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mzollinger

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I'm new to the forum. My son had his first grand mal in PE at school exactly 2 weeks ago from today. His second was also in PE 2 days ago. I have so far in this time period seen him have grand mals, partials, and even a focal seizure (is that the same as a partial?) in the routine EEG he had taken shortly after his first grand mal. After the 2nd grand mal, my son had a partial seizure in the hospital while waiting for the Dr., and the Dr. was able to get him referred to a good Dr. for the next day. We had to drive a long way to get to a good neurologist to get him seen. Luckily, we just returned from that visit yesterday. But, on the way home, he had 2 more partial seizures in just an hour's time of each other. This new medication he started just 2 days ago, makes him extremely hyper and talkative, which he normally is not. He's normally a pretty quiet boy. I'm concerned that he's having MORE partials and not less since he's been on the meds, and he even woke up last night in the middle of the night saying he 'felt funny', and threw up randomly. Is this all normal? I need help and advice. My brother had epilepsy, but, being the sister of someone with it, and the parent are 2 different things. I have no idea what I'm doing.

My son's MRI is scheduled in 2 weeks.

Thank you!!!
 
Hi there, welcome! Sorry for all the troubles, I'm sure it's really difficult watching your son going through this!

What type if medication is he on? A lot of medication has side effects that do settle over time, but they're definitely hard to work on to. And something I always focus on is that the doctor prescribes it because they feel the benefit out weighs the side effects... At the same time, don't hesitate to call and ask the receptionist if it's something to be concerned about!
 
I'm not sure the exact spelling, but, he's on the generic version of trileptal. The Dr. did say it could take 6 weeks for him to adjust to his new medication. Is vomiting a normal reaction?
 
I found a good website but it won't let me post the link... Google search emedicinehealth oxcarbazepine side effects

It says vomiting is normal (found one website that said side effect for about 22% of people), however said to contact doctor for worsened/increased seizures or for hyperactivity. The one thing I'll say is - my seizures come in clusters. When I have a simple partial, I end up having 5-7 over the course of a few days.. So perhaps this is just that. If these are new then you're maybe just finding out what his seizures are like.

It does really sound like you should contact the doctors office though and be sure that everything is okay. Last thing you want to do is worry anymore about your son, I'm sure you're worrying enough as it is :) let the doctor make sure he's okay!
 
Thank you for that information. I read the side effects and I mentioned my concerns to the Dr. yesterday and he told me that it was most likely just because his body is trying to adjust to the meds. He's never been on any before. So, I'm going to keep and eye on him and see. They are increasing his dosage next week...which has me a bit concerned. I'm not going to lie. LOL
 
I'm sure! I've found it gets easier each time they're increased though, less hard on my body each time. I hope it's the same for him! Take care, and keep us all in the loop! Everyone on here is wonderful for info, or even just venting!
 
Hi, This forum is great in that finding information/advice that Dr. don't give you. The people here are willing to share what they have gone through.

I'm no Dr. but it sounds as if this isn't the right meds, for him.

All meds. have side effects it's a trial and error to find the one or combo that works best for your son.
 
Well, since it's only been 2 days, I think I will just watch and see how he's doing. Today he has been much more calm and we haven't noticed any partial seizures today. He hasn't thrown up, but, after researching it more, I guess that can be a normal side effect. But, I'm keeping and eye on him and we will see. I appreciate everyone's thoughts and advice. This is all so new to us.
 
Each one has diff. reactions to the diff. meds.

It is up to each of us as to what meds. give us best seizure control and at the same time have a good quality of life.

Sounds like you are staying on top of his situation.:clap:
 
Hi mzollinger, welcome to CWE!

I'm sorry for everything you're going through -- as you say, it's one thing to deal with epilepsy as a sib, another as a parent. You're doing everything right -- asking questions, getting informed about epilepsy as well as anti-seizure meds. There are a lot of unknowns with epilepsy, and with the anti-seizure meds as well. Don't be afraid to call the doc about anything that seems worrisome.

Keeping a diary is a good way to track medications -- it can give you a sense of what happens at each dosage increase, what side effects appear (if any), if side effects are getting worse/better/staying the same, and if the seizures are getting worse/better/staying the same. It can also help to identify and triggers or patterns related to the seizures.

A helpful site for medication side effects is the "askapatient" one. It shows patient reports of their experience with a given med along with an indication of the dosage they were on and how long they were on it. The one for trileptal is found here: http://www.askapatient.com/viewrating.asp?drug=21014&name=TRILEPTAL

Best,
Nakamova
 
Welcome to CWE! I just wanted to give you a ((HUG)) for being such an awesome mom :)

Now tell him to quit trying to get out of P.E! ;) jk jk

I'm sure this is a nerve wracking experience for the entire family. But you have friends here who will listen any time you need to chat, need advice, need to vent, and there is a section here for teens if he chooses to participate.
 
Thanks everyone! I do appreciate all the helpful insight. My son is 9 years old. It's hard to explain to him why he can't do what his friends are doing like playing video games, and he gets really frustrated with me. I'm not sure what it was about that PE room, unless is was the florescent lights and all the movement of the kids running back and forth??? The first time he was playing dodge ball and then stopped and wen to the side of the wall for a bit just standing there for at least 5 minutes before he went into a grand mal. When he was in PE the second time, he was sitting in a chair being the 'whistle blower' since I wasn't allowing him to do long physical activity. When the whistle didn't blow, the teacher turned around and found him on the ground on his stomach having another grand mal. This time he wasn't even being active! The only thing I can think of is that it might be the lights and the movement? When he had his EEG, after it was done, she flipped on the lights and his eyes rolled to the left around at least 4 times in a row. I'd never seen anything like that before...but, I figured the lights must be a trigger from that.
 
It does sound like he might be photosensitive. Triggers can be delayed or cumulative too, (as opposed to occurring immediately prior to the seizures). Fatigue is the #1 trigger, but triggers can also be things like low blood sugar/pressure, dehydration, illness/infection, metabolic issues (deficiencies), food sensitivities (MSG, gluten, aspartame, etc.), environmental stressors (fluorescent, flashing, or dappled lighting), etc.
 
Trileptal took about 6 weeks to fully work for my daughter, shes 12. She sometimes complains of a tummy aches but it comes and goes. We have good seizure control though. I know how scary it is being the Mom. We want to fix everything. Hang in there. Good luck!
 
GREAT NEWS!!! So excited that my son's MRI came out normal...guess he officially has been diagnosed with epilepsy. That I'm not excited about...but, at least he doesn't have a tumor...I'll take that.

Now, to get him regulated.
 
My daughters seizures happened at similar times of the day, however it took me about 4 yrs to figure out that it was related to blood sugar levels, hormones, and gut health. She was 14 at the onset of her first seizure. She went on to have over 50+ Tonic Clonic seizures. She was a competitive athlete so her body required nutrients for energy more than most. Meds increased her seizure activity, and I only came to realize this after four trials and extensive journaling. She remains med free and seizure free as long as she maintains good nutritional choices and her blood sugar balanced.
 
BTW my daughter has a heterotopia ( birthmark on the brain in the frontal lobe) of which I was told was the cause of her seizures. It may lower her threshold, but she still remains seizure free. The connection was elsewhere and if I had not kept a journal, she would most likely still be on meds and not off living her dream.
 
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