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  #1  
Old 06-15-2012, 11:50 PM
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14 year old daughter just diagnosed with JME


My daughter has had two tonic/clonic seizures since Monday of this week...she also had a seizure this afternoon where she didn't exactly lose consciousness but she jerked uncontrolled and seemed strangely happy/confused. Here is my biggest concern...the neurologist put her on clobazam by itself as a plan for the long term. I didn't know a thing going into the appt today and am completely overwhelmed but I don't see a single post about how wonderful this drug is when used exclusively and long term. Should I ask for a different neurologist's second opinion? I definitely don't want her to become addicted!
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Old 06-16-2012, 12:07 AM
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welcome rcwalker


Don't worry about the clobazam. Everyone is different & it could be the one that works for your daughter.

All anti-epileptic drugs have possible side-effects but that doesn't mean that everyone gets them. Do be aware of them & watch for them then give them time. It's very common for them to subside once the body adjusts.

I was recently on clobazam for a couple of months. As with all benzodiazepenes there is the chance of addiction but when it didn't help my seizures I stopped it & felt no signs of withdrawal.

Did the pharmacist give you any literature on the drug when you got it? If not I suggest you ask for some, they usually have the most accurate information and should tell you what side-effects to watch for & which might be dangerous & which aren't.
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Last edited by epileric; 06-16-2012 at 12:11 AM.
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Old 06-16-2012, 12:21 AM
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Hello and welcome to CWE! You have come to a wonderful place of information and support. I feel so blessed to have found CWE!

My 14 year old daughter was diagnosed with juvenile myoclonic epilepsy in February. She is currently taking 200 mg of Lamictal XR. I am not familiar with Clobazam but I am sure there are CWE members who know about this anti-epileptic drug. Have you asked about the long term effects of the medicine? Also, how is this medicine for child bearing (I know your daughter is only 14, but making sure she is responding well to a "female friendly" anti-epileptic drug now, may decrease her need to change meds once she becomes ready to start a family)?

I have been walking this path for 5 months and am continually researching, reading and logging on to CWE to see how I can best support my daughter. It still seems surreal. Please feel free to e-mail me if you ever need to talk from the "mom" perspective!

Best of luck to you and your daughter.
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Old 06-16-2012, 11:02 AM
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Smile Hello and Welcome


My 16 year old daughter had her first T/C seizure at school on May 1. Since then, she has had 2 additional T/C seizures at school and two lesser seizures at home that caused her to lose her memory. Her seizures have been every 2 weeks since the keppra. She had her dosage upped after Monday's seizure.

She has been on Keppra for a month. All of these medications differ in effectiveness from person to person, as do the side effects. This is a difficult time for you.

Right now our difficulty is that friends have been excluding her. I guess they are afraid of her seizing again and don't want the responsibility.

Adjusting to a new normal is the goal. The hard part is finding the new normal. There are many knowledgeable and helpful people that will help you on this journey.

Good luck to you and your daughter.

Tom
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Old 06-16-2012, 11:52 AM
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Originally Posted by DadofTwins View Post:
Her seizures have been every 2 weeks since the keppra. She had her dosage upped after Monday's seizure.


Right now our difficulty is that friends have been excluding her. I guess they are afraid of her seizing again and don't want the responsibility.
Tom, it is interesting that you say every two weeks. You may be aware of this, but I thought I'd throw it out anyway. Every two weeks there are female hormones at work.

First, ovulation, hormones change to force the ovary to mature and drop an egg into the falopian tube for fertiliztion (lots of hormones at work to complete this task).

Second, menstruation, exactly two weeks after the egg is released, if there is no fertilization, the body releases hormones again that cause the menses (or period).

Then exactly two weeks later, ovulation again (as long as her periods are normal meaning every 28 to 30 days).

