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Old 03-06-2005, 11:58 AM   #1
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buliem HB User
Unhappy So depressed

Hi all. I haven't posted in awhile since nothing seems to change and/or things get worse. I really need to vent. My son's teacher expressed to me on Friday that we may not want to leave him in that particular school for next year. It is a private Montessori school. He has had the same teacher for the past two years but will have to move up to the upper grades 4-6 next year. Apparently she feels that because he is exhibiting some behavior problems (hyperactivity, needing to get up and move and having verbal outburst when he's frustrated) the other teacher may not be able to handle him. He has always been a bit inattentive but never hyper really until he was placed on Keppra as an adjunct to his Depakote. Before Patrick's E was diagnosed in Sept. she was telling me he would be fine in the other class, that he was more advanced than some of the others already there. He was in fact excelling there. We thought we finally had the answer to his educational needs. Apparently with seizures, meds etc he isn't doing very well. It's really hard for him to function the way he did previously. His brain just doesn't work as well as it once did.

This school is very high performing and I'm sure she thinks he may have a hard time keeping up. So what?! This is where he has friends and feels safe and comfortable. I feel he is getting no sympathy and he has in fact become recently quite despondent. A couple of weeks ago he told me that he wished he didn't have E and that maybe he should just "go to Jesus" now. Taking him out of that school will be devasting to him. I really don't know what to do. I'm at my wits end. We could go back to public school but I really don't think that's the place for him at this time. We really felt this school was a life saver. I am so worried that he may be forced to leave. I really don't know what I'll do. Any suggestions will be greatly appreciated. Why would someone who professes to care (his teacher) suggest taking away his one life line. It breaks my heart.

All this is causing so much stress for me and my family. My husband is sick of me crying and if he didn't love me so much I'm sure he'd ask for a divorce. He always thinks I overreact. Maybe I do but this child is my life.

 
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Old 03-06-2005, 05:50 PM   #2
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Re: So depressed

Hi Julie,

I'm so sorry things are a little rough right now. We were faced with the same decision with Katie. Only it was to remove her from public school because of the cruelty. I hate to tell you that, but I feel honesty is best. I worked at the same school Katie was at for middle school. You'd think they would have given her a little extra attention because of that...nope. We had 3 guidance counselors (one for each grade level...6,7,8th) that made $60,000+ each and spent most of their time dealing with kids from divorced families who needed hand holding or with kids who "didn't get along". Katie had a terrible 6th and 7th grade year and we said enough was enough!

We pulled her out and she entered an independent private Catholic school. She was there for 3 years until moving to the new highschool she is now in. (which is Lutheran). Both schools have been tolerant, helpful and a safe and loving environment for her.

Maybe this is an avenue to pursue. I wish I could tell you it will be ok and easy. Kids at the middle school or pre-middle school level are horrible. I have seen kids at the elementary level that I thought were wonderful, until I moved over to the middle school and saw them change before my eyes. The 11-14 age range is difficult. Finally when you get to highschool things start to calm down a little. A little more tolerance and "minding of the own's business".

I would have a meeting with the M school. Katie and Andrew both attended M pre-school. It is a wonderful program. There must be some things they are concerned about. See if you can find a middle ground meeting place. I would guess they are seriously considering not having Patrick back if they are telling you now. They are giving you time to consider other options.

I also understand the Keppra situation. My husband and I just talked about that last night!!! Katie is quite different not being on the Keppra since November. Not as many teary outbursts or ups and downs emotionally. Also less physical with her brother. I do feel this med caused some issues with Katie. Maybe check into another med. I know the med thing is a pain in the butt. Tell the doc you don't like the changes you see in Patrick and tell him what the teacher has said.

<<<ALSO>>>if Patrick is talking about going to Jesus, that is a serious sign of depression Julie. He needs to be off of Keppra!You also mentioned that he is more despondent...BINGO!

Never feel bad for crying for Patrick. That is our job...to suffer through and with our children. I had MANY of those times over the last 16 years with Katie. And I don't apologize for any of them. That is a sign that you would do anything for Patrick...anything.

All by best to you and a (((((((((SUPER HUGE))))))))))) hug...You've got my ear and shoulder anytime...

Vicki
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Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

 
Old 03-06-2005, 07:22 PM   #3
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buliem HB User
Re: So depressed

Vicki,
Thanks for the advice. We've tried a Catholic school and we had a horrible experience there. I attended 12 years of Catholic school and while I did get a good education they aren't always the best place for someone who is a litttle different. Just my opinion and observations.

