Juvenile epilepsy

Tagging @tlb101175 @aproudrebel @erivas110818 @stauggroomer35 @dlydailyhope @cmmichaela @covidstinks2023 @ginopoore @arunhari @happyccl8 @september2018. From their experiences or general knowledge about medical conditions, these members may have some input and provide some support for you about your daughter's juvenile myoclonic epilepsy and the extreme moods she's experienced since taking levetiracetam (Keppra).

@sg325
Have you tried combination medication with Keppra? I read that several medications may be needed to treat all seizure types/symptoms.

Is your daughter able to minimize the triggers of her seizures? It is so important that she takes medication and minimizes triggers so she doesn’t have any accidents/injuries during/after a seizure. Bathing/swimming and anything where position can make it hard for your daughter to breathe during/after a seizure, supervision is so important to keep her safe.
https://www.epilepsy.com/what-is-epilepsy/syndromes/juvenile-myoclonic-epilepsy

She has only had two convulsive seizures and many morning myoclonic symptoms. I’m learning a lot as I go, but currently she just takes the keppra and vitamin b, two times a day. We are very mindful of her activities and triggers, which primarily seems to be tiredness.
I know it’s important to stop the seizures but her moods are so severe it ends up disrupting the whole household

@sg325
I can relate with moods affecting the entire family . My 15 year old son has ADHD, anxiety, OCD, etc. and his moods are intense at times and very stressful to me. He takes medication for ADHD and one of them helps to manage the intensities of his moods (guanfacine).

I’m sure hormone changes may have a role to play for your daughter and my son. I have a counselor for my son. Do you have one for your daughter? Have you considered working with a psychiatrist for antidepressants/antipsychotic medications that work for teens with epilepsy?

You may also want to check with a nutritionist/dietitian to see if any changes would be helpful that can reduce symptoms/triggers (foods/supplements, etc.). Do you know if your daughter is allergic to anything that could be a trigger for her? If so, you may want to consider testing.
https://www.epilepsy.com/complications-risks/moods-behavior

@adoptivemother @lisalucier
Hi, I am taking sodium valproate 200_ 0_300mg
Plus revotril(clonezepam) o.5mg 1-0-1

I am intolerant to levetrocitam.

I had my first seizure at 15 years of age and now I am 44. Currently managing with yoga / deep breathing / mindfulness. As soon as I get a small fits I breath slowly and concentrate on happyy thoughts .. the intensity and frequency of fits decreases and I go into deep sleep. I don't know how it's working..

My sister goes thru the mood swings. She is 60 now but unfortunately they do not know what causes her. She’s on medication which helps sometimes. Epilepsy is so hard to control when u don’t know the triggers. My sister used to have a bird that would tell her when one was about to start. She immediately would go lay down as to not fall. It’s also one of the reason now that she doesn’t have much furniture in her home. Do u guys have a pet? Sometimes a pet will help with the tiredness, irritability, etc. Also some like my sisters bird could give a heads up when one is about to start. I’m sorry you have to go thru this. I pray that you and your family find something that helps. 🙏❤️

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