Just interesting. You might look into charting her periods on her journal. Knowing how involved you already are, I wouldn't be surprised if you aren't already doing this and know all of this info
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Old 06-16-2012, 12:08 PM
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You all are excellent parents, and your daughters are lucky to have you. How scary for them and you. I'm sorry to hear that their friends treat them differently. However, its not surprising. I bet it scared their friends to see this happen at school. You might find a little success in talking to them about E and explaining it in detail so they know what to do if it happens again, that your daughters are still the same, that the meds may cause side effects and they can be of use if they help you by pointing out changes in behavior, or how to get medical care if something happens. Sometimes feeling useful with the knowledge needed to react helps solve their own fears. I also think that they may wonder if they can catch E. You know, they just may need some education and training so they don't feel so afraid and unsure. (I used this philosophy with a lot of the daddies in labor and delivery that were so scared to death from lack of knowledge that they just wanted to sit in the corner and not be involved with the delivery of their babies, and it worked most of the time.)

Just heartbreaking to hear these poor girls are facing such big changes in their lives. Its been extremely hard for me and I'm an adult. Thank you for being such good parents. It may not mean much, but I used to see lots of family dynamics in my line of business (labor and delivery RN). The families that stuck together as you all are, were so much more successful in life. Hang in there. I'm sure it won't be an easy journey for you all with side effects, and E in general. But I've read a lot of posts on here from parents and its inspiring. Helps me feel better and not so sorry for myself. You all are heros in my book.
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Old 06-16-2012, 12:11 PM
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Epileric, I truly appreciate your thoughts and knowledge....I agree with you and would be willing to try and see for awhile but what is really bothering me is that I don't see any commentary on the internet from *anyone* who said that clobazam was ultimately helpful (other than very short term for like two weeks or so) but I have seen a lot of negatives Our neurologist pushed the drug like it was a wonder drug with absolutely no/very rare side effects and what "I would put my own child on" kind of argument. I was so overwhelmed that I didn't even think or know to ask about more details. He was extremely black and white about it....that clobazam was *the* way to go. Do you know of people that have done well on this drug by itself? Especially over the long term and without addiction?
Thanks so much for commenting...I am sure everyone here knows what a lifeline this is!
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Old 06-16-2012, 12:19 PM
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Chop456, I would truly love to talk more and will send a private email...I wonder if our daughters (and Tom's daughter?) would enjoy the friendship of emailing each other or being friends on FB? I truly think my daughter would benefit from some support of someone else going through the same thing. My main question here is (since it might benefit someone else) how is your daughter doing on the Lamictal XR? I am definitely in research mode and I agree with you wholeheartedly that it would be best if we can find a med that is safe for her to take when she eventually starts a family. Thank you for reaching out!
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  #9  
Old 06-16-2012, 12:19 PM
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Originally Posted by rcwalker View Post:
Epileric, I truly appreciate your thoughts and knowledge....I agree with you and would be willing to try and see for awhile but what is really bothering me is that I don't see any commentary on the internet from *anyone* who said that clobazam was ultimately helpful (other than very short term for like two weeks or so) but I have seen a lot of negatives
That makes good sense to me because if it does work then we just tend to go on with life because we can. We also don't feel a need to vent to others when things go well. It's when we can't that we have time & our emotions about it are stronger that we're more likely to post on the net what we think.

Originally Posted by rcwalker View Post:
Our neurologist pushed the drug like it was a wonder drug with absolutely no/very rare side effects and what "I would put my own child on" kind of argument. I was so overwhelmed that I didn't even think or know to ask about more details. He was extremely black and white about it....that clobazam was *the* way to go. Do you know of people that have done well on this drug by itself? Especially over the long term and without addiction?
Thanks so much for commenting...I am sure everyone here knows what a lifeline this is!
I don't really believe in any one magical drug, herb or supplement. I have more comfort in the actual statistics of how well something works. The literature I got from the pharmacist used statistics to explain how people react to clobazam. I guess I shouldn't have thrown it out.
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Old 06-16-2012, 12:38 PM
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Julie, your kindness and empathy exudes from your words and from your picture too! Thanks for your compassion....very appreciated from a mom on the edge.
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Old 06-16-2012, 12:44 PM
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Epileric, good point! Why come onto a forum saying how wonderful you are! LOL Our prescription did not come with any stats like that....I wonder if there might be a website that might have that info? Of course, it wouldn't be American because it is not yet FDA approved for that purpose yet.
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Old 06-16-2012, 12:48 PM
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OOps, Epileric, I read my post again and I wanted to clarify before I was offending people....I meant to say that it would be pointless to post on a forum about "feeling" well ie no seizures etc...harder for me to make my words make sense when I am stressed, sorry!
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Old 06-16-2012, 01:00 PM
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Thanks, I loved being an RN and miss it so

But life is a journey and I'm on a new one now.

