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 “refractory” epilepsy. Second, several drugs are commonly used with our children, some used more rarely, some that have traditionally been considered “alternative” but are now entering the mainstream (though not with all neurologists), and importantly some that are contra-indicated, meaning they can make things worse not better, from our children.
Also, it has been our experience that drugs that work for one child sometimes have a paradoxical effect, meaning they do the opposite of what they are supposed to do and make things worse, in others. For this reason, we believe that our children must ultimately fall into some subcategories of the condition that we don’t yet understand.
It is sometimes the case that a drug might work for a while, usually a few days, and then the seizures return. Our parents call this the “honeymoon phase”. We tell you this so that you aren’t overly traumatized if/when this happens. This entire journey can be quite a roller coaster, so knowing ahead of time what the possibilities maybe will help us to avoid some of the emotional highs and lows of the process.
It is also said that once three drugs are tried the likelihood of another drug working is small. While this may be true statistically our parents have sometimes reported success after trial of many pharmaceutical options. One family after 17 different pharmaceuticals. Every individual is unique. Below is a list of the various drugs used and a link to further information about them. Note also those that are contraindicated. It is important to know these because the hospital may use them in an emergency situation and you can avoid a bad spiral. Generally, the drugs are listed by their generic name with their brand name in parentheses. Also, note that across countries they may be called something different.
Lastly, we must mention and caution against the overuse of pharmaceuticals including the benzodiazepine class of drugs that may be good for emergencies but should not be used as a maintenance drug. It is not uncommon for a doctor to have the child on 3 or more pharmaceuticals. If a pharmaceutical is not working it is best for it to be removed instead of layering on more drugs that make it very complicated to know what is working, what is not, and what may be aggravating. There is also the potential of drug interactions when the medications can interfere with each other and not work properly or cause undesirable side effects. You can use this website to check interactions and side effects 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.