Pharmaceuticals

Our children are typically first treated with pharmaceuticals.  This often starts before the diagnosis of Doose syndrome, and there are a few important things to know about them.  First, some affected respond to pharmaceutical interventions and never need anything else.  We know the least about these cases because they tend not to end up in our support forums.  We are working to try and learn more about these individuals through our research partners, but for now, what we know is most children are resistant to medications working.  This is referred to as “https://www.drugs.com/

Always keep in mind the balance of quality of life and seizure control. If the seizures are under control but you are dealing with horrific side effects, your loved one is not present due to fog, or other undesirable effects; only you as their caregiver can know if a pharmaceutical is right for them. 

Most Common

Valproic Acid

(ie https://www.mayoclinic.org/drugs-supplements/valproic-acid-oral-route/description/drg-20072931

Sodium Valproate (ie Epilim, Episenta, Epival)

https://www.mayoclinic.org/drugs-supplements/valproate-sodium-intravenous-route/description/drg-20072601

Clobazam

(ie https://www.mayoclinic.org/drugs-supplements/clobazam-oral-route/description/drg-20075333

Ethosuximide (Zarontin)

https://www.mayoclinic.org/drugs-supplements/ethosuximide-oral-route/description/drg-20072587

Felbamate (Felbatol)

https://www.mayoclinic.org/drugs-supplements/felbamate-oral-route/description/drg-20063811

Lamotrigine (Lamictal)

https://www.mayoclinic.org/search/search-results?q=lamotrigine

Levetiracetam (ie Keppra, Keppra XR, Roweepra, and Spritam)

https://www.mayoclinic.org/drugs-supplements/levetiracetam-oral-route/description/drg-20068010

Clonazepam (Klonopin)

https://www.mayoclinic.org/drugs-supplements/clonazepam-oral-route/description/drg-20072102

Also Used

Phenobarbital (Solfoton, Luminal, Alepsal)

https://www.webmd.com/drugs/2/drug-8689/phenobarbital-oral/details

Rufinamide (Banzel)

https://www.mayoclinic.org/drugs-supplements/rufinamide-oral-route/description/drg-20072403

Perampanel (Fycompa)

https://www.mayoclinic.org/drugs-supplements/perampanel-oral-route/description/drg-20075877

Zonisamide (Zonegran)

https://www.mayoclinic.org/drugs-supplements/zonisamide-oral-route/description/drg-20066787

Lacosamide (Vimpat)

https://www.mayoclinic.org/drugs-supplements/lacosamide-oral-route/description/drg-20072409

Topiramate (Topamax, Trokendi, Qudexy)

https://www.mayoclinic.org/drugs-supplements/topiramate-oral-route/description/drg-20067047

Epidiolex

https://www.mayoclinic.org/drugs-supplements/cannabidiol-oral-route/description/drg-20443842

Immunological and Steroid  Based Treatments

ACTH (Corticotropin) 
https://www.mayoclinic.org/drugs-supplements/midazolam-oral-route/precautions/drg-20072182

Prednisolone
https://www.mayoclinic.org/drugs-supplements/prednisone-oral-route/proper-use/drg-20075269

IVIG
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1809480/#:~:text=Intravenous%20immunoglobulin%20(IVIG)%20is%20a,%2C%20given%20approximately%203%2Dweekly.

Contra-Indicated (DO NOT USE With Doose diagnosis) 

*Phenytoin (Dilantin, Phenytek, Epanutin)
https://www.mayoclinic.org/drugs-supplements/phenytoin-oral-route/description/drg-20072875

*Oxcarbazepine (Trileptal)
https://www.mayoclinic.org/drugs-supplements/oxcarbazepine-oral-route/precautions/drg-20067615

*Vigabatrin (Sabril)
https://www.mayoclinic.org/drugs-supplements/vigabatrin-oral-route/description/drg-20066675

*Carbamazepine (Tegretol)
https://www.mayoclinic.org/drugs-supplements/carbamazepine-intravenous-route/precautions/drg-20310900

In an emergency

In an emergency, the following drugs are often administered.  Often parents will have a rescue medication that can be administered rectally during a seizure.  This is typically diazepam.  Emergency responders can monitor breathing and other issues that may result from administering more rescue medications, but parents should never administer more than their doctor prescribes of any emergency medication.  The general advice is that if the diazepam has not started working within 1 minute, it’s time to call an ambulance.  You may or may not have to initiate transport to a hospital because often before or during their arrival the seizure will begin to slow down.  However, if it does not they can administer additional drugs while monitoring breathing and oxygen as they transport to the hospital.  Once at the hospital more drastic interventions can occur if the child is still seizing.  This is the point at which you want to know the drugs contra-indicated for Doose syndrome because they are sometimes used in the ER by non-neurologist ER doctors.  Having this list written down to hand to the attending physician is important so they don’t inadvertently make things worse.  

diazepam (Valium®),
https://www.mayoclinic.org/drugs-supplements/diazepam-rectal-route/description/drg-20072190 

lorazepam (Ativan®),
https://www.mayoclinic.org/drugs-supplements/lorazepam-oral-route/before-using/drg-20072296

midazolam (Versed®)
https://www.mayoclinic.org/drugs-supplements/midazolam-oral-route/precautions/drg-20072182