Juvenile myoclonic epilepsy and Keppra

I am so sorry, this must be so scary! I have only my experience to share but I wonder if it may be of some help to your daughter.

I am now a 42 year old mother, and I have Celiac disease. My symptoms were all neurological at first, (my legs became paralyzed). Doctors could not figure out what had caused this and they did not test me for Celiac because I did not have the classic digestive issues. By the time I was diagnosed, just a little over a year ago, I had developed new symptoms of horrible muscle stiffness that had kept me in a wheel chair for almost two years. My humped/arched back and stiff, shuffling gait, moments of "gait freeze", which happens with Parkinsons, and terrible brain fog/stiffness, made me wonder if I was developing early-onset Parkinsons. Just recently I was clued into "glutamate excitotoxicity", which I found out through a strict elimination diet (including a trial possible trigger foods) to be the cause of these horrible symptoms. Within two weeks of giving up anything with high glutamate levels, I am now walking and running and feel twenty years younger.... My little girl has me practicing cart-wheels! Glory be to God!

Celiac disease has over 200 symptoms is a multisystem disorder that primarily attacks the small intestine... I have heard of people experiencing seizures before finding out they had Celiac. I wonder if it may be worth investigating?
Here is the Celiac panel to ask for-- some doctors limit only to the tTG but some people are diagnosed through the other tests and have next to normal tTGs (like my sister and niece who had lower positivity but enough to need an endoscopic biopsy of the small intestine to confirm Celiac):
1. Tissue Transglutaminase tTG-IgA
2. Total serum IgA
3. tTG-IgG
4. Deaminated Gliadin Peptide IgG
5. Endomysial Antibody

AND... Glutamate excitotoxicity happens with nearly all neurodegenerative disease (such as Parkinson's, MS etc) but studies are showing that glutamate is also found in excess in the brains of people with epilepsy among many other things like autism etc.

Glutamate is an amino acid, found in nearly all foods but particularly in slow cooked foods and sauces (tomato sauce, chili etc) turkey, canned and processed foods of any kind, food chemicals/flavor enhancers like MSG and hydrolyzed yeast extracts (artificial glutamates), also pesticides found of fruit and veggies, caffeine, even leftover food.

My diet right now is very, very limited and there is much debate about measurable glutamate levels so I am using a good journal and adding one new thing a week to see how I react. Eating fresh food, and appropriate portions is very important for me-- I am eating lots of sweet potatoes, romaine, a bit of chicken, beef, hard boiled eggs, some organic fruits etc. but am focusing on whole foods-- nothing that comes in a package. I don't think that everyone with glutamate sensitivity needs to necessarily go through their diet to the extent that I have but I am being very careful because my symptoms have been so debilitating. (To give you an idea, Parmesan cheese has about the highest amount that occurs naturally in a food, and after eating a half a block as a test during my initial elimination diet, my legs stiffened so badly I could not hardly move them at all--left me bedridden and with horrible brain fog for days-- this is how I discovered glutamate was my trigger.)
Anyway, Celiac Disease and glutamate may be things to look into. Elimination diets are very challenging, especially for kids... My daughter (who btw was also diagnosed with Celiac after my diagnosis, had for years had nerve issues/pain and her legs giving out on her, until she gave up gluten) is now eight years old and going through thyroid issues-- we are now going through dairy elimination with her. It's not easy, though there are many alternatives and lots of children/adults who are going through similar things. It is not easy, but we are not alone!

If you find that changes in diet are something that you feel you should explore... You are not alone! I hope that maybe this will be of some help to you and that you find answers and healing for your daughter quickly!

It is interesting to me that you feel like guanfacine is helping with mood. When my daughter was at Mayo for the med change, they added guanfacine as well but I didn't think to mention it because they said it was for PTSD. Perhaps that medication is also partly why she is doing so much better!

My almost 18 year old son had his first seizure March 24th of this year. He's your quintessential football player, never had any other medical issues and is a very active, healthy kid. Out of no where...BOOM. Now he can't drive, can't be left alone, and he is ANGRY. I'm not sure if it's the Keppra, or if his world has just been turned upside down and he's not coping well. But yes, totally not the same kid as he was before.

@kymill
Developing seizures for no known reason can be a very challenging experience. When I developed epilepsy at age 14, it took me about two years to totally accept my diagnosis and my new normal life. If the anger issues began after the Keppra perhaps the Keppra may be responsible for the anger, known as Keppra tage. Vitamin B-6 may help. I'd check with a doctor or pharmacist for appropriate dose.
Take care,
Jake

I'd say he is angry and likely experiencing depression as he's realized how much his life has changed, especially his social network. Most athletes have lots of friends and fun times because of their notoriety, and in professional sports, millions of $. Then within a few months, all is gone....even those who he might have thought were his friends. This happened to me 30 years ago, although not football related. It took me 15 years out of the 30 to get out of denial and realize it is what it is; no driving and all. I recommend that your family consider getting him to participate in Support groups, like we have here at MAYO, only for younger members. My best to your son and your family. Most of us have been there.

@kymill
I understand what your son is going though and like what @royanthony said"most of us have been there."
He may never have another seizure. If he does it sometimes takes awhile to get them under control. But the odds for control are about 70%. But he shouldn't be looking at it from the point of view that his life is over and get depressed.
Depression and negatively are harmful and can increase seizure activity and also affect his overall quality of life. Why give up playing football? There are numerous professional football players several in the NFL
You mention "he can't be left alone" why not? Often times parents are overyprotective of children with epilepsy. Think about how that makes us feel. We want to be just as independent as anyone else. Are you protecting your son or is it your fear of the seizure.
He needs to come to terms with this condition. That isn't easy but it is essential.
Yes, sometimes we get hurt falling because of a seizure but we can't stop living a life we want to be as normal as possible.
I used to frequently dislocate my shoulders during seizures, and ultimately had to have multiple surgeries. They have wanted to do bilateral artificial shoulder surgery on me for a long time, but I won't allow it. I've cracked my head open I can't tell you how many times. When I get to the ER for stitches or staples, they always greet me by name and say something like "not again." They often make light of it by joking around which I prefer. One of the the nurse once said "from now on you're going to have to bring your own staples."
It is seldom necessary for a seizure parient to go to a hospital because of a seizure. There are certain seizure conditions like Status Epilepticus which is a seizure or series of seizures that don't stop. This condition requires immediate medical intervention. Sometimes medication stops them, other times patients are put into an induced coma until the seizures stop.
I have this condition and have been in many induced comas but I have lived as normal life as possible for 59 years.
Take care,
Jake