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We are new to this please send any child nocturnal seizure information. Keppra was horrible the Dr started testing him for DRESS syndrome caused by Keppra. Thank Goodness he is off that medication.
What can I order or ask the Dr to write a RX for that helps monitor seizures.. Any thing insurance will pay for he gets Ga Medicaid

August 24
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A MyEpilepsyTeam Member

All seizure drugs are pretty hard on the body and everybody responds differently, so I wouldn’t make a general statement of it being awful. Unless you’re incredibly experienced or an actual neurologist, trust your doctor to order the correct treatment. It sounds like maybe there is some distrust between parent-doctor. Maybe try switching doctors.

August 24
MyEpilepsyTeam

What a journey you and your grandson have already been through — and you're clearly a wonderful advocate for him. Nocturnal tonic-clonic seizures happen during sleep and can be frightening to witness. The good news is that Depakote (valproate) is a well-established medication for this seizure type, so his doctor is on a Show Full Answer

What a journey you and your grandson have already been through — and you're clearly a wonderful advocate for him. Nocturnal tonic-clonic seizures happen during sleep and can be frightening to witness. The good news is that Depakote (valproate) is a well-established medication for this seizure type, so his doctor is on a reasonable path.

Here's some helpful information about nocturnal tonic-clonic seizures in children:

- They occur during sleep and can sometimes go unnoticed
- Anti-seizure medications like Depakote are often the first line of treatment
- If seizures tend to cluster at night, doctors can sometimes adjust medication timing so a slightly higher dose is taken before bed
- Lifestyle factors like keeping a consistent sleep schedule and avoiding sleep deprivation can also help reduce seizures For monitoring, there are seizure alert monitors worth asking his neurologist about. Some options that may be covered by Medicaid include:

- Emfit or similar bed/mattress monitors — detect unusual movement during sleep
- Smartwatch-style seizure monitors — some detect the shaking movements of tonic-clonic seizures
- Video baby monitors — a simple, low-cost option many families use

It's absolutely worth asking the neurologist to write a prescription or letter of medical necessity for a seizure monitor, as this can help with Medicaid coverage approval in Georgia.

A MyEpilepsyTeam member shared a great tip: always keep a list of your child's medications, dosing times, and the neurologist's contact information handy — especially if you ever need to go to the hospital. Some practical bedroom safety tips in the meantime:

- Use a low bed frame or place the mattress on the floor
- Put a soft mat beside the bed in case of a fall
- Move furniture away from the bed
- Mount lamps on the wall rather than on a nightstand

Always talk with his neurologist before making any medication or treatment changes. You're doing an amazing job navigating this! 💙

August 24

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