The kids are super sweet at this school and Patrick really loves it. I feel he is being discriminated against because he has E. Also this school takes the standardized tests early. I think the teacher is a little concerned he won't do so well this year. Maybe she was just having a bad day. A few weeks ago she told me she just couldn't get him to understand his math. Well he finally got it. Last year she was amazed at how well he was doing. Sheesh! She praised him and said she only wished the others had done so well. He's only been on meds six months and we all know how it can be a very fine finesse. I will do the best I can to keep him at this school. I feel that leaving while he is going through so much, still suffering from seizures and side effects from meds will crush him.

I happened uponed something today regarding learning problems and meds. Basically it said that when we compare a "normal" child and one with E in regards to learning the normal child swims with the current. The child with E on the other hand has to swim against the current (fighting seizures and the effects of meds) to reach the same level. Still people think that people with E are stupid. They have no idea how they have to push themselves.

We go to the neuro on Friday. I'll see what he says about the Keppra. Patrick doesn't seem depressed all the time. Maybe the comment was related to the fact that he had two grand mals that day. His neuro usually downplays side effects and he's super willing to push the levels of drugs very high. Patrick's on 1250 mg of Depakote a day and 750 mg of Keppra. Seems like alot for a 105 lb kid. Anyway we will talk to the principal about next year. I know for a fact that patrick isn't the only one who acts up some of the time. There are always kids with issues.

That said I'm so glad your Katie is doing so well. I'm glad she got off the Keppra. I really wish my son was a candidate for surgery sometimes but since he has generalized seizures its not going to happen.

Thanks Again,
Julie

 
Old 03-07-2005, 07:41 AM   #4
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Re: So depressed

Hi Julie,

I am always for keeping a child where they are first...because of the comfort level and friendships. I know you have spoken highly of this school for as long as you have been on the boards. That is why I mentioned seeing if you can meet on some common ground with them. Maybe supplementing Patrick's schooling with some outside tutoring might help with the reinforcement of material. It really helped Katie last year in Geometry. She went twice a week (1 hour each) for the first month and then went down to once a week for the last 3 months of school. It isn't cheap...we paid $45.00 an hour. But that was for highschool Geometry, they may weigh lighter for the elementary level.

I only mention the fact that they could be considering not having Patrick back because there must be some issues they are concerned about. Discrimination is a difficult thing to deal with. It is very possible they could be looking for "the easy way out". Being a private school, they could argue that he doesn't fit the type of student profile they look for any longer. That he requires more help and attention and they can't or don't want to hold up the other students. That is how some private schools can "get away" with asking people to leave or removals. I would ask if they have been documenting anything on Patrick. I believe they would need to have documented cause to not have him back, not just a verbal comment that the next teacher might not be able to handle the situation. I don't know about your state, but we are in Wisconsin. I would look into what can be done or not done. I think contacting your state educational headquarters, the state superintendant's offices.

I just want you to be prepared. If you want Patrick to stay there, which it definately sounds like, you need to go in with all of the information you need to keep him there. Let them know, what you know. They may be absolutely wonderful people...but when challenged or put in a corner, things can change dramatically. I have seen it happen, both public and private.

I've read similar info on the learning of kids with E. The affect of the meds on the connections in the brain. Katie definately did better earlier on in her schooling. As we needed to change and add meds, that is when we noticed the difficulties. And to keep things in proportion, the info became more difficult as well. That is why I have found reinforcement to be a key helper. Reinforcing that memory center.

Keppra is a funky drug for many. I didn't think Katie had any side effects from it, which I posted here a few times. But now that she has been off of it for 4 months, we have noticed a difference. Katie was on Keppra for 3 1/2 years. I know you will keep your eyes open for anything. You are Patrick's main advocate and a great and loving mom!

Take care and thank you for your kind comments regarding Katie...we continue to pray for Patrick and our other E board buddies...

Vicki
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Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

 
Old 03-07-2005, 11:56 AM   #5
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buliem HB User
Re: So depressed

Vickie, this is what California Law States:

Individuals with disabilities are entitled to full and equal access as other members of the general public to private schools.

I don't know what this means to us but I don't feel this school would like a lawsuit on their hands. I wouldn't want to bring one either. Besides we own a business in our town and conduct business with many other people who could be potential cutomers for this school. In a city of 130,000 you'd be suprised how fast bad or negative news travels. The Principal/ owner is very well connected in the community with the City Council etc but so are we. Thanks again for your advice.

