#AsktheMayoMom about Pediatric Epilepsy

Hello @dawn_giacabazi @sarahv @erinorb @kelly8573 @andrearmay @ketomom @fritacca @jruza @sbruce @mikearons50 @grandma @krd94

I'd like you to invite to join Dr. Angela Mattke and Dr. Elaine Wirrell to talk about pediatric epilepsy. You can participate by asking questions; Click View & Reply to see the details.

You do not need a Facebook account to be able to watch the broadcast. You can watch it right here on this page on Connect.
Please let me know if you have any questions.

My son is will be 11 in February, he was diagnosed with epilepsy when he was 5. I don't know much about what type he has other than they are absent type. I have been to two different doctors and feel like I know nothing. From what I have read he has till maturity to correct the problem or his chances are he will have them for life. My main question is how do I find out exact what type he has and do I need to find another dr? My husband was seen at Mayo in Minnesota last year and we have thought about taking him there. I am just unsure what I need to do.

Early in the seizure journey with our daughter, we struggled to find answers, and just like you, in finding the right help. Here is what I would suggest: First, an epileptologist specializes in seizures. I would schedule a second opinion with one. We know that Dr. Elaine Wirrell at Mayo is one of the best and I would highly recommend her. If you do seek a second opinion, I would write down your questions/concerns and I would include the concern of seizures being life-long if not controlled now. I'm not sure that is accurate, but know there are several treatment options including dietary changes that can help with seizures. I hope this helps.

Hello @blath2000, Welcome to Connect. If you'd like to get a second opinion from experts at the Mayo Clinic, please call any of our 3 campuses, http://mayocl.in/1mtmR63. You will be offered an appointment within 48 hours. Be sure to mention the epileptologist specializes in seizures. They can help you and your son navigate the healthcare journey, answer your questions and guide you through a treatment plan.

@hermsenk asks:
Our 15yo son has epilepsy and has been on depakote for many years. He really struggles with school and making friends. We tried to bridge over to a different medication a few years ago but then started having seizures again. We have been seizure free for 1 yr. He also has a VNS for 3 years now. Wondering about suggestions. To make life easier for learning? We are on a lower than therapeutic dose already. Life is hard enough...

Our daughter graduated this year and we understand how difficult school can be if you have epilepsy. If the struggle in school is with academics, does your son have an IEP in place to help? There is also technology that might help, our daughter recently began using a smart pen for upcoming college classes. The pen records and helps with note taking. As far as friends, have you thought about getting him involved in an epilepsy group for teens? Sometimes meeting others going through the same helps. In regard to meds, has your son tried diet? Our daughter is on a version of the keto diet called the Low Glycemic Index Diet Treatment. It's easy for her to follow. Your son's doctor will need to prescribe the diet and a dietitian would guide you through it. Trust me, if we can do it, anyone can.

Hope this helps!

Has there been any research into essential oils and seizures, ie what to use, what to stay away from?

My son, who is almost 15 yrs old and has developmental disabilities, has had seizures since he was 2.5 years old. His seizures have gotten really bad since puberty hit 5 years ago and they keep changing. He has failed over 8 medications, and the ones that he is on now seem to be adding new types of seizures. My question is, how is it that a medication used to TREAT a certain type of seizure, causes them instead? He is on Trileptal 15ml twice a day and Onfi 2 ml am and 3 ml pm. He has been having sporadic subclinicial seizures and atypical absent seizures since starting Onfi.
Thanks!

Hi @clairesmom,

Welcome to Connect. I'm so sorry that you have to see your daughter go through this, but I'm glad you joined us. You will see that I have moved your discussion to this group titled, "Ask the Mayo Mom about Pediatric Epilepsy"
If you scroll up. you can watch and hear Mayo Clinic Dr. Mattke and Dr. Wirrell discuss pediatric and intractable epilepsy.
Here is a quick link to another Mayo Clinic webinar held last year, as well (Pediatric Epilepsy Treatment Options):
http://mayocl.in/2gpvuvH
I would also like to introduce you to @blath2000, @ketomom, @hermsenk, @inkdfrog, @krd94; I'm confident that they will provide more information that will help you help your daughter.

Although, not directly related to Glut 1 Deficiency Syndrome, I would encourage you to read about this research program at Mayo Clinic where one of the areas is glucose sensing: http://mayocl.in/2hjdq8g

@clairesmom, how have you managed her symptoms thus far? Has Claire's doctor suggested genetic counseling for the Glut1 DS?

Hello. Thank you. My daughter is a patient at Mayo Clinic. We travel 14 hours each way to go there every 3 months. I've done a lot of research and we have the keto diet pretty well down. We make our own recipes so our daughter can have the same meals we have (with some additional tweaks for her). We have had genetic testing and the gene mutation for Glut 1 was not found at that time. The keto diet changed our lives and, especially, our little girl's life. She is full of energy and most of her seizure activity has stopped. We had been to other hospitals in Denver and Salt Lake but nobody had any answers until we came to Mayo. We will never go anywhere else. Mayo is excellent in patient care, efficacy, and communication.