New parent of son who has epilepsy


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I am the father of a 17 year old male teen who was first diagnosed with epilepsy at 14 in July 2020 due to a seizure (his first) he had in the same month. He was started on Depakote which he took regularly for some time (likely a year). I say likely because at some point without telling us, he became irregular at taking it primarily due to hair loss. Around Jan 2023 when we discovered the facts, we stated that we could not support his driving school lessons or driving practice if he did not take his medicine as per his prescription. With that, he did start taking it regularly but he had a 2nd seizure in Mar 2023 just a few months after he resumed his prescribed dose. His dosage was increased but it was causing extreme drowsiness and overall he was feeling crappy so his neurologist switched him to Keppra 1250mg daily. He had a 3rd seizure in May 2023 while being regular on Keppra. Fortunately all three of his seizures happened around both of his parents and we could immediately help him and stabilize him. All three happened within an hour of waking up so likely he has JME. He has also had a few muscle spasms during waking hours, highly likely these were myoclonic seizures. At this time, his dose has been increased to 1500mg daily.

While there appears to be no literature to support this, my spouse has a nagging feeling that resumption of Depakote and in general resumption of his seizure meds played a role in the last 2 episodes. Personally I am torn but do not believe in that theory. I believe that going off the meds caused the 2nd seizure. The 3rd (imo) was was either due to the transition from Depakote to Keppra (his neuro had warned us that the three month period between switch of meds is higher risk) or Keppra at 1250mg not being sufficient. On Depakote, he has clearly lost weight and is now in the 35th percentile for weight vs. being in the 60/70’s before Depakote.

He is a pretty typical teen and highly resistant to any lifestyle changes that we suggest including staying current with his vitamins, taking the meds at the same time daily, morning meditation, starting the day with 15 minutes of a Mozart piece known to help with epilepsy, reducing screen time on his devices and reducing some of the more hard edged music he listens to. As his parents, we want him to have a happy, healthy and normal (as much as possible at least) life but are struggling at time with his resistance and are concerned.

Any perspectives on how best to handle will be most appreciated.
HI stayCalm,

Welcome to the forum! I understand where you are coming from in regards to your son because I have had absence, complex partial, aura, and myoclonic seizures like your son. I've had epilepsy for 51 yrs. and when I was your sons age I was on Depakote and it worked great for my seizures
but my body got used to it because I was on it for so many yrs. I did have the same problem as your son and I lost 70 lbs. in 4 months while on the drug and my blood platelet level got really low so I had to go off the drug. I was also on keppra and that drug increased my seizures and gave me a terrible temper. After that I went on vimpat and that stopped all of my myoclonic seizures and most of my complex partial seizures.

Have your son start keeping track of his seizures by writing down on a calendar what time he had a seizure and the type of seizure he had by doing this his neuro. may be able to see a pattern in his seizures as to what days of the month or what time of day/night the seizure happens. I would often get seizures when the hormones were changing and since your son is still young this could be what's triggering his seizures. Also take note if there's a low pressure in the weather sometimes that can bother some people because the air gets heavy and in turn that messes the hormones up in the body which can lead to seizures. If your son uses a cell phone or is around a lot of people using their phones at the same time he may be cell phone sensitive meaning the frequency of the cell phone will trigger seizures. I have this problem and when I go to the grocery store I will sometimes have a seizure when many people are using their phones.

When your son sees his neurologist again ask the neuro to do a DNA test on him by doing this it will show what is the best seizure med for your
son with the least side effects or it will show if your son is drug resistant. I found out I was drug resistant, and my Epileptologist had me start.
using the medical marijuana and to my surprise my seizures are at the lowest in my life. Also have your son take vitamin B12 once a day that helps.
calm the nervous system down. Have your son cut back on the carbs and starch foods and stay away from Nutra sweet or any sugar substitutes because Nutra sweet causes more electrical activity in the brain. When your son has his next e.e.g. tell the Dr. you want a special e.e.g done where
they flash different color strobe lights one at a time by doing this they will be able to find if certain colors are triggering your sons' seizures. I found out that fluorescent green bothered me the most.

To get the most help I went to a Epilepsy Center and started seeing an Epileptologist which is a Dr. who specializes in epilepsy. This Dr. works
with a neuropsychiatrist and neurosurgeon and they can find the best help for a person, keep them on the least amount of meds and find out
the cause of the seizures. You can usually find an Epilepsy Center at a University Hospital or a really big hospital. I wish your son and you the best
of luck and May God Bless All of You!

Finding the right meds to take is sort of like finding the right recipe because no one's the same. The medicine might have to be at a certain dose. You might need to take other meds with it. Sometimes the side effects are too bad and the med won't be a good one to take because of it. It will take a few weeks to find these things out too. It probably won't start stopping seizures right from the start but that doesn't mean that it won't in a month. Sometimes meds will decrease the amount of seizures and/or make them not as bad. Make sure he knows that he must take the meds as prescribed or you won't find these things out.

As Porkette said keep track of all of his seizures so you're neuro knows about it. When they happened, what he did during them and how long they lasted. I also keep a small diary that just says things that I've done during the day. Knowing what he's been doing could and when the seizures happen could help some too.

I hope you get a lot of help on here, I know I have.

It's nice to meet you!
Hello. I also have simple & complex partial seizures. I would complain of "weird feelings" in my head since childhood, but it wasn't until I had some tonic clonic seizures that those "feeelings" were diagnosed as seizures. They actually caught one on an EEG, which is how they diagnosed them. I began having complex partial seizures about 23 years ago. Those have been VERY troublesome for me, as they occur w/o any aura. Unless another person witnesses it, I do something to my surroundings, suddenly notice a large time gap or injure myself, I don't know that i've had one.

I have taken EVERY AED out there for the types I seizures I get. Those that I wasn't allergic to would work for a while, then the breakthrough seizures would start again. I Ncurrently take 500MG Zonisamide & 200MG Xcopri, but still get breakthroughs sometimes. When I was taking 400MG Topiramate instead of Xcopri, I averaged 3 breakthroughs/month.
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