Julie

 
Old 03-07-2005, 12:04 PM   #6
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debvid HB User
Re: So depressed

Hi Julie

It is hard to move your child from a school they have been going to. We had this decision to make with Bonnie. She was never a problem before, Straight A student, etc. Then E got worse and she started having problems at school. You would think they would understand, NO! We were going to move her last mid term, but I didn't want to change in the middle of the school year, while we were changing meds, seizures were acting up, etc. We finished out the year and then started a new school this year. It was a public school before, but it was out of our district. I felt I couldn't really fight for Bonnie there because they would just say, you aren't suppose to be here. Everyone knew we lived out of district and there was no problem with this, she had been going there for 9 years! It's funny though, when there is a problem, their attitude changes. And Bonnie was not a big problem at all. Anyway we moved her to a public school in her district where I can fight for her if need be.

It's tough decision, public schools have more resources, generally, and they can't kick you out like private schools can. But with this comes the problems of public schools. Bonnie hasn't had any problems with this school and the teachers I have talked to have been very understanding about her situation. I believe it doesn't matter as much private or public, but the teachers you end up with.

Bonnie took Keppra for a short period last year. She did not like how it made her feel. She was more aggressive during this time but we were changing meds often then. She has had periods of suicidal tendancies, thank goodness we're not going through that now. I know how difficult that is for you. I feel Trileptal was the problem for Bonnie. We are trying to get her off of it. Bonnie takes Lamictal and Trileptal now. Hopefully we will get her off the trileptal this summer. I am going to see if maybe we can try cutting it back a little more now, since we have increased the lamictal. I'm afraid if her body gets use to this much Lamictal and the trileptal that is what she will have to stay with.

It is so much harder for E kids. You would think the teachers would be a little more understanding. They need to be educated on this. I can understand if there were major discipline problems etc. But I think most of the time it is minor things. These kids have it so hard. Bonnie's neuro said once about Bonnie, "She can't see well because of the meds, the meds makes her feel bad, the E makes her feel bad, and now they are taking away everything she cares about (cheerleading)". That is just what the schools do sometimes.

Has Patrick ever taken anything for the adhd, ex. adderral? Bonnie's neuro prescribed it the end of '03 to counteract the side effects of the E med. She took the time released at that time and it was a nightmare! We stopped it. This past Dec we started her on it again but not the time release, just the reg adderral. It has helped her to focus more in class, I think she probably needs a little higher dose. Maybe that would help Patrick, if you haven't tried it yet.

This could just be this teachers opinion, not the school's stand. Since he was doing so well before, if the med situation is taken care of maybe he would do ok there. Maybe adjusting the meds or changing the meds now would show the difference and you wouldn't need to move him. This way the school would see it now. Hopefully they would be willing to work with him. They have to be at a school that will work with them, at the least not hinder them.

It is so stressful for the family. I'm glad you have a husband that loves you very much. We go through a lot of ups and downs with this, at least Bonnie does. When Bonnie wonders how I find out things, I tell her God just puts me in the right place at the right time to help her. Good luck with it all. Let us know how it goes.

Debbie

Last edited by debvid; 03-07-2005 at 12:12 PM.

 
Old 03-07-2005, 01:04 PM   #7
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buliem HB User
Re: So depressed

Debbie,
Thanks for the suggestions. I always fight against the thought of adding an ADHD drug but someday who knows? Before we knew what Pat's problem was we often thought he had a little touch of the inattentive type. Turns out it was most likely the seizures. At the time I didn't want to give him stims because there is bi-polar in my family and they can bring that out.

Patrick has generalized seizures, petit mal that have progressed into grand mal (tonic clonic) It is my understanding that stimulants lower seizure threshold. He's still having grand mals although they aren't as violent as they once were. He still stiffens, jerks then passes out and wets himself. He then sleeps for hours afterwards. The neuro has made it clear that these types of seizures can turn in to status epilipticus and that he could die or suffer major brain damage. I'm not really willing to risk it just to make his school happy. Maybe if he has a long period without a major seizure I may broach the subject with the neuro. It's been two weeks since the last big one. Right now adding a stimulant may only make his seizures worse and then he may have to add even more AEDs. I feel he's on quite enough meds already since he went toxic about 6 weeks ago from the depakote. At that time the neuro was ****** because the ER wouldn't let me give him his depakote and he missed a dose. He threatened me with the whole death and brain damage thing. Somehow I don't think he'll go for the stimulant. Just going to bed an hour late or having an argument with us can give Patrick a big seizure. He's just not stable right now.

