need help

[brandiet1972]

Hello, my name is Brandie and my daughter was disgnosed with Epilepsy in 2008. She was 10 then and she is almost 12 now. I guess I just want some advice. She was first put on Keppra but later switched to Trileptal because she seemed aggressive on the Keppra. When she first started the Trileptal, things seemed fine. I have noticed things have been getting worse. Her behavior is awful, she is disruptive in class, she is back talking her teachers, and her family at home. She was seizure free for 8 months but in November, she had another Grand Mal in school and then had a Partial that night. She had another partial after Thanksgiving and told me that she thinks that she has had alot of those. Her Dr. just upped her dose and things are worse. The worst thing is, she is making threats of suicide. I have talked to her Dr. about this and he started her on Celexa. I have been doing alot of research and see that Trileptal can make you have suicidal thoughts and I am wondering why, if her Dr. knows this, he won't change her meds? He tells me that it is not the meds, that she has other issues. She does have ADHD but her pedicatrician feels that adding another med to the list will just make things worse. I am not sure what to do because now she is complaining of shortness of breath and has been pulling out her hair so bad that she has a small bald spot on her head. I realize that it is better to be seizure free but she cannot live her life this way, and I am worried that she will really end her life. What should I do? I am switching to the Epilepsy Group in MN but her appt isn't until May? Any info would be great!!! I am just so worried!!!

 

[skillefer]

Hi Brandie! Welcome to CWE. My advice is this, go back to the doctor and demand that he take your daughter of the Trileptal. Explain about the behavior, suicidal thoughts, and the shortness of breath and bald spot. It will take him tiame to wean your daughter off the trileptal, or he can send her to a hospital and pull her off the drug there while she stays there. Ask for a deifferent med. As for why your daughter got aggressive on Keppra, Keppra can cause what is known as "kepprage". Basically anger and aggressiveness. some people find that Vit. B6 helps to counter it. sounds as though neither Keppra or Trileptal was a good fit. She needs to be on a different med. If he won't do it, or even if he will, I'd start shopping for another doctor. The fact that you told him about the suicidal thoughts should have been enough to have him take her off the trileptal and put her on a different med.

 

[brandiet1972]

Thank you for answering so fast. I just saw the warning about suicidal thoughts when I was researching Trileptal the other day. I was shocked that he did not take it more seriously. He basically told me that the behavior issue is not from the meds. My daughter has never gotten in trouble in school until this year. I have had numerous emails and phone calls about her behavior. I know my daughter and this is not her. I don't care what he says. She is going to be seeing Dr. Frost at the Epilepsy Group in May but I need to get her off these drugs now. I called her Neurologist early this morning. If he doesn't do something, I will have to find someone in the mean time. The only thing is, we do not have a Pediatric Neurologist in my town so I am wondering if a regular Neuro would see her. I have to do something. Thanks for the advice.

 

[RobinN]

I agree... this sounds like the medication is doing quite a number on your daughter.
It certainly did to my daughter. I really thought these medications were going to be our saviour, but it turned our lives into a living HELL.

I can't believe that your Dr. would put a child that age on Celexa on top of the other medication. What it must be doing to that already sensitive brain. Unbelievable!

I am not saying that this is going to be your answer either, but what have you done on the nutrtional side of healing? Has anyone suggested how her diet might be possibly playing a huge role in her ADHD, her seizures, and her behavior?

You also have to weigh in the fact that she is in the middle of hormonal changes at her age, and blasting her body with all these chemicals is just another insult.

Sorry... but this just brought up a lot of memories of where we were a little over a year ago, and it wasn't pleasant.

 

[swimmy]

As Skllefer said, you need to take control of your daughter's health issues (obviously you know that, I'm just reiterrating). If you think the medications have something to do with the personality change, find a new neurologist.
That said, many (most? all?) AED's cause depression (they are central nervous system depressants, after all).

If this was me, and a third medication didn't help, I would consider pairing the AED with an anti-depressant. She could be sensitive to the medications in that area.

Best of luck to her (and you!).

Anita

 

[brandiet1972]

Yes my daughter got her first period at 10. At first I thought maybe that is why the seizures started in the first place, but again her Dr. said No. I wonder how he thinks he knows everything. All I know is that she is not the same person and I am not sure what to do. I am afraid all the time. I was thinking of looking into the nutritional side of things, any info you have would be great. I have 5 other children and we cannot live like this. I know she is a good girl but right now others can't see that. Thanks for the advice.

 

[brandiet1972]

She is already on Celexa and I think it is making things worse. Wow just got an email from the principal, she is already in trouble. I am thinking I should just take her out of school.

 

[RobinN]

Then she is going to believe that "she" is bad. I wouldn't just yet.
Let her know that the meds are doing something to her and that you are going to help her to work through it.
Tell the principal you are dealing with medication that is causing this, and you need flexibility and COMPASSION to find answers

 

[RobinN]

As for hormones as a possible cause.... I am afraid your doctor is clueless (our first few were too). Tell him he needs to look up Catamenial Seizures
Ten years old is very young, and her little body is going through a tremendous change.
Be careful if you wean off of the Celexa, as it is extremely powerful as the other ones are.
Go slower than even the doctors recommend.

Even Celexa, Paxil, Wellbutrin ... can also cause suicidal tendencies in young brains.
They did in my son. Helped him focus better, but on the wrong things. Evened out his temperament, but I would rather have his spirited self.

 

[brandiet1972]

Yeah they don't get it. They just think that I can control it. I am not sure what to do. I need some help.

 

[RobinN]

Take a deep breath.
You are doing what you can right now.
Take some time to gain knowledge. This will empower you when you talk to these people.
They no longer will be able to talk over your head.

 

[RobinN]

Just remember.... this is not your daughter trying to be BAD. It is a chemical imbalance.

 

[swimmy]

She is already on Celexa and I think it is making things worse. Wow just got an email from the principal, she is already in trouble. I am thinking I should just take her out of school.

There's nothing wrong with that. Perhaps she needs a break on many levels. We used to homeschool our kids, and there were families who homeschooled because their children had medical issues that the schools and/or kids had trouble dealing with.
Taking her out for a few months until you all can get a handle on the medication situation may be just what she needs. After things smooth out, she can go back, after a sit-down with the principal, and perhaps a 504.

 

[RobinN]

I homeschooled my daughter during middle school.
I just suggest that you take some time to really think about it. It is another stigma that she will carry, whether you like it or not. It should be done with a lot of thought put into it.
Not to say that it isn't a great thing to do, when necessary.

We used Laurel Springs which is an accredited program, and she could go right back into her classes at any time.

 

[misseschris]

Welcome to the site

I used Dilantin 4 times a day at 125mg all through my teen years along with a host of vitamins and a lot of prayer (gained a bit of weight and added an extra 2 pills around my mentrual cycle)...It kept the seizures under reasonable control. I know each person with epilepsy is different but know there is a treatment regimen for your daughter it's just a matter of trial and error. In the interim there are specific thoughts and feelings we'll have as epileptics your daughters age, meds and raging hormones are only adding to the intensity. Please stay on the backs of the neurologists as much as possible, we all pray that you guys find the right med/s with minimal side effects and soon.

Good Luck, God Bless!

 

[brandiet1972]

Thank you, all of you. Sorry it took me so long to get back to you. I was crying my eyes out!! The principal emails me, the lady from ADAPT calls, and then the nurse calls to say that my daughter is short of breath again (always happens in Math). It came all at the same time and I just pretty much had a breakdown. I am glad that I have people that can understand what I am going through. I mean Karlin was a little hyper before but we tried the meds and they didn't do much but make her an emotional wreck so we quit them. She has been pretty good otherwise. She is so shy and has such a hard time making friends, it just kills me all this stuff that she is going through. The teachers and principal say they understand but everytime something happens I get a phone call or an email like I am supposed to fix the problem. They don't get it, I don't know what to do. I am trying everything I can think of. We did an ILP in school, I am trying to get her weaned off the meds, she sees a therapist every two weeks, and I have found a new Dr. but we can't get in until May. Ugh...I hope I can stay strong for her.

 

[RobinN]

Yet IMO finding the cause of the symptoms at this age is far better than just throwing medication at it.
If it is hormonal then treat that. If it is a sugar imbalance, then treat that, if it is a liver overload, or a food allergy, then treat that. Going into the doctor bag and pulling out a drug, only covers up the cause for a while. It will rear it's ugly head again some day.

That is my opinion.
Using Neurofeedback to stabilize the brain, especially while it is in a growth spurt, helps in many ways. Cognitive function, emotional stability, and piece of mind knowing that you are not harming the body in any way.

 

[RobinN]

No need to be sorry Brandie
From my experience, it is not a good place to be if you let on that you don't know what to do. Be prepared for their questions, and tell them you are working with your doctors to find answers. Right now, your appt date is your answer.

Her emotional state could be triggering some of her symptoms. However, I also found that the different drugs that were tried on Rebecca caused different symptoms. Visual with one, shortness of breath almost like a seizure in her chest, extreme muscle pain, extreme memory loss... etc

You might consider finding a fantastic psychologist to help you through this difficult time. I found one for Rebecca and she became my life line as well. She kept tabs on both of us. We still see her weekly, and the social "stuff" that Rebecca has had to deal with at HS is worked through privately between the two of them. Just a thought.

 

[brandiet1972]

I think I just have to get over the emotional stuff and be stronger. I have just been so sad lately. I have to get over and get tuff. What do you think I should do when she gets in trouble? Sometimes it seems that she might be doing something that another student is doing, but she is the only one that gets into trouble. I am just sick of the whole thing, I am in HELL right now. I am so glad that I found this place, you guys can help me be stronger. I will NEVER stop fighting for what she needs.

 

[swimmy]

Brandie,
You should be so proud of yourself. You are doing everything possible to help your daughter--one day you will find a place where you can find peace with it all. It just may take some time.
I don't have a child with epilepsy, I just have my own experiences. I can, however, relate to you as a mother. I understand that your child is a piece of you, and helping her is what you do best. You are a very strong person. Keep doing what you're doing. Go with your gut instinct--you will know what is right for her.

Anita