 3 weeks later my simple partial seizures changed. It was probably the stress from my son. I fianally had one in my OB"s office while she was asking me about my hot flashes. After she said "That is not a hot flash". She called the neuro that day and they took me off the road. I'm on my third med and still not controlled. They come every month right before my period. The Dr's agree that that's my trigger but don't seem to have any answers. Catamenial Epilepsy is real but I can't find good current research. Now have to become an advocate for myself. Hoping to find a good hormonal treatment. As for your DR. try calling the new guys , you gotta be pushy, tell them of her suicidal thoughts and see if they can get her in sooner. Don't let those bossy receptionist and nurses ignore your plea - keep bugging.!!! They work for us not the other way around. Sorry for going on so long. God Bless keep fighting and don't forget to take care of yourself too. Iv'e got tons of other stuff if you need more info.
 
It took me so long to write the last one you posted before me. Good Job. This place really does make you feel better.
 
You know something that you said struck a chord with me. After the first seizure, she had an MRI and since I worked at the hospital the tech told me that he didn't see anything but that she had a big pituatary gland. Do you think that is the reason that she started puberty early? Do you think that maybe she could have a tumor and it can't be seen because her pituatary gland is big? I forgot all about that until I read your post. Hmmm...just let me know what you think. I will remember that too about them working for me, I just had to have a good cry and I feel much better now.
 
I hate to play Dr. but could be. My daughter has a friend who has epilepsy and started her period at age 9 and is also extremely tall. I've found a lot of info here today on Catamenial Epilepsy. Progesterone, Estrogen and seizure med manipulation. I'm seeing my Epileptologist next and will discuss it with him. It's so much to keep track of.
 
My son has a great Neuro Opthamologist and he's convinced that enlarged pituitary glands cause early pubity and are quite treatable.
 
Well I will be really happy when she sees the Dr. in May because they are specialists. I am going to try to see if I can get her in earlier. I don't think I can wait, she needs something done now.
 
I know this is a scary and emotionally overwhelming situation to be in. It sounds like the meds are totally overloading your daughter and her doctor doesn't have a lot of experience if he feels that hormones play no role.

I second Robin's suggestion of looking into sugar imbalances, nutrition deficiencies, etc. Food sensitivities can play a significant role in seizures as well.

Your next doctor's appointment is in May, but you don't have to sit back and do nothing while you wait. Become proactive. Do some research into health, nutrition, and alternative therapies. We're successfully controlling my son's seizures with a combination of diet, nutrition, acupressure, and cranial therapy.

Healing begins within. Covering up seizures with medications is just like slapping a band aid on it, except these band aids come with a whole list of side effects that seem worse than a lot of the seizures they are suppose to prevent.

Take the time to do some research so that you are informed. Making healthy changes now may make it easier for her new doctors to wean her off of some of these meds. You may find that in the end she doesn't need medication, or at the very least she may be able to handle much smaller doses.

As far as taking your daughter out of school, you need to carefully weigh the pros and cons. Is being there subjecting her to humiliation or possibly damaging her self-confidence in any way? Will bringing her home help her feel better about herself, or worse? Will bringing her home help you cope better and in turn develop a better relationship with her and give you more hope regarding this situation? Will this be a permanent decision, or just a temporary solution to give you time to get the meds and everything under control? Talk with your daughter about it. What does she want? What would help her most in this situation? She's almost 12 and fully capable of being a part of this decision.

I currently home school my children. I really believe this a positive thing for them. They are thriving and excelling in everything they do. They're both well adjusted. We get out and interact socially quite a bit. The best thing is, my son is constantly surrounded by those who understand his situation and who encourage and support his every endeavor.

Don't give up. You're a wonderful mother and doing the best you can for your daughter. You've taken the first step in making a better future for her, you're reaching out for help and not accepting the opinion of one doctor. Hang in there :)

By the way, welcome to CWE :hello:
 
I am really going to look into the nutrition thing. I would much rather have her off of all the medications. I can't see how all of them don't have some negative affect on your mind and body. I just want something that keep the seizures away without killing her in the meantime. I hope they call back soon with some news about changing meds, but worried at the same time if she will start having seizures again now. My father had Epilepsy before he passed and my mother started having seizures in like 1996? I am surprised I haven't had any. I am so glad I have all of you, I feel so much better already.
 
Hi Brandiet! I'm the resident special ed. teacher. :) I'll tell you right now, that your daughter doesnt' need to have both a 504 and an IEP/ILP. The IEP supersedes the other. And technically, the IEP deals with educational issues such as modifications in the classroom to help the student access the curriculum, as well as setting specific educational goals. Now, the issues your daughter is having are strictly medical. If anything, her pediatrician or Neurologist might want to right a letter to the school stating that she is in transition on her medication and that any disciplinary issues at this time might be a result of that. So, if she hits the max number of days of suspension (which usually results in expulsion) they'll have it on record, as will you, that what happened was a result of her disability, and not willfulness on her part. Hope this helps.
Oh, where I teach, the max number of days suspended is 20. Also, when kids get sent to OCR/ISS (detention) for four periods it equals one full day. Also, when she's constantly sent home, it's considered an involuntary change of placement, which means that the school is violating her IEP.
 
Well they don't really do much as far as punishing her other than sending her to the principal's office. He usually just tells her that she cannot exhibit the bahaviors that she is exhibiting. I think she has only gotten one detention. Okay so since I already have the ILP/IEP, I should be okay. I hope I can find some way to help her, right now I think "how is she ever going to live her life the way she is now." I think she is so shy and wants friends so bad that she thinks being the class clown will get her friends. Her behavior is so awkward sometimes that I think she just alienates people. I feel so bad for her, I just want her to have one good friend.
 
*chuckle* Know what you mean....negative attention is better then no attention at all. That, and she'd have a definite roll, instead of being the girl that disappears at the back of the room. The thing you want to do is be consistant with dicipline and praise her and give her attention when she has a good day or shows really good behavior.
 
Yes that is what I told her. She can go on the computer and have her phone if she has a good day with no negative reports. I have to be consistent but sometimes I feel so bad for her that I feel myself caving in.
 
Beware caving in...it is the most tempting thing to do. But when you cave in, you show that you don't take the rules seriously. As I've told lots of parents...I don't care if it's their birthday or Christmas...rules are rules and consequences are consequences.
 
I totally understand that. I guess when she has just cut herself the day before, I feel like she might just go over the edge and kill herself. I just have to remember that I can't control everything, and I have to stick to the rules. It is just really hard when she is telling people that she wants to kill herself. I have been really sticking to the rules lately.
 
You must log in or register to reply here.
Back
Top Bottom