Community Forum Archive
Duration to find an effective medicine?Fri, 05/22/2020 - 00:55
Topic: Parents & Caregivers
How long might it take to find an effective anti-seizure medicine for an infant? We're on our 2nd med, since baby's first seizure about 2 months ago. Is it possibly months, or possibly years? We don't know how many options there are to try and how long this process is. Our baby is still having seizures. FYI, we're in Vietnam and don't have opportunities for discussions with our doctor (doctors here have overwhelming numbers of patients!). Any shared experiences will be welcome!
Every person’s experience is
Submitted by Patriotrehab on Fri, 2020-05-22 - 21:42
Every person’s experience is different, but as ConnectHelp said, if the child is continuing to have seizures after trying two or more seizure medications at doses high enough and for long enough to see if they would work, it may be time to see a specialist or go to an epilepsy center, which is usually led by an epileptologist. The reason for this is because they have access to different kinds of testing and can offer recommendations for medications that are often more specialized for what they may find on the testing. I don’t know what all they have in Vietnam, so that may be a factor that limits you as you mentioned in your comment. I understand your concerns.The majority of people who have epilepsy will be able to have their seizures controlled with medication, but there are some of us who do not have a treatment option that works to control their seizures. However, even those of us who have what is called intractable or refractory epilepsy, the majority of us can still live normal, healthy, active, and relatively independent lives. I don’t know how many medications there are for infants, but it’s my understanding that there are a total of 28 different medications currently available for treating epilepsy in the United States and they are in the process of discovering more all the time. As the child gets older, the medication options also expand. (I know one of the medications that I am on, for example, is highly effective in treating patients with intractable epilepsy as well as a particular type of childhood onset epilepsy, but the person has to be at least two years old to be able to take it.) There are also devices and surgery options when medication fails that are effective for some people. I remember seeing your other post. You are a very good grandmother to be so attentive and asking such good questions. I encourage you to read as many of the articles as you can on this website. It’s how I came to be so informed about seizure types, first aid, and many other topics. As the child grows and becomes verbal, you can ask more questions about what they experience to check for other seizure types, etc. The Epilepsy Foundation also have a good resource for learning about each of the medications that are tried on the website.
Hi, Thank you for posting and
Submitted by Anonymous on Fri, 2020-05-22 - 10:06
Hi, Thank you for posting and we understand your concerns. Treatment and how the body may respond to certain medications varies for each individual. Generally, it may be time to get another opinion from an epilepsy specialist if your child is continuing to have seizures after trying two or more seizure medications, (at doses high enough and for long enough to see if they would work). Or If you all feel like your child is not getting the proper care or you all are not receiving the answers you need. https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/treatment-101-basics/if-first-medicine-doesnt-work .If you have not already you may want to consider having your child see an epileptologist (epilepsy specialist), who can provide more specialized care for epilepsy. For help finding a specialist near you and for additional resources in your country please visit: https://www.ilae.org/regions-and-countries/regions/ilae-asia-and-oceania/chapters . Additionally, you may want to consider keeping a journal or a diary to help keep track of your child’s seizures, medications, and other therapies. My Seizure Diary, can be used to organize health issues, manage medications, identify potential triggers, develop seizure response plans, and more, which can be share with the healthcare team: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary . It’s common for those who are in a caregiver role to feel overwhelmed. It’s important to remember that you are not alone, and that you’re taking care of yourself and making your health and overall well-being a priority. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf . It may also be helpful to connect with other parents who may have similar experiences, to ask questions, find & give support to each other, by visiting: https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/parents-helping-parents