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Valproic acid (anti-seizure meds)



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amother
OP


 

Post Sun, Jan 03 2021, 5:18 am
DD has been on depalept (valproic acid) since April. Her latest few blood tests show her ALT (liver test) numbers keep going up. The med is known to potentially cause liver damage . The neurologist keeps shrugging off our concerns. Her GP is concerned.
Should we push the neurologist for a med change (with GP's help)?
Look for a new neurologist?
I'm in Israel and it took a lot of work and effort by the local kuppah secretary and GP to find a neurologist in the first place
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Elfrida




 
 
    
 

Post Sun, Jan 03 2021, 5:25 am
Are the numbers going up slowly within an acceptable range, or are they shooting off the charts?
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amother
OP


 

Post Sun, Jan 03 2021, 5:29 am
Elfrida wrote:
Are the numbers going up slowly within an acceptable range, or are they shooting off the charts?


From May (first blood test after starting meds) to November (next bloodwork) it went from 16u/I to 60
Neurologist said to check again after a month which we did last week and it's now 85.
GP says real damage is in the 300 range but that these numbers are a concerning trend. Obviosuly, we want to address the problem way before it gets that high
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amother
Aubergine


 

Post Sun, Jan 03 2021, 5:47 am
amother [ OP ] wrote:
From May (first blood test after starting meds) to November (next bloodwork) it went from 16u/I to 60
Neurologist said to check again after a month which we did last week and it's now 85.
GP says real damage is in the 300 range but that these numbers are a concerning trend. Obviosuly, we want to address the problem way before it gets that high

Send to pniyot hatzibur of your kupa demanding a new neurologist or a refund for going private.

If your daughter is on valproic acid for epilepsy you should know that the neurologist probably doesn't want to switch medications, since when it comes to side effects valproic acid is the safest and has the least side effects. All the other medications are stuff you really don't want to touch if you don't have to. Obviously if your DD is not reacting well to the valproic acid then you might not have a choice, I just want to explain why the neurologist might be reluctant to make the switch.

Where are you located?
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amother
OP


 

Post Sun, Jan 03 2021, 6:12 am
amother [ Aubergine ] wrote:
Send to pniyot hatzibur of your kupa demanding a new neurologist or a refund for going private.

If your daughter is on valproic acid for epilepsy you should know that the neurologist probably doesn't want to switch medications, since when it comes to side effects valproic acid is the safest and has the least side effects. All the other medications are stuff you really don't want to touch if you don't have to. Obviously if your DD is not reacting well to the valproic acid then you might not have a choice, I just want to explain why the neurologist might be reluctant to make the switch.

Where are you located?

thank for explaining. I didn't know the other options had worse effects. She's almost 15 and the doctor already planned to try weaning her off at 16. so maybe another year isn't so bad?
we're in TM area
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amother
Aubergine


 

Post Sun, Jan 03 2021, 6:50 am
amother [ OP ] wrote:
thank for explaining. I didn't know the other options had worse effects. She's almost 15 and the doctor already planned to try weaning her off at 16. so maybe another year isn't so bad?
we're in TM area

She started in April because of epilepsy? Usually they won't wean off until a year or two after the last episode. If I were you I would worry and do blood tests every 4-8 weeks, and watch the numbers, only switching if they started climbing too high. But you need to be able to have a discussion with your neurologist and if the neurologist won't listen to your concerns then you need a new neurologist.
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amother
OP


 

Post Sun, Jan 03 2021, 7:07 am
amother [ Aubergine ] wrote:
She started in April because of epilepsy? Usually they won't wean off until a year or two after the last episode. If I were you I would worry and do blood tests every 4-8 weeks, and watch the numbers, only switching if they started climbing too high. But you need to be able to have a discussion with your neurologist and if the neurologist won't listen to your concerns then you need a new neurologist.


(that was supposed to say Y-M area)

She had a seizure right after Purim and then another about 2 weeks later. We called MDA and they took us to cheder miyun. the on call doc consulted with a neurologist and started her on the meds since it was the second episode.
We then found a regular neurologist, did an EEG and an MRI and have kept on with the medication.
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amother
Sapphire


 

Post Wed, Feb 14 2024, 4:56 pm
OP, I'd like to know about the switch-over process. Did your DD manage to switch over to a new medication while remaining seizure free?
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amother
Scarlet


 

Post Wed, Feb 14 2024, 5:15 pm
amother Aubergine wrote:
Send to pniyot hatzibur of your kupa demanding a new neurologist or a refund for going private.

If your daughter is on valproic acid for epilepsy you should know that the neurologist probably doesn't want to switch medications, since when it comes to side effects valproic acid is the safest and has the least side effects. All the other medications are stuff you really don't want to touch if you don't have to. Obviously if your DD is not reacting well to the valproic acid then you might not have a choice, I just want to explain why the neurologist might be reluctant to make the switch.

Where are you located?

Valproic acid is safer then Keppra? This is news to me. Edited to add: preliminary research shows that indeed medications like Keppra and Lamictal are considered safer and have less side effects then older meds like valproic acid
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amother
OP


 

Post Mon, Feb 19 2024, 5:53 pm
amother Sapphire wrote:
OP, I'd like to know about the switch-over process. Did your DD manage to switch over to a new medication while remaining seizure free?


It actually got really complicated. DD basically stopped taking it on her own and was completely fine for about two years. The neurologist discharged her and said she was fine since she hadn't been taking the meds for so long without any problems. Maybe a week after the official discharge, she had a seizure again (first in close to 3 years).
Doc put her on Keppra, had another seizure, doubled the Keppra, another seizure, added in some valproic acid again, still had a seizure.
We're in the process of switching to lamictal now since she's almost 18, wants to be able to drive, and is presumably going to be on meds long term. So right now, she's actually taking Keppra, valproic acid, AND we're slowing building up the lamictal dose, expecting to wean her from the first 2 once the lamictal is at the appropriate dosage
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