Julie

 
Old 03-07-2005, 09:04 PM   #8
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Re: So depressed

Hi Julie,

I think you would need to have the law interpreted by someone other than me, and have it related to your situation. Unfortunately there are always loopholes. Things are written in such a way to add "room" for interpretation.

I can understand your "community" dilemma. We are in the same situation. We own an accounting practice in a suburban town of Milwaukee...a town of 40,000. You have to hear this...not to at all "one up" your story...but the whole "word traveling thing". We moved out of an affluent subdivision (no hanging laundry, no extra vehicles in the drive, same mailboxes, etc.) here in town after having lived there for 8 years (a total of 14 in this town) Because I turned down an invitation to a "coffee" ONE time, I was never invited to anything else over the 8 years. Why we lived there so long, don't ask me. So, we moved "across" town (2-3 miles) to a small ranch in a small un-named subdivision. We did this to help afford the private tuitions for Katie and Andrew (which I know you can appreciate ). We now have the MOST wonderful neighbors! They wave, come over to chat, invite us to little cookouts, let us borrow their golf cart to move our mulch around the yard...etc. It is wonderful. Anyway...I got off on a tangent there. The RUMOR around town was that our business must have been going down the tubes and that is why we had to leave "the other subdivision"...we couldn't afford it anymore. It has been 3 years since we moved and I have NEVER explained anything to anyone. I just let them gossip and do whatever. I laugh...I think, thank you Jesus for giving me the sense to not fall into that garbage anymore. Thank YOU for coming into my life and my heart, that I am comfortable with who I am and owe no one an explaination.

There was a reason for all of that, and I just had one of those "nearing 40" moments...which means...

Stay true to who you are and what you believe in. If you feel that is the right place for Patrick, than fight like to keep him there. Find a way to make it work. It is always better to be positive before resorting to the ugly. My intent was only to give you an idea as to what they might be thinking, since I worked for a school district. I didn't mean to sound that there was no hope of Patrick staying there. It ain't over til it's over.

Thanks for the kind comments toward Katie...we will add extra prayers for the school; to keep their caring hearts open to Patrick...

Vicki
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Proud mom of Katie, the strongest and bravest person I have ever known! GBTG.

Last edited by tkdmom96; 03-07-2005 at 09:05 PM.

 
Old 03-09-2005, 11:18 AM   #9
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debvid HB User
Re: So depressed

Julie

I understand your concern about adding more meds completely. I felt the same way. My decision was for it to make Bonnie's life better, not the school's. She has started thinking she is stupid. She says she is not smart anymore. She has always been a straight A student. Also we started it to help control the bad decisions. I had also heard it could lower the thresh hold. So far, it seems to be helping Bonnie somewhat and hasn't caused any seizures. Bonnie says her friends tell her all the time she is bi-polar, and she does act like it. Is it the meds or E? Who knows.

I have been arguing with Bonnie before and she had a S, not a GM but a small one. That seems to effect her a lot. Makes me feel real bad.

I can understand not wanting to take any chances while he is not stable. I believe Bonnie was going into status epilepticus when they took her off her meds for the veeg a year ago, they had to give her med through iv to stop them. It is scary. The only times she has had GM's was when we were taking her off of trileptal.

Bonnie did not take her med last night. I didn't find this out until this morning. I usually give it to her myself, I told her to take it. I later checked to make sure she did, I guess i looked in the wrong day's spot, because it was empty. Well, now I will be worried, she hasn't missed a dose in a while.

I pray that Patrick will get them under control. Take care of yourself. Cry as much as you need to. I cry almost every time I come to this board. My heart goes out to everyone here. God Bless

Debbie

 
Old 03-14-2005, 09:31 AM   #10
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buliem HB User
Re: So depressed

Debbie,
Thanks again. Sorry I didn't respond sooner but I was out of town. I'm sure the stims really help Bonnie. I just don't feel I can risk it with Pat right now and the only reason I would is to please the school. I can deal at home with his lack of focus even though it is difficult sometimes.

Thanks for listening. We all do our best. I hope Bonnie made it through her day okay.

Julie

 
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