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Teenagers With Epilepsy

Teenagers With Epilepsy

Hi All,

I was looking for some advice from teenage parents and kids on how parents can help their teenagers cope with epilepsy and the medicines - symptoms , help to build confidence that they are not defined by epilepsy !

Do you have trouble at school ? What are somethings parents can do to help kids ?

My son will soon be in high school and I worry about his future all the time. He is very hardworking, focused and tries to be positive but I know how much this hurts him… not being able to… read more

A MyEpilepsyTeam Member said:

Talk therapy might be beneficial. Just someone to process with. I was diagnosed with epilepsy as a teen and wished I would’ve been able to unpack the emotional toll/side of things

posted 3 months ago
A MyEpilepsyTeam Member said:

Ok. First, can you remind me of what specific seizures what he diagnosed to have?

Also, only through testing can the doctors determine if he is eligible for surgery (but brain surgery should be the last choice because regardless of the brain surgery it is even more dangerous than any other surgery though only slightly more than heart surgery because there are only one of them, and the liver has the ability to regenerate, thus a partial liver transplant can save a life. Besides, just like everything else with epilepsy any treatment and reaction to is judged on an individual basis because some medication, alternative treatment, surgery, VNS implant, etc. can be great for some and very bad or semi-successful for others.

You can search Q + A answers regarding those who have/are using CBD options, have had VNS implants, have had more invasive testing, have had brain surgeries and even had multiple brain surgeries, etc.
If you do not already know how, the path to Q + A on this site is simply clicking on this link: https://www.myepilepsyteam.com/questions

Articles in the Resources section might provide additional information about the variations of CBD than the details provided by the Epilepsy Foundation and the US National Library of Medicine. However, referring to the responses to Q + A questions on these subjects give you much more input from individuals who have/are using these options. This is a much more valuable resource beyond the facts provided by any of the reliable sources that explain the details, because this is the results from a bunch of people who have/do use this or have had he implants and surgeries.

If the neurologist tells you that your son is one (like me) that will not achieve a long-term seizure free state via medications, the choose the alternative treatments before the implants and the brain surgeries.

Another fact is that unless the MEG is just being used to confirm or provide more potentially detailed information on an origin site for the seizures in the brain, then it will be of limited use. My doctors were hoping that the MEG would tell them that the seizure that had the origin point in my right temporal lobe was a false positive when I was in EEG Long Term Monitoring, because all of the others were in the left temporal lobe. Since it did not, I am not a candidate for brain surgery. And with all of the brain damage to the memory section that I have already sustained because of rare things related to my epilepsy and past treatment, there is no way that I am letting them drill into my skull to get anywhere my brain. Regardless of how low the risk is that there statistics are indicating of more potential damage to my memory, I am not accepting any more.

posted 3 months ago
A MyEpilepsyTeam Member said:

It was nice to see that you have posted the Q + A questions to attempt to get input from those who have used those alternatives. Look very closely into whether the Keto diet might work for your son as it has for others (like a friend who I mentioned in reply to your question) and also some friends on here. Hopefully, they are still active and will answer your question.

Here are a couple of articles from the US National Library of Medicine with regards to research on the success levels of each

VNS https://www.ncbi.nlm.nih.gov/pmc/articles/PMC48...

Ketogenic Diet https://www.ncbi.nlm.nih.gov/pmc/articles/PMC40...

posted 3 months ago
A MyEpilepsyTeam Member said:

Intractable simply means that medications can only do so much, and they will never help him to reach a long-term seizure free state. I also have intractable epilepsy. However, the alternative treatments still might allow him to do so.

If his doctor has already declared his epilepsy as intractable, then he has already made it to the point where you should be considering the non-medical options.
And it is key that you discuss them with his neurologist for 2 reasons: First, his knowledge can help you to understand which are the best options for his seizures. Second, the discussion will allow you to know if his neurologist is one that is "old school" and thus does not believe in some of the alternative options besides medications, surgical implants and brain surgery.

With regards to VNS, not only should you talk with his neurologist about it, but also go to the Q + A section on this site and do a search to get to the discussion of VNS so that you can get the feedback from the many others who have had/still have VNS and how it has helped and the other effects that it has had for each. Reading the responses of enough of them can help. And when reading the responses of those who have had the VNS, clicking on the name of the friend on the site (and noting when this person was last on the site) and then asking this person (and as many others who you want to talk to) can give you a more complete insight into the average pros/cons of having the implant --while his neurologist might not mention anything except for the potential benefits and the potentially risks of putting it in.

posted 3 months ago
A MyEpilepsyTeam Member said:

He was diagnosed at age 7 , controlled with meds - Oxtellar XR. Then 2021 summer we started seeing some reoccurrences of auras mostly and seizures every 2 to 3 weeks. The doc increased the dosage of oxtellar and added Keppra . Keppra increased the seizures and he started getting clusters every 3 to 4 days of about 6 to 7 seizures … each lasting less than 20 seconds max. Keppra was stopped and we were advised to start Banzel … with that he got seizures almost every day with clusters and even in the night. We are taking him off Banzel now and want to get him to baseline of oxtellar before introducing anything new.

He is aware of his seizures , so far he has been able to manage them at school without any of his friends or teachers noticing .

With introduction of Keppra and Banzel his is more tired and with so many seizures he gets exhausted … he missed school as well due to that.

Anything you can share on how to keep him positive and engaged will greatly help me.

posted 3 months ago
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