Parent in need of help.....

[stefwhit]

My twelve year old son had his first seizure back in February of 2007. He has had about six since then with two more on Thanksgiving. He is treating with a Neurologist who has prescribed Trileptal. He had a normal EEG, along with a normal MRI and CT. We have an ambulatory EEG scheduled in two weeks. I am someone who needs to have answers, but there are no answers that have been given to me to explain why. I know that everything can not be answered. I have been trying to figure out if there are any triggers in common with the seizures he had, the only thing I could come up with is Coke/Sprite Zero and diet sodas. I have seen some information about Aspartame - does anyone else experience seizures after consuming Aspartame? The other thing is, my husband (not my sons father) and I just split up, he was my rock and trained in emergency care. These were my first seizures to get through on my own (there were other family members there). Since this has happened, I am following my son around and asking him if he is ok every ten minutes. Can seizures be caused be stress, computer useage??? Thank you for your time and any suggestions/answers would be greatly appreciated.

 

[borgolibero]

Yes, seizures can ceirtainly be caused by stress but my esperience was: when I was 18 years 2 seizures in about 2-3 weeks, normal EEG for the first 2 times, normal Computed Tomography but a good hospital succeded in find in my EEG something wrong, it was difficult to find. Since then I have to take drugs, but I have a normal life, I married, I had a child, find a job... you only need a good hospital and a good doctor

 

[stefwhit]

Thank you for your reply. Hopefully I will get an answer from the 48 EEG in 2 weeks.

 

[darkmarkshark]

Caffeine is a fairly common seizure trigger - don't drink enough soda to know if its present in those drinks or not though. Does he have seizures after eating a decent amount of candy?


Also are their any food ingredients he consumes more of when drinking those drinks - ie if he is typically drinking them while eating hamburgers, pizza, or pasta, then it could be the increase in wheat gluten rather than the drink.

I had a bad nocturnal seizure from going a bit overboard with the thanksgiving holiday - I could have handled one non MA meal but I should have known better to eat two leftover meals. I'm just now beginning to recover from my headache and neckpain

Seizures can be caused by stress. Also computer usage, especially computer games. I have to have Shockwave Flash player turned off if I'm to browse the internet, and can't play any computer game that involves flashing or lots of movement. You should probably know if he's photosensitive by now though so the only real risk would be sites with a ton of movement and animation (like nickeolodeon and neopets)

Also keep in mind that a normal EEG does not mean that he isn't having seizures. Not all seizures show up on them - are you keeping a journal of his seizures, along with weird behaviors/confusion? You want to do that. Since you're suspecting a food correlation, also document what he eats and when to see if you can find any consistancies

 

[joan]

Hello and welcome. You are not alone. Hopefully your video EEG will give you some answers. In the meantime do research on E. Some is genetic, some is acquired thru injury or illness. Some are sensitive to lights, smells, foods. It will take a bit to get it all sorted out but I am sure you will do fine. Hang in there and let us know youre ok.

joan*

 

[ziggidypoo]

Hi and welcome. While on triliptal, make sure the dr has blood-sodium levels checked frequently as it can cause low blood-sodium which can cause grand-mal (tonic-clonic) seizures and all sorts of problems.

Before my last readjustment of meds, I found excess computer time could trigger me.

Also, we with E (epilepsy) have to get adequate sleep.

I am so proud that you are a parent who cares enough about your child to get the help NOW while they are young. It will help both of you to get this settled early.

This is a very supportive and caring group, so ask all the questions you want. I am fairly new too and they have been very understanding and loving and full of answers.

 

[stefwhit]

Thank you all so much

I am so glad that I found this forum. Everyone has been so nice and I have received so much information. My son is so scared and mommy is too. I will start keeping a more detailed diary.

 

[drarvindr]

Dear Stefwhit,
Welcome:hello:. Re: your son's seizure disorder , it is not unheard of for aspartame to cause seizures although it is mostly in people with phenylketonuria ( a metabolic disorder) which you would have most likely figured out anyway by now( typical presentation is a pale , blue eyed baby who reacts poorly to foods with Phenylalanine derivatives (like aspartame) , and who has some degree of mental impairment).
As for computer usage , if he plays games a lot , try to cut down a bit. If he is photosensitive these could provoke seizures. Most games are required by law to state that they can trigger seizure activity , from pac man upwards , so i don't really know what games are "safe".
Stress is a very important trigger. It is essential that you ensure he gets adequate rest at night. At least 8 hrs of sleep.
:agree: with darkmarkshark about the gluten , so you can try a gluten free diet for a while and see if it helps.
Also , and i feel this is the most important - DO NOT FREAK OUT. Try to stay calm as far as possible and don't nag him about whether he is feeling OK. He will probably get freaked out and get stressed in turn. I also recommend taking a first aid / emergency medicine course yourself as you need to know what to do in an emergency if you are to be the only one caring for him at home.
Hope he gets better soon

 

[stefwhit]

He does love computer games, our neurologist suggested one hour per day, which I am trying to stick to and find other activities such as drawing, etc. , although it is very hard to stick to one hour for a twelve year old. He is usually in bed by 9:30 p.m. The gluten thing has me wondering. I have recently (over the past two years) been tested for Celiac. I had a positive (recent treatment or early onset diagnosis) EGD followed by a negative EGD. I must admit, I have been nagging him and I will try to stop that.

 

[Bernard]

Hi stefwhit, welcome to the forum. :hello:

Aspartame is evil. A lot of people find some measure of success managing their seizure threshold with changes in diet. It's fairly easy to test and see what works too.

