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I guess this is our life now...

I guess this is our life now...

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by: Ally Active Indicator LED Icon 2 OP 
~ 9 years ago   Jun 17, '14 9:19pm  
My son has had another seizure today. This time I checked on him in his room and he had already seized and was in the passed out stage. He threw up his dinner and I was again terrified. I called his Dr immediately and we started him on seizure meds tonight. I don't know how to tell if they are working. I can just make sure he doesn't have any side effects and pray for the best. I feel so helpless and can't understand why this is happening. I'm just so sad and at a complete loss. Please pray for our family and especially my son. It's his 22nd birthday tomorrow too. 4951
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BooBear Active Indicator LED Icon 16
~ 9 years ago   Jun 17, '14 9:28pm  
So sorry. I know that is terrifying.
 
As far as knowing if the meds are working..The only way to know is if he has no more. Seizure meds are really like roulette. 100 different drugs and 1000 of different combinations all with horrifying side effects.
 
If you don't mind me asking, or you can pm if you choose, what did they start him on? 4951
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calliecat Active Indicator LED Icon 10
~ 9 years ago   Jun 17, '14 9:31pm  
I am sorry that your son is having seizures!  I pray that his new meds will work with no side effects! 4951
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Ally Active Indicator LED Icon 2 OP 
~ 9 years ago   Jun 17, '14 9:35pm  
If you don't mind me asking, or you can pm if you choose, what did they start him on?
 
@BooBear: It's called zomisamine. One pill to start then in a week 2 pills.
4951
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landlady Active Indicator LED Icon 2
~ 9 years ago   Jun 17, '14 9:49pm  
Thoughts & prayers are with you & your son. Nothing is worse than watching your child struggle no matter how old they are. 4951
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BooBear Active Indicator LED Icon 16
~ 9 years ago   Jun 17, '14 9:51pm  

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>> If you don't mind me asking, or you can pm if you choose, what did they start him on?
 
@BooBear: It's called zomisamine. One pill to start then in a week 2 pills.
 
@Ally:
DD has taken that before. The biggest issue was her not wanting to eat and headaches. She has taken 14 different meds since she was 3. The worst, in our experience, was depakote. Taken with lamictal, it was effective but she gained about 40 lbs in a year on that. She now takes 3000mg of Levetiracetam(keppra) and 200mg of lamictal daily and has for the last few years with no seizures.
 
4951
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BooBear Active Indicator LED Icon 16
~ 9 years ago   Jun 17, '14 9:53pm  

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>> If you don't mind me asking, or you can pm if you choose, what did they start him on?
 
@BooBear: It's called zomisamine. One pill to start then in a week 2 pills.
 
@Ally: don't be surprised if they, if he tolerates it well enough, don't raise his dose to 600mg maybe a little more.
 
4951
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Ally Active Indicator LED Icon 2 OP 
~ 9 years ago   Jun 17, '14 9:56pm  

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>> If you don't mind me asking, or you can pm if you choose, what did they start him on?
 
@BooBear: It's called zomisamine. One pill to start then in a week 2 pills.
 
@Ally:
DD has taken that before. The biggest issue was her not wanting to eat and headaches. She has taken 14 different meds since she was 3. The worst, in our experience, was depakote. Taken with lamictal, it was effective but she gained about 40 lbs in a year on that. She now takes 3000mg of Levetiracetam(keppra) and 200mg of lamictal daily and has for the last few years with no seizures.
 
 
@BooBear: I'm just worried I may not know if he has side effects. He can't tell me if he has a headache or if he's nauseous.
4951
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BooBear Active Indicator LED Icon 16
~ 9 years ago   Jun 17, '14 10:04pm  

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>> If you don't mind me asking, or you can pm if you choose, what did they start him on?
 
@BooBear: It's called zomisamine. One pill to start then in a week 2 pills.
 
@Ally:
DD has taken that before. The biggest issue was her not wanting to eat and headaches. She has taken 14 different meds since she was 3. The worst, in our experience, was depakote. Taken with lamictal, it was effective but she gained about 40 lbs in a year on that. She now takes 3000mg of Levetiracetam(keppra) and 200mg of lamictal daily and has for the last few years with no seizures.
 

