Advice Please

[Cesbrown]

He is still doing normal teenage stuff. He is a snare drummer in our high school band which is very well known. He plays in the games every Friday night, goes to over iChat competitions and is even leaving in 3 weeks for a week long trip to play in a major thanksgiving day parade. The band is so wonderful. They have a out 12 nurses that travel with them and they have put one on his bus.
Music is an interest but I don't think he wanted that for a career...we are checking out other options.

 

[Chaz1]

Cesbrown,

My Son now 27 was diagnosed when he was 23. For 1st year plus, if I mentioned the word epilepsy you could see true anger. Suddenly all one takes for granted has changed and for your Son, his dream career has been taken away

It is very important to get seizures under control, because if not controlled, they can change and become more frequent or violent in nature.

Keeping a dairy of all seizures will help you find potential triggers and talk to doctors; I still go to all my Son’s appointments and I still keep track of all seizures, helps so much when we look back. The E meds are heavy going, keep very close eye on him to see if you notice any changes and if you do, write it down and tell the doc.

Excellent diet and nutrition is critical. Maybe a good idea if at all possible, have all his vitamin and mineral levels checked. My Son takes quite a lot of supplements, all researched and introduced by us. Safe alternatives in conjunction with meds though no cure, can help and give hope.

My Son is in both therapy and bio-feedback (brain training). Therapy has been a saving grace; he can let out all his frustrations.

I have read up probably hundreds of thousands of pages on net and books and some so I can at least try to better understand E and how he feels. Your Son is young; it may be a long road ahead before he can really accept all this I have found that by doing lots of research we always have hope in the back pocket to lift his spirits.

Now we can and do talk about it openly. He is doing bachelor’s degree in 5 years instead of 4 and is in his final year. He has learnt that if he is not feeling 100%, to pull back a little…but it took time to get there and yes he still hates E with a passion.

 

[reidflys]

Hey Cesbrown,
I'm sorry your son is going through this, and I'm sorry for you as the mum as well.
It's difficult for everyone. I feel like when you first get E. you think you can fix it yourself.
That was why I didn't use to take my meds.
Even if your son can't drive, he can still use a segway, or in tennessee you can drive
a 49cc moped or scooter with E.
I'm dressing as a drum major for halloween, I hope your son has fun in the parade.

 

[Cesbrown]

I am very confused about all that I am finding online. How can the doctor make this diagnosis after 1 seizure? Does the 3hz spike on the EEG make it epilepsy? Dr. Krause of Johns Hopkins did a study and said 54% are misdiagnosed. I just want him to get the best care and to make sure the doctors are doing there jobs (besides sending me 5 bills from 5 different radiologists whose supposedly read all his results)!

 

[chop456]

Cesbrown,
Welcome to CWE! I am also a mother to a teen diagnosed with epilepsy. Paige (14 years) was diagnosed based on EEG results. She was strictly having morning myoclonics. The EEG and her descriptions showed "classic" signs of juvenile myoclonic epilpesy. So here we are 8 months later on 250mg of Lamictal XR and following the recommendations as best as possible: lots of sleep, reduce stress, meds every day, etc. We still do not have 100% control of the myoclonics. Paige has not had a tonic-clonic but we know there is a very high probability that she will. Last week she did break down and we had a good cry. She has been pretty strong thru this all - but I am glad she had a good cry. I would love for her to see a counselor and she is against it. I am hoping in time, she will be ready.

I wish I had better advice for you as a mom going thru this, too. It can be hard to reason with a teen! Paige is living her life and moving forward. She is also in in band - she plays the tuba. She is carrying a full honors load at school. Sings in the school choir and runs cross country and track. Her sport has a year-round practice schedule so every day is busy. This will take some time and adjustment. Heck - even after 8 months I know I am still adjusting. Take care and again, welcome to CWE!

 

[Nakamova]

Hi Cesbrown --

Sometimes the EEG finding is "classic" as chop456 mentions, and the epilepsy diagnosis is considered very sure -- even after just one seizure. That was my experience. But if you don't feel confident in your son's diagnosis, get in touch with his neurologist and ask more questions about how the EEG was interpreted, and how closely the results correlate with an epilepsy diagnosis.

Even if the EEG seems definitive, that doesn't necessarily predict the course of any one individual's epilepsy. In my case, the neurologist said that I was welcome to try going off of meds after a 6 month stint. I jumped at the opportunity and tapered off the meds, but ended up having another seizure within a month of being med-free.

You and your son may want to discuss the option of seeing how he does without meds. If you decide to do so, make sure you're clear about the risks and benefits.

 

[chop456]

Cesbrown-
Now that I read what Nakamova suggests - it is interesting - I never asked for the neurologist to explain the EEG results to us. We just went with what they said. Hmm... I would be interested in hearing what the results actually mean. My daughter's "epilepsy syndrome" as they call it - has classic EEG readings and morning symptoms that are the tell tale sign of JME.

Keep us posted.