Mother of a teenager who just diagnosed with Seizure Disorder

@lyhay1973
Hello,
Epilepsy can be difficult to accept. I have had it for 55 years and at 15 or 16 when the seizures became more severe (usually daily) I had a breakdown. Believe me I know how hard acceptance can be but controlling the stress/anxiety can be detrimental in Epilepsy. Those problems may potentially cause the seizure threshold to be lowered causing more seizures. Many worry about when the next seizure will hit which is understandable shortly after being diagnosed but worry never helps and may lead to more problems.
Her defeated feeling, I believe, are normal at this point. She needs time to accept the diagnosis and sadly she may become a victim of the stigma associated with Epilepsy which makes things even worse. But Epilepsy is nothing to be embarrassed or ashamed about and I hope she and your family are able to talk openly and freely about it.
I totally agree with you about the bubble. That would do more harm than good in my opinion.
Research is showing that exercise and being physically fit may actually lessen the risk of seizures. That however is not to say her life won't be altered somewhat. One thing that should be avoided is taking a bath unless someone is with her. Last month a sports celebrity with Epilepsy died in the shower. His family believes it was a result of a seizure. It's much more rare to drown in a shower but quite a few have. Best to have a temperature control in the shower or knobs verses a handle and a drain system that can't be blocked. Many people are scalded when they had a seizure and fall against the handle.

Coping with E.
- Accept diagnosis.
- Don't be Ashamed or embarrassed.
- Take medication FAITHFULLY
- Control stress and anxiety.
- Plenty of quality sleep
- Keep a seizure diary

Her defeated feeling, I believe, are normal at this point. She needs time to accept the diagnosis and sadly she may become a victim of the stigma associated with Epilepsy which makes things even worse. But Epilepsy is nothing to be embarrassed or ashamed about and I hope she and your family are able to talk freely about it.
I totally agree with you about the bubble. That would do more harm than good in my opinion.

This tip isn't significant for all patients but a study from Stanford University showed seizure patients should use the same drug manufacturer and not switch from brand to generic and vs versa.
What type seizures does your daughter have? Did her EEG show any seizure activity?

This tip isn't significant for all patients but a study from Stanford University showed seizure patients should use the same drug manufacturer and not switch from brand to generic and vs versa. My Neurologist always prescribes extended release or brand named drugs unless patients insist on generic. My seizures stopped soon after I started taking the extended-release meds after 45 years. My seizures are very infrequent now compared to multiple seizures daily or near-daily.

What type seizures does your daughter have? Did her EEG show any seizure activity? Was her MRI clear.

She should not withdraw regardless of rejection or other potential problems that may arise.
Jake

First I'm NOT a doctor, but a computer programmer and I look at logical first.
Try googling CBD and seizures, From that, I would suggest, maybe let's try something else other than cbds and eliminate THCs (if she is getting this elsewhere) which everyone thinks is the cure all for our stressful lives. When did your brother start having seizures, same time he started to use CBDs?? Look at the inputs and see if they result in the output of seizures. Kind of like machine learning, but unfortunately we don't get to see every possible inputs. We can look at inputs outside of the normal people usage though. (Meaning do I "eat more cornflakes" more than normal than other people - where cornflakes filled in with all inputs of your daughters daily life, it doesn't even have to be through the digestive system, could be walk 3 miles around the manufacturing plant near the house everyday......)

At top of my Google Search "does CBD cause seizures" (of course you will fine equally that it also stopes seizures) but research what you can, and take everything you read with a grain of salt.

She needs to look back and see if she bumped up her CBD usage before her first seizure. Then did stress cause even more usage of CBDs due to diagnosis to cause the second.

Google Search "does CBD cause seizures" -- In a 2020 study, researchers found that patients taking a commercial CBD product had a 70 percent increase in seizures, whereas the group taking prescription CBD had a 39 percent reduction. A reason for this may be that the commercial CBD products had higher levels of THC, which can be a trigger for seizures" -- Strange looks like no matter uncontrolled usage or through RX it still increases chance of seizures.

