Hi!
My name isPatricia and I have a little son that has intractable seizures. As you, I feel daily that I am not able to help him. He had surgery at Mayo in February 2017, but his spells didn’t end. Now he is taking Keppra and trileptal and the seizures are happening almost everyday. He needs another surgery... we are planning to go... but we are from Brazil and we don’t have any insurance, so it’s all paid by ourselves. We will have to go soon ... and I am really afraid of this new procedure.
He is not going to school, or playing anymore... everything is triggering the spells.
I hope your daughter be cured as my son.
With love
Patricia

@djsmom
Good morning,
Perhaps it’s time to seek out an Epileptologist and/or be referred by your doctor to an Epilepsy Center. Mayo Clinic’s E Center in Minn has been ranked as the best in the U.S. and is a level 4 Center. Although my own personal opinion is they may be a bit aggressive with Epilepsy Surgery. But I do believe it’s probably the best there is.

Have you ever considered the Epilepsy Diets? It may be advisable to discuss this with the Neurologist.
1 Ketogenic
2 Modified Atkins
3 Medium chain triglyceride
4 Low glycaemic index treatment

Here are some foods your daughter may want to avoid.
Besides MSG (I believe most processed foods contain MSG) & Aspartame, refined carbohydrate foods such as pizza, soft drinks, white bread, cakes, bagels, white rice, white pasta, mangos, raisins, bananas, mashed potatoes and dates,
chips. In other words, the good stuff. Try low glycemic-index foods like whole grains, brown rice, whole-wheat bread and pasta, legumes, yogurt and nuts. Low glycemic foods help keep your glucose from fluctuating as much. The brain is fueled primarily by glucose and requires a constant supply since glucose is not stored in the brain like it is in muscles. Actually carbohydrates are stored in muscles in the form of
glycogen and converted into glucose.

I am somewhat concerned about your daughters attitude regarding Epilepsy surgery. Although I would never have it done and perhaps I should have chanced it, after all 13,000+ seizures is a bit excessive and the time I spent in induced comas cumulatively was years. I don’t mean to be all doom and gloom about Epilepsy Surgery. After all there are many successful Epilepsy Surgeries performed. One person just recently posted her success story. The problem as I see it is those are the examples told to prospective patients while the negatives are downplayed if mentioned at all.
It amazes me at the incuriousness of many patients and parents. I truly don’t mean to sound judge-mental I am very concerned that people expect a quick, complete and permanent fix and although it does sometimes happen, I cannot speak to its permanence but it’s far from a guarantee and I’d very strongly recommend you visit every Epilepsy forum and check out people who have gone through it.
Doctors are not Gods, they are not performing miracles. Doctors are not infallible, accidents happen. Mistakes happen.
A study by Johns Hopkins estimates that more than 250,000 Americans die each year from medical errors. Medical errors are the third leading cause of death in the U.S.
Sorry, I guess I got a bit carried away.
Best of luck to you & yours,
Jake