I'd recommend keeping notes in a journal/diary/calendar with information on seizure activity, diet (including snacks/drinks), sleep pattern and time in front of video screens (whether computer or TV). Sometimes it is easier to see patterns for potential triggers when you start writing it down.

 

[skillefer]

Hi stefwhit! Welcome to CWE. First of all, have your son keep a journal with the follwoing info: what and how much he eats and drinks as well as when
how many hours of sleep he gets each night
any stress he's under

Also have him jot down any odd feelings he may get (deja vu, spaciness, tingling, migraines, etc....) and how long they last.
Also have him write down when he has a seizure and how long it lasts.
All of this info will help his doctor and you figure out what are his triggers. The common ones are lack of sleep and stress. Several people here are also very senisitive to aspartame and other artificial sweeteners. I have to watch my blood sugar, as a dip in my blood sugar level can trigger a seizure. Some of us here are also what is called photosensitive. This means that strobe lights or certain flickering graphics on certain video games, or even flickering patterns can trigger a seizure. Also, puberty.

Now, as a person who started having seizures when I was 13, I'm going to give you my two cents about how you're reacting. And please remember, it's just my two cents. Ok, when I was 13, I started having seizures. And mine were grand mals (tonic clonics). The stereotypical ones that are shown in movies where the person falls to the floor and convulses. When I would come out of it, I always hoped the adults around me had called my dad and not my mom. Why? Because my mom's reaction to my seizures made me feel guilty for having the seizure. She was always stressed out by them and looked worried and scared. My dad on the other hand, would smile and maybe crack a joke. He was very laid back. His laid back way of reacting made me feel like the seizure was no big deal, and that everything would be ok. If the doctor's, emt's, or other adults asked me who they should call, I always said my dad. And for the longest time, as an adult, I would feel guilty every time I had a seizure. Fortunately, my hubby reacts alot like my dad did. Now, I'm not trying to lay a guilt trip on you. What I'm trying to point out is that your reaction may impact your son's feelings about his epilepsy. Please understand, for many of us, we will never learn the reason why. But we learn to accept, and move on with this condition. It doesn't change who we are. We are not our medical problem. And many of us have not let this medical issue stop us from being happy, successful, adults. Personally, I've gone on to get a graduate degree, have a wonderful career teaching (yes, I have seizures in the classroom sometimes, but my classes are fantastic about it because I've taught them how to deal with it starting from day 1 of school), have a fantastic family, and truly love my life. Did epilepsy stop me from following my dreams? Nope. It did make me not do certain things like swimming alone, bunjee jumping, or riding on roller coasters. But if that's all I've missed out on, than I think of myself as extraordinarily fortunate. Just remember, epilepsy is not a death sentence. So try to back off, and let your son be a typical adolescent. You don't want him scared of epilepsy, scared to live life or dream, or feeling angry at you for making him feel even more different than he probably already does. I hope that this helped.

 

[stefwhit]

Thank you. My son also has the seizures with convulsions, along with some where he looks like he is out of breath. I have gotten a lot better in dealing with them. Now I sit next to him and talk to him and smile. When he can understand me he gives me a thumbs up. I can tell when he is about to have a seizure (he must feel an aura) because he jumps up and runs to the bathroom, and of course, I follow. I have tried to tell him that he should just stay where he is and not be embarrased, but he still does this. Any ideas on how to get him out of this habit? He is very active in sports, this year he played football, just started basketball and he runs track. I am trying to let him be a typical adolescent, but trying to keep a time limit on the computer/video games is very difficult.

 

[Bernard]

... I can tell when he is about to have a seizure (he must feel an aura) because he jumps up and runs to the bathroom, and of course, I follow. ... Any ideas on how to get him out of this habit? ...

He might be able to learn techniques to short circuit the seizure process in that case. Have a look at Neurobehavioral / Cognitive Behavioral Therapy (CBT).

 

[RobinN]

Hi Stef -
My daughter began having seizures at the age of 14.
I have learned that nutrition plays a huge role in the disorder for many. The fact that you tested positive most likely means he could be sensitive as well. I have also learned that excitotoxins such as aspartame and MSG and its related byproducts (40 or so of them) are a huge instigator.

It does get easier. Just remember that for 12 years your sons body was able to handle his environment.

 

[alivenwell]

It's great to hear your son is athletic. The socialization of being a team member will really benefit him as well. That support is vital to feeling included rather than excluded. The only athletic activity I'd be concerned with is swimming. If he partakes in that one, he definitely needs a partner with him at all times. My aura saved my life.

Does it seem like he has grown significantly within the past year or so? Maybe his meds need a slight adjustment. A blood test of medications can measure that one. I'd highly recommend having that test done asap.

And, I totally agree with others in here. Stress is a huge factor. I own a dog who's about as objective as anybody can be. She's my buddy and more than worth her weight in gold. Ironically, my seizures became controlled right after I acquired her. Our stress busting walk and companionship is priceless.

Please don't be too protective. But, do stay as involved as possible. That's a real fine line for any parent. Your son has to be more involved in his healthcare while you still can influence him. Like others in here, I hold several college degrees in technical areas. Encourage him to be educated because he'll be competing with 'normal' people without epilepsy. He'll have to be several steps ahead of the competition in 6 years from now.

 

[stefwhit]

He loves swimming, but he is never alone. He has grown so much within the past year - which I understand can trigger seizures with growth spurts. We just had a blood test done at the hospital and we are waiting for the results. I do want him to be more involved in his healthcare. I would love him to meet other children his age with epilepsy that maybe he could speak to more freely about questions or concerns that he may have, since I understand he doesn't want to always talk with mom about his feelings. We live in Delaware, so