Thank you Jake,

As far as the CBD we get a very good reputable company. If anything with the CBD she isn’t taking it constantly, both times she had her seizure, she didn’t take the CBD, was under a lot of stress with school, and wasn’t sleeping very well at all.

With her 1st seizure all of her test in the hospital came back normal EEG and MRI. It wasn’t until she had a 72hr EEG did they see two little abnormalities in the middle of one night.

My bother has never use CBD.

I understand the issue of using CBD, but with my daughter it has help greatly with her anxiety.
As the other person before you having her learn to manager her stress and anxiety I think is key to this issue with her.

This last one we all feel was due to stress, anxiety and extreme lack of sleep. She was stressed and having anxiety of coming back from a vacation with my mom, and trying to get ready for school on top of the Covid testing and buying books, and an issue with a class. The day she came home from her vacation she didn’t relax or give her body time to adjust to a 4 hr time difference. Didn’t sleep either went out with some friends, hurried up and packed stayed up all night then got up very early in the morning to do shopping and Covid testing back at her college campus.

We notice a big difference with her when she takes the CBD and it’s for the better. She never takes more then what she should, we are leaning towards the fact that she doesn’t take it constantly.

My daughter has been using CBD oils for years before her 1st seizure.

Hello Jake,

Thank you for all of info you gave me to process. Her MRI was cleared all normal, her blood work the same thing, her EEG in the hospital was cleared as normal. When we met with the Neurologist for the 1st time she ordered a 72hr EEG to be done at home. That test show some abnormal activity two times in the middle of one night and that’s all. Once that came back they started her on the Keppra 500mg twice a day.

Since leaving gymnastics she has been trying to find a way to be active at College, weight lifting and she just joined her college cheerleading team. She desperately missed the gymnastics. She trained for 20hrs a week and their conditioning would make us fall over lol.

The thing that is similar with the 1st one and 2nd one is the lack of sleep, stress and anxiety. She always takes her anti seizure medication, but she slacks on taking her CBD. When she does slack on that I notice more of the anxiety in her. She went on a 18 day vacation with my mom. And I got an ear full from her that I need to put my daughter in therapy and she has way too much anxiety. Now I agree she has a lot of anxiety, we have offered her to go to therapy she said not yet. My daughter is a lot like her dad thinks things should be instantly fixed lol.

My daughter admitted to me that she didn’t take the CBD on her vacation and the anxiety was through the roof being away from home that long was a 1st time for her. The changes with school and Covid. Coming home so close to having to go back to school and her not feeling ready or prepared.

So there was a lot going on same as with the 1st time. I just don’t know how to stress to her enough how important self care is for her. Sleep, eating as healthy as he can at school, taking her CBD every morning because it does help, but teacher her ways to manage the stress and anxiety I am up for any ideas for that.

Thank you

@lyhay1973, Hello!
What kind of epilepsy does your daughter have? Do you mind sharing? Does she have convulsions (generalized seizures) or focal seizures? I have identified myself much with your daughter, having similar triggers and symptoms.
Kind Regards, Santosha

Hello,

She has had convulsions seizures. I’m happy to meet you Santosha, I would like to learn how you have managed the triggers?

lyhay1973
Since research has shown CBD effective in controlling both anxiety and seizures, I wonder if Epidiolex, a pharmaceutical grade cannabidiol (CBD) extract would be even more beneficial. Last I heard it costs around $32,000 a year or about $.12 per mg but seems to be covered by nearly all insurance companies. Some members here participate in Greenwich’s Patient Assistance Program paying $5.00-$25.00 a month.
Take care,
Jake