@BooBear: I'm just worried I may not know if he has side effects. He can't tell me if he has a headache or if he's nauseous.
 
@Ally: you will notice if he loses his appetite. Instead of trying to force him to eat or worrying yourself, get the ensure shakes. He will at least get some nutritional benefits without a lot of effort. Honestly, until his body fully adjusts to his final dosage, he will probably sleep alot. That will help if he does get a headach or nausea. Serious life threatening side effects really are rare and obvious.
that being said, I still watch my daughter for the rash I was warned so often about. It has never mmaterialized.
 
Most side effects happen at the beginning of a new therapy, changing dosages and tapering.
 
4951
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Ally Active Indicator LED Icon 2 OP 
~ 9 years ago   Jun 17, '14 10:30pm  

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>>
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>> If you don't mind me asking, or you can pm if you choose, what did they start him on?
 
@BooBear: It's called zomisamine. One pill to start then in a week 2 pills.
 
@Ally:
DD has taken that before. The biggest issue was her not wanting to eat and headaches. She has taken 14 different meds since she was 3. The worst, in our experience, was depakote. Taken with lamictal, it was effective but she gained about 40 lbs in a year on that. She now takes 3000mg of Levetiracetam(keppra) and 200mg of lamictal daily and has for the last few years with no seizures.
 

@BooBear: I'm just worried I may not know if he has side effects. He can't tell me if he has a headache or if he's nauseous.
 
@Ally: you will notice if he loses his appetite. Instead of trying to force him to eat or worrying yourself, get the ensure shakes. He will at least get some nutritional benefits without a lot of effort. Honestly, until his body fully adjusts to his final dosage, he will probably sleep alot. That will help if he does get a headach or nausea. Serious life threatening side effects really are rare and obvious.
that being said, I still watch my daughter for the rash I was warned so often about. It has never mmaterialized.
 
Most side effects happen at the beginning of a new therapy, changing dosages and tapering.
 
 
@BooBear: Thanks for your insight about the shakes. I will definitely look into them if he starts to lose his appetite. He's so thin already, he can't afford to lose any weight. I don't even know if he will make it to school tomorrow. The last time this happened, he couldn't walk for three days. I'd really like to know what God's plan is in all of this. Maybe he doesn't want me to sleep ever again.
4951
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fcabanski Active Indicator LED Icon 16
~ 9 years ago   Jun 18, '14 12:09am  
When you pray, you need only pray once.  Ask God for his help.  He doesn't deny his children.If you're not sure what's happening, ask the doctor or find a group that includes people with children who have similar conditions.  Knowing what to expect, and knowing what to do, really helps. 4951
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Okiedokie Active Indicator LED Icon 11
~ 9 years ago   Jun 18, '14 7:42am  
I'm just worried I may not know if he has side effects. He can't tell me if he has a headache or if he's nauseous.
 
@Ally: My dd couldn't tell us either. After time, I could tell when she had a headache though, she would hit her head with her hand as if she was trying to "knock" the pain out.  She would also hold her head more. I still have a hard time telling if she is nauseous.
4951
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silly123 Active Indicator LED Icon 13
~ 9 years ago   Jun 18, '14 7:48am  
Removed By Request 4951
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topcat Active Indicator LED Icon 12
~ 9 years ago   Jun 18, '14 7:49am  
@Ally I will keep you and your son in my prayers. My heart goes out to you. 4951
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Love2Run Active Indicator LED Icon 9
~ 9 years ago   Jun 18, '14 7:53am  
I'm so sorry you are having to deal with this! I can't even imagine what it must be like. I hope the doctors are able to find the right meds & dosage soon! And that you get some sleep. We can deal with just about anything if we can sleep. 4951
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GoldenGirl Active Indicator LED Icon 15
~ 9 years ago   Jun 18, '14 8:04am  
@Ally  I am so sorry, you and your son will be in my prayers....  Keep seeing doctors till you find one you feel is taking you serious and is genuine about helping you. 4951
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