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My daughters EMU stay has revealed that she has severe cerebral dysfunction. Very slow background on the EEG with constant seizure activity.

A MyEpilepsyTeam Member asked a question 💭
Fountain Inn, SC

Every blood draw since 2022 has shown that zorontin levels are much too high but I only give her what she is prescribed. Could this toxicity explain her cognitive decline and communication skills?

March 1
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A MyEpilepsyTeam Member

It a mixture between the seizures and the medication’s ( usually from side effects ) . Both of those have their own part in your kids cognitive decline

March 2 (edited)
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member , I’m sorry your daughter is having a rough time. Have you discussed the blood work with her doctor? I’m 47 & took Zarontin probably when I was around her age, & I probably also took the Mysoline then as well. Doctors sometimes have to adjust medications if the blood work isn’t normal or if the patient has a reaction to the side effects. For example, I have been on Depakote probably since my teens & had been on the same dosage for all those years & then in December 2018 I started having some twitching, trouble breathing & heart racing & ER claimed I was just dehydrated. I don’t want to go back to that hospital. As months progressed, awful shaking started in my arms along with other little symptoms. Turned out that my Depakote blood level was at 135 & normal is between 50 to 100 & so my dosage had to be adjusted & the shaking eventually stopped. When I began seeing my current Neurologist in November 2019, after a 3 to 5 day in hospital EEG, she took me off of my Trileptal & put me on Vimpat & one time after a seizure she increased my Vimpat & that made my fingers shake a little. Later on she found a different dosage that’s working. But let her doctor know about any side effects or concerns that you’re aware of. If you feel the need, get a second opinion from another doctor. Be aware of long term side effects. I’ve been on Depakote since my teens & around 2015 I was told that long term use of it could possibly cause Osteoporosis & a bone density test was done that showed that I have Osteopenia in my left hip. I know it’s hard to avoid those long term use causes, but that’s just an FYI. I pray things get better for you & your daughter. 🤗💜🙏🤗 Your friend in Texas, Becky

March 2
MyEpilepsyTeam

Could high Zarontin (ethosuximide) levels explain your daughter's cognitive decline and communication difficulties?

Yes, medication toxicity could potentially contribute to cognitive and communication problems. When anti-seizure medication levels are consistently too high, they can cause side effects that affect thinking Show Full Answer

Could high Zarontin (ethosuximide) levels explain your daughter's cognitive decline and communication difficulties?

Yes, medication toxicity could potentially contribute to cognitive and communication problems. When anti-seizure medication levels are consistently too high, they can cause side effects that affect thinking, learning, and overall brain function.

However, it's important to understand that multiple factors may be contributing to your daughter's challenges:

Possible contributors to cognitive decline:
- Constant seizure activity itself can damage the brain and impair development
- Abnormal brain activity seen on EEG (even between seizures) can harm how the brain grows and works
- Medication toxicity from high Zarontin levels
- The combination of all these factors together

Why levels might be high despite correct dosing:
- Your daughter's body may metabolize the medication more slowly than average
- Kidney or liver function may affect how the drug is processed
- Drug interactions with other medications
- Changes in body weight or growth

Critical next steps:

This requires immediate discussion with your daughter's neurologist. They may need to adjust her dosage, even though you're giving what's prescribed. The goal is finding the right balance where seizures are controlled without toxic medication levels.

Don't stop or change medications without medical guidance, but do advocate strongly for dosage adjustment given the consistently high levels.

March 1

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