newly diagnosed son

[mommymowery]

Hi all,
About a month ago, my 8 yr old son was diagnosed with epilepsy and his neuro said it looked similar to Rolandic epilepsy but not exactly, and his EEG showed what appear to be partial complex seizures in his temporal lobe. Mostly these were seeming like he was just spacing out and not listening, his teachers and Drs all kept saying ADHD (when they don't know, it's always ADHD it seems) but in December he had some super scary sleep walking type episodes for the first time ever, where it was like he was just not "home", wandering around aimlessly, seemingly unaware of what was going on around him. Terrified, I laid him down to sleep and got him a referral to the neurologist. He had 2 more like this before we were able to get in, and after the EEG he was officially diagnosed and the dr put him on generic Keppra. The first few weeks of medication (we started at 1 ml twice a day, and were instructed to up it by a ml each week until he got to 5 mls twice a day) it was like he was a whole different kid. He was more vocal, retaining more information, completing school work like a boss! When we got to 4 ml doses, I saw a lot of regression and the dr told me to lower it back down. Things seemed okay for a bit but since this last Friday he has been having more seizures than ever before. Has anyone had a similar experience? Thanks guys, this is all new to me.

 

[acshuman]

! ! ! ! WELCOME TO CWE mommymowery ! ! ! !

Your decision to join CWE will provide you with the experience that many of us have gained through the many combined years we have dealt w/E!
One of the hardest things for a parent to deal with is seeing their child having seizures and NOT finding a solution for their child's condition ASAP, but in many, many cases it is going to take some a serious amount of time to reach that sloution or treatment. There are so many different AEDs and each one is going to react differently for each person who takes it! This makes the number of treatment possibilities almost never ending! This is where a parent may feel as though their child is being used as a lab rat. The problem is, this is the only way for the doctor(neurologist, epileptologist) to find the correct treatment plan for that child! Each of these many AEDS that the doctor feels could be helpful has to be actually tried by the patient to see if it may work. If it doesn't, the doctor will have to wean the patient off of the present AED and start a new AED. Each of these AEDs has to be taken for a long enough time to reach a 'blood level' needed by a person for treatment before the doctor can be sure of whether or not it will be a successful way to treat the patient's E. This is what seems to take forever for the parent. onder:
The parent(s) need to have a lot of patience to deal with this in a good way! That is why 'patience' can be a 'best friend' of a person who has E or a caretaker of a person w/E.
This may take time, but you have to be strong to deal with what may be a 'long wait' for the successful treatment you want to reach! :tup:

acshuman

 

[Porkette]

Hi mommymowery,

Welcome to CWE! I started having absence and complex partial seizures when I was 10 yrs. old (54 now) Just like your son my seizures started from the right temporal lobe. Often when I have a complex partial seizure I will get up and wander around and not even realize that I'm walking around and when I come out of the seizure I find myself in a different location or room than before the seizure began. With the absence seizures I just have a daydream look on my face for a few seconds but if someone is talking to me I will respond back to them but when the seizure is over I don't remember anything that happened. I found seeing an Epileptologist was the best thing I ever did the Dr. was able to pinpoint the cause of my seizures and had me on the least amount of meds, Later on he did a DNA test on me and found out I was drug resistant to all seizure meds out on the market so I was put on cbd oil (medical marijuana) and I am amazed on how that has reduced my seizures to the lowest they have ever been in my life.
You may want to start keeping track of your sons seizures. Get a calendar and write down any time he has a seizure and what type of seizure it was. Also take note if there's a low pressure in the weather or if your son is sick with a cold or virus because that can sometimes trigger seizures for some people. By keeping track of your sons seizures his Dr. may see a pattern in the seizures as to what time of day or night they happen or what days of the month. Your son is getting near the puberty age and when hormones change it can sometimes trigger more seizures for some people. As crazy as it may sound I started putting coconut oil on my skin once a day and that in turn made ketones in my body to help reduce the seizures. You may want to give this a try with your son or take him to a licensed dietician and get him on the ketogenic diet to help reduce or stop his seizures. I wish you and your son the best of luck and May God Bless the Both of You!

