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Epidiolex
A MyEpilepsyTeam Member asked a question 💭

Does someone can tell me is this medication anti-Seizure is good ? i need to know cause my daughter is taking lamotrigine and she has still having absent seizures which is scary to me because i have to work and leave her alone at home with 15 years old, her Primary care doctor doesn’t want to help me to filling up for any FLMA or any help and she knows my daughter needs. plus i have no family im by myself with my daughter, no help

posted July 3, 2022
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A MyEpilepsyTeam Member

Before the Doctor prescribed Epidiolex for me, I had only read that it helped children. Later, they found it helped people like myself. My seizures had not been controlled by anything else, really.

Leslie

posted July 6, 2022
A MyEpilepsyTeam Member

The best person to answer that question is your daughter. Have HER keep a seizure diary----write down each and every seizure (even the simple partial ones). She will then be able to tell her neurologist if she is having more or less seizures than before taking that new medication.
When I was younger, I had an amazing neurologist, but his specialty was working with children. Once I hit 18, he told me to find a new neuro. My parents found one for me, but I didn't trust him. The very first thing that he did was put me on a new medication. It actually caused me to have seizures. My parents didn't believe me until I showed them my notebook. It turned out that he was getting paid to put his patients on this medication. Doctors get paid to do this and then they forge the paperwork so that it looks like you signed it. I AM NOT JOKING!!!
Get your daughter a different neurologist ASAP. I know that you are a single mother and that you work full time, so have your mother or a sister/sister-in-law or even an aunt or uncle take her to the appointment with the new neuro. Have whoever takes her sit in the appointment with your daughter. This may sound crazy, but my mother sat in on all of my neurologist appointments until I was in my late 30's. If you have a friend who is an EMT, then have that person take your daughter to the appointment. This is the absolutely best advice that I can give you.

posted July 4, 2022
A MyEpilepsyTeam Member

I wish you could tell you one medicine fits all, but if your daughter can communicate with you if it is having good or bad side effects, this is important. You might want to do research with your provider if there is any kind of stay at home care for your daughter.. I do believe in safety first, if she has to be at home, she needs to be in bed.. where she can call you. If you are not happy with your doctor of happy with the outcome of this medicine.. you need to find a better doctor.. neurologist, epileptologist.. they can get a team of doctors to find solutions for your daughter. Good luck moving forward!

posted July 4, 2022
A MyEpilepsyTeam Member

It is not easy to know whether or not, a specific medication works well or not.

Everyone one reacts differently to AED ( Anti Epileptic Drug )medications . One person mAy have great results with a Particular brand . Another person on the same brand , may not be having good results.

Then there are the side effects that comes with the medication. But not everyone reacts to the side effect the same, either. Some may experience, horrible side effects. Some may not notice much of the sides or they are minor and doesn’t bother them.

Then the next question is , What you can or can not handle. Maybe the medication is working great, but the side effects are bad and vice a versa . Are you still willing to stay with the drug or try to convince the Dr. To change to a different medication.

posted July 3, 2022
A MyEpilepsyTeam Member

I know that Florida has a program called “Charlotte’s Web” for Children. Medical Marijuana for Children

posted July 5, 2022
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