Living with epilepsy - Introduce yourself & meet others

@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

I hope the doctors are able to help your son! We are blessed Dj's aren't daily...1 a week at most but they are violent and leave her exhausted. It's incredibly hard to watch your child go through such traumatic sickness and not to have the answers, I just keep digging and looking hoping to find something to help her. We have insurance but the medical debt is overwhelming, but blessed to have something that does help a little.
I sure hope that you can find answers and help for your son!! Thank you for responding, it's comforting to having people that care. Much love
Dj's mom

Not at all! I read every response! We are NOT having surgery she was just sick and tired and her neuro made it SOUND like a quick fix to her. I know it takes a toll on her little body, and has to frustrate her not to be able to get her learners permit like the rest of the kids, to have to take so much medication every day, to me going in her room countless times during the nite to check on her. I'm just reaching out hoping to stumble onto something, anything to give her positive outlook. I want her to be optimistic about her future! I do not want any sort of surgery preformed on her unless there is no other option. Diabetes does run in my family so I've always be strict about sugary sweets, a lot more lenient towards chips though. We grow a garden each year as to save $ and provide organicly grown foods with no chemicals. We eat what we can and I freeze the rest for thruout the winter. That's not to say she never has any of the things you've mentioned but I do try to monitor the things she eats and drinks and keep it as healthy and fresh as possible. We all really do appreciate any feedback we get and it's only to benefit her. We want her to see all options, not just what her neuro said in our visit last week. Thank you Jake for your honest feedback, i take all information right back to her! Showing her what others have to say/think that way she does see that she does have a choice, voice, and is being heard. Thank you!
Dj's mom

@djsmom
Hello again,
I just thought of something else a man on Connect started his daughter on the drug EPIDIOLEX which is a drug derived from marijuana without any THC. Not sure how it’s working although the research showed it worked quite well. It is VERY EXPENSIVE about $30,000 a year. Financial aid is available.
https://www.epidiolex.com/engage-patient-support/assistance
Jake

Hi, I just wanted to say that my 40-year-old son, who has Lennox-Gesault Syndrome, is about to start on Epilodex. Apparently in Illinois, Blue Cross/Blue Shield insurance will cover part of the cost. He has been on Medical Marijuana for several years (in the form of an oral oil). It has helped a little, but has not completely stopped the seizures or improved his activities of daily living skills. What it has done is improve his ability to bear weight so that I can transfer him from car to wheelchair and back, so that he can attend his day program. So that definitely improves his quality of life. The cost for that--about $500.00/month--is not covered by insurance. We have a wonderful neurologist who is willing to do all the paperwork for us to try these treatments. She is semi-retired, but still sees a few long-time patients. We are very grateful to her.

@pamelastewart5
Hello again,
You have probably read the thread about epidiolex but in case you haven’t @mmas is giving it to his 6 year old daughter. It hasn’t been helpful the last time I heard from him but now she should be on the maximum dose. Hope he updates us soon. I thought I read Epidiolex was about 25% effective but I can’t remember if that was for Tonic Clonic Seizures or it’s overall effectiveness. I’ll try and get some accurate info about that. Does anyone know? Atonic or Drop seizures associated with Lennox–Gastaut syndrome appear to be nearly 42% effective provided its used as an add on medication in adults.
Not quite the wonder drug they had thought it would be.
Best wishes,
Jake

Lisa,

Yes, using meds now.

Someone asked about Lamictal a few conversations back so I'll add to it:
Limictal XR (Extended Release) 500mg once 6 AM. I've been on for approx 16 years with good control of general nocturnal. Some other seizures(?), are two other, by 3 neurologists over 30 years, still present. First lasts 30 to 90 seconds. Experience is not being able to speak without slurring words, cannot read, or understand what anyone may be saying. I am aware it is taking place the entire time and safe to wash knives, glass dishes. The second is 75% same as the first but, cannot make eye contact with anyone, duration 3-10 minutes with a 30 min residual confusion. However, dizzy enough to force sitting down within 30 seconds, not safe to stand, mild headache after with urge to go to sleep. All neurologists have said they are not willing to call last 2 epilepsy, more likely mild concussion related, which there was 1-2 years prior to first nocturnal gm in my twenties. Both always a 30 second warning.

Lamictal,,, does it control the gm? No gms in the last 14 years, awake or sleep. The other 2, I may not see for 3 months, and then will come in series of 5 to 8, over 2 weeks, then gone again. I was offered Lamictal 200mg per day, in the manufacturers test group before available for use for 1 year. No seizures of any during that time. GMs never returned since start of Lamictal. The others gradually came back around month 14-16 from start. I tried lamictal look alike with no success. About 5% of users must be brand only.

Lamictal and Lamictal XR are very expensive, 30k ish per year if out of pocket. I get it through GSK for approx $35 per month. Is Lamictal only though GSK, not sure. GSK, (well? who really) dropped coverage of non XR 2 yrs ago. It's a lengthy process (documents and neurologists participation) to get it but, of course worth it. GSK 866-728-4368. If on just Lamictal (not XR) check with neurologist for a change to XR but... XR is usually done to smooth/lengthen the stomachs digestion/absorption if one thinks the drug blood level is too up-down with the non-XR.

Rick

Yes, my daughter has been on epidiolex for about 4 months. Haven’t had too much success with it though. We may increase a little more. But...when she did go on it there was a program where we would only pay $25 until out of pocket deductible was met which we met pretty quickly because my daughter has lots of therapy. Maybe he will qualify for that? It was through insurance Caremark Cvs.

I feel your pain! My daughter has been through 2 surgeries and still has seizures. It’s just very frustrating but did see a big difference in quality of life after surgeries despite physical set backs. It was a hard decision but glad we did it while she was young. Good luck and I’m here if you need to vent! I hate seizures! So unpredictable!

@mmas
Thank you for the update and information. I’m sure it will help others.
Jake