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.
Sodium Valproate (ie Epilim, Episenta, Epival)
Levetiracetam (ie Keppra, Keppra XR, Roweepra, and Spritam)
Phenobarbital (Solfoton, Luminal, Alepsal)
Topiramate (Topamax, Trokendi, Qudexy)
Immunological and Steroid Based Treatments
Contra-Indicated (DO NOT USE With Doose diagnosis)
*Phenytoin (Dilantin, Phenytek, Epanutin)
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.