Hi @lyhay1973

Thank you for your message and information.
My epilepsy has started when I was 12 years old, manifesting itself in a very mild way (my seizures are focal and not convulsive and happened around 3 times a year). Thus, I have lived with epilepsy (left temporal lobe) without knowing it until I was 48 years old when it got more severe. Though I and your daughter have similar symptoms, perhaps we do not have the same kind of epilepsy, as it seems she has primary generalized seizures. Seizures can start in one part of the brain (focal seizures) and spread throughout the brain (second generalized seizures) or happen in all brain (right and left hemisphere) at once (primary generalized seizure which is convulsive).
I agree very much with @jakedduck1 that accepting epilepsy is very important to cope with this disease. This has been quite a challenge for me in the 2 first years, as with the medication treatment I got much worse (I have medical resistant epilepsy), hitting me hard. I felt like I had to give up on my life (stopped working, driving, meeting people, and with many activities of my old routine). Not accepting my epilepsy was something that has caused me much anxiety and stress, one of my main triggers to seizures. Psychotherapy has been of great help in accepting my epilepsy!!!
I have never been a calm person since my childhood, but after my epilepsy got more severe, my anxiety has risen much, having concentration problems, memory problems, and sleeping issues. I have then started to practice yoga (hatha/traditional and nidra). Yoga nidra is a deep relaxation practice that helps me much to compensate for my bad nights of sleep (30 minutes of yoga nidra can represent up to 2 hours of deep sleep). Sleep is another seizure trigger I have. Hatha yoga and its philosophy has been helping me with many things, not only anxiety but also with dealing with my current challenges and my new way of life, living more the present than the future, among other things.
Knowing more about epilepsy, especially my type of epilepsy, is something that also has been positive in my recovery. The Epilepsy Foundation has been a great source of education for me. It has helped me to better understand and register my seizures, reading signs and it also has brought somehow a feeling of safety. Thanks to this education, I understood the importance of being treated by an epileptologist and not just a neurologist. This is very important in my opinion! I have experienced many differences between the treatment with a neurologist versus an epileptologist.
Joining groups such as the Epilepsy Group at Mayo Clinic Connect has been another thing that has helped me to cope with the challenges of epilepsy, not only in terms of information and education but especially in terms of a feeling of belonging. I have met several nice people here at Mayo Clinic Connect!
Regarding CBD. Since last year, I have started treatment with medical cannabis, after having tried 5 different AEDs (anti-epileptic drugs). First, I have been prescribed CBD with low THC and now I take just pure CBD. I still have seizures, but they have become much milder and do not finish with my day as they did before. My current doctor has changed to pure CBD by May this year. I see that with CBD with low THC I had fewer seizures, something I will discuss in my next appointment. Though I am not yet seizure-free, I am feeling much better and back to life. I also use a rescue spray of CBD and THC, which immediately interrupts my seizures.
Exercising has also been positive in my recovery process. Due to medication, I have lost balance and fallen, hurting one of my knees (I have also been a gymnast and had already issues with this knee before) and having walking difficulties for 1 year. I now practice Pilates and do some walking, feeling more disposed and with more energy.
I also totally agree with your and @jakedduck1 opinion about the bubble. Do not treat your daughter differently because of the diagnosis of epilepsy.
I hope your daughter will be soon copying better with her epilepsy. If you have any other questions, feel free. It is a great pleasure to help others with epilepsy!
Santosha

Hello Sabtosha,

I can not thank you enough with all the info you just shared with me. I almost want to cry…..you have given us some avenues to explore that we never knew about. Her and I will be talking about some of the activities you do to help with your stress and anxiety for sure. Thank you sooo much. I will definitely be in touch and keep you posted on how it’s going.

@santosha
You definitely belong and we couldn't get by without you.
you mentioned that CND helped.
I was wondering if you ever considered taking Epidiolex?
I was reading a research article that was saying using the entire plant instead of just a few extracts was more beneficial for seizure control. i’m curious to find out what the next marijuana pharmaceutical will be.
Take care of yourself,
Jake