As far as the medications go, from my research (limmited) it seems they all have side effects, and one of those side effects is seizure control. Everyone reacts differently to them and epileric has a very good point....

"Most people who post are unhappy and looking for answers.... most who are doing well, aren't posting...."

So keep that in mind. Your daughter needs help. You got help. Read the insert that comes with the medication. If your daughter is experiencing side effects she can't live with, or side effects that are scary, call the MD right away. Mommy instincts are the strongest instincts I've ever seen at work. Watch her closely (without smothering her . Document everything. This drug may work for her. It may not. If not, you will have the information needed if you write things down to share with the MD.

Its not worth worrying about to the point that you are in what my boyfriends calls analysis paralysis (he he he which I suffer from). It takes these meds a few weeks to get into the system and up and running. Most of the side effects will tapper off, from what I hear, after a 20 to 30 days. You are doing all you can do for her. As far as I can see, none of them are fabulous, except they do prevent seizures most of the time. That is a blessing. If she gets under control, then she will be able to move on with life. One thing for sure... each doctors perspective is different! And we have to live with that... grrr!

I wish I knew the name of the mom on here who has a large thread. She has some great info. I bet epileric knows her and can forward the stream to you.

And friending other teens with her same issues is exactly what you should do. Maybe not on a public forum like facebook. They would more likely be able to share their true fears and issues in a more private setting, and then use facebook for fun. ??? But you're the mom and you know her best for these types of decisions.
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Old 06-16-2012, 01:04 PM
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Thumbs up Great Idea!


Originally Posted by rcwalker View Post:
Chop456, I would truly love to talk more and will send a private email...I wonder if our daughters (and Tom's daughter?) would enjoy the friendship of emailing each other or being friends on FB? I truly think my daughter would benefit from some support of someone else going through the same thing. My main question here is (since it might benefit someone else) how is your daughter doing on the Lamictal XR? I am definitely in research mode and I agree with you wholeheartedly that it would be best if we can find a med that is safe for her to take when she eventually starts a family. Thank you for reaching out!


I will discuss it with my girl. I know she is on another E forum. It may be more comfortable there than on facebook, which is really Public.

Thanks,

Tom
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Old 06-16-2012, 01:08 PM
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Hum, almost illegal for a pharmacy to NOT send the medication insert home with the medication. You sure you don't have it there? Also, no worries, just look it up on the internet. Make sure you use the medication and the medication manufactures name when looking it up. If all else fails, go back to the pharmacy and ask for a copy. They have to... have to... provide it to you.

The side effects should be about the same regardless of its use, but for E who knows. And are you saying that the FDA has not approved this medicine for epilepsy? And your doctor prescribed it to a teenager? I would be in an uproar if that were the case. Not saying it won't actually work. Just not practicing the best medicine in my eyes. But again, I don't know that much about all the E drugs, so I don't wan to talk out of place. It could potentially be the best one for your daughter. Only time will tell.
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Old 06-16-2012, 01:17 PM
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That moms name on here is RobinN. I hope you can search for her.
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Old 06-16-2012, 01:19 PM
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Originally Posted by rcwalker View Post:
OOps, Epileric, I read my post again and I wanted to clarify before I was offending people....I meant to say that it would be pointless to post on a forum about "feeling" well ie no seizures etc...harder for me to make my words make sense when I am stressed, sorry!
LOL, I knew what you meant.

I think IOU an apology. I had to go to the supermarket that my pharmacist was in so I stopped by & asked for the Clobozam (Frisium) printout and it didn't have the stats on it. I know my neurologist also gave me a different printout as well so it must have been on his that I saw them.