Sue

 

[mommymowery]

Thank you so much for your reply Sue. I am actually looking into trying some CBD oil for him, as I prefer to use natural remedies whenever possible. I have a journal that I keep for his seizures and i note the time of day, what we were doing, etc, but hadn't thought to note the weather. I'll start doing that. I've also been reading up on the ketogenic diet, and will talk to a dietitian because he also has developmental coordination disorder and an SPD (he's a very active sensory seeker)and my biggest concern is he is very very thin. I already supplement with omegas and vitamin e, and phosphatidylcholine to help process the extra fats, and make nearly everything we eat myself, to avoid additives and dyes as much as possible. He's had more seizures this week than the previous month combined and i wonder, can stress be a trigger? He has visual perception problems and reading has always been a challenge and at least today, he definitely had an episode during reading time and took a 2 hour nap after. Thanks again for sharing with me.

 

[Hobbes]

I'm sorry you now have to deal with this but treating this may help other issues your son has or put them into a context where some might be addressed differently. While it really is a hassle having to experiment for each patient, it can have big payoffs.

There is a range or spectrum for these according to ILAE - see https://www.epilepsydiagnosis.org/syndrome/ects-overview.html I've seen papers that say not all deficits remit with seizures so it is good your neurologist sounds focused on treating this.

Back before there were organic sections in every day markets a friend in high school had a pin that said, "Cyanide is organic" - aka not everything organic is safe/good! CBD is a drug, a poorly understood drug that deserves much study that I'm concerned will be derailed in the current political environment. Most drugs come from nature, that doesn't make them safe so please exercise great caution. So if you eventually use CBD, use it while working with the neurologist just like you'd inform them of any other vitamin, supplement or drug the child takes (over the counter or not). CBD is often a track that parents with children with devastating epilepsies try, it may not be something to try right out of the gate and your neurologist will probably advise against it unless a few differently chosen (but appropriate drugs) do not work. Dietary treatment for a rolandic epilepsy may not hit the treatment bar for your neurologist to recommend it, it can be involved and too inflexible for some. You could explore less extreme ratio diets and see how that goes wrt your child's sensory issues and if adherence will be an issue.

Common seizure triggers for our child are illness and stress (good stress or bad). Our child would not be able to do dietary treatment (carbs are some of the few foods she will eat, opposite of a sensory seeking child, won't even eat whipped cream). Initially our child's diagnosis was partial seizures (never fully controlled with meds) but years later it now appears to be in that spectrum linked above only an atypical variant as she now has atypical absence and negative myoclonics (those seizures are controlled). We currently see a pediatric epileptologist, things have mostly calmed down and I hope we can try going off meds in a few years.

 

[valeriedl]

It's hard for drs to figure out which meds and dosages to give people, not everyone is the same. It isn't like you can just tell everyone to take a certain med at a certain dose and it will work.

When I was first diagnosed with epilepsy, 14 years ago, I tried so many different meds, dosages and combos before I found ones that helped. Some didn't help at all, some caused more seizures, some might have worked but I couldn't handle the side effects of and other times I had to change meds because the one's that I had been on that were helping stopped.

Since he started acting differently after the 4 ml doses then that might be too high for him and he needed to lower it down like your dr said or it's even possible that he might need to try another med. It's a very frustrating trial and error thing sometimes that just makes you want to pull your hair out!

 

[slobbering at night]

Hello Mommymowery and welcome to the forum I too am new here.
I haven't read enough about other people's seizures but it sounds like your son and I have very similar ones. I get the bigger ones only at night and during the day I can get déjà vu. I totally function during the déjà vu but it usually makes me really sick to my stomach, so you might want to keep an eye out for that. When I was close to his age it would take me as far as to throw up just a little bit but as I got older I learned to control that.
Another thing to make sure of is that he doesn't get hurt doing those night time sessions. I've tried to get out of windows before (not much success fortunately) and I can unlock the little latches on our bedroom doors. My wife just isn't strong enough to hold me back and I've even bruised her arm before from grabbing it. I'm not trying to scare you with these things, anymore than I'm sure you already are scared, but at the same time it's a real thing with that darn sleep walking stuff. I'm sure they'll find the right meds for you and keep him eating right!

 

[valeriedl]

Another thing to make sure of is that he doesn't get hurt doing those night time sessions. I've tried to get out of windows before (not much success fortunately) and I can unlock the little latches on our bedroom doors. My wife just isn't strong enough to hold me back and I've even bruised her arm before from grabbing it. I'm not trying to scare you with these things, anymore than I'm sure you already are scared, but at the same time it's a real thing with that darn sleep walking stuff.

I've gone through periods of doing different things during seizures. At first I'd just sit there, then after a few years I'd pick things up and play with them, I'd gone through a period of walking around too. I tried going into the basement during one seizure, trying to shove my husband away from the door, but luckily he's strong enough to hold me back. I gave him a pretty good fight though. I'm not trying to scare you either too.