I know Julie is right that it is illegal to not give out the printout when starting a new drug, at least in Canada and it would make sense the same would apply in the US. Were you given one by either the neurologist or pharmacist? If not, I'd gladly share any info you want re. usage, side-effects, precautions interactions etc.
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Old 06-16-2012, 01:30 PM
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Here are a couple of studies on Clobozam

Quote :
Summary: Purpose: To compare the effectiveness of mono-therapy clobazam (CLB) to carbamazepine (CBZ) and phenytoin (PHT) in children with epilepsy.

Methods: Children aged 2–16 years with newly diagnosed epilepsy or previous failure of one drug (for poor efficacy or side effects) were assigned to one of two study arms and then randomized–CLB versus CBZ or CLB versus PHT. Eligible children had partial epilepsies or only generalized tonic-clonic seizures. After a drug initiation protocol, monotherapy treatment mimicked the usual routines used by Canadian child neurologists. Blinding used a “double dummy” technique with blinded medication serum levels (6–point scale). Intention to treat analysis using survival curves assessed the primary end-point–length of retention on the initial medication during the year after randomization.

Results: Fifteen centers entered 235 patients: 159 randomized to CLB versus CBZ and 76 to CLB versus PHT. Altogether, in all study arms, 119 received CLB, 78 CBZ, and 38 PHT. Overall, 56% continued to receive the original medication for l year with no difference between CLB and standard therapy (CBZ and PHT). Seizure control was equivalent for all three medications, as were side effects. PHT and CBZ induced more biologic side effects, such as rash, while CLB induced slightly more behavioral effects. Tolerance developed in 7.5% of patients receiving CLB, 4.2% with CBZ and 6.7% with PHT.

Conclusions: CLB should be considered as “first line” monotherapy along with CBZ and PHT for all partial and selected generalized childhood epilepsies.
http://onlinelibrary.wiley.com/doi/1...444.x/abstract

Quote :
Summary: Clobazam (CLB) is a structurally unique benzodiazepine (BZD) that has anticonvulsant activity in all types of refractory seizures. The main drawback to CLB, as to other BZDs, is the occurrence of tolerance. To date, there has been no way to predict which patients will develop tolerance. We compared clinical features and treatment variables between two groups of patients whose seizures were initially well controlled with CLB: patients with a sustained response and patients who developed tolerance. We retrospectively identified a group of 50 very good responders from among 173 consecutive patients with uncontrolled epilepsy treated with CLB. Very good responders were defined as patients with >75% reduction in seizures after the addition of CLB who continued CLB treatment for at least 1 month. At a mean follow-up of 37.5 ± 12.8 months, 25 patients continued to respond and 25 developed tolerance (mean follow-up 17.0 ± 15.7 months).Tolerance was defined as a relapse to a level <50% of pre-CLB seizure frequency after an initial very good response for a minimum period of 1 month, despite constant CLB dose and, when available, serum levels. There was no change in concomitant medication. Significant differences were noted between the two groups. The sustained response group had a shorter duration of epilepsy (mean 16.5 vs.24.5 years, p = 0.015), a greater proportion of individuals with a known etiology for their epilepsy (48 vs.16%, p = 0.006), and higher CLB levels (0.50 vs.0.22 μM, p = 0.017), but no significant difference in N-desmethyl-CLB levels. Certain factors apparently may influence the likelihood of developing tolerance to the antiepileptic effects of clobazam.
http://onlinelibrary.wiley.com/doi/1...617.x/abstract

And here's one on Benzodiazepines
http://lenus.ie/hse/handle/10147/119391
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Old 06-16-2012, 02:30 PM
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Can I just say, I really love the forum members! I have really learned a lot, even if it is questions other people ask.

Dad, I am sorry to read your daughters friends are jerks. You would think kids would have more compassion and empathy for their friends.

RC I hope you find some leads to follow, making sure you daughter is getting the best care possible. I was 21 when I had my first "known" seizure and for whatever reason (I know I was 21, but having some support from my mom would have been nice), my mom backed away. Seizures really, scared her. Luckily, my now husband has stood by me.
I wish I had thought to look for message boards a lot sooner than I did
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Old 06-16-2012, 02:49 PM
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Your poor mom. She probably feels bad she didn't help more. Some people are really freightened by all of this. Its just a lake of education and an inbred thing that we have to be perfect. I'm glad for your hubby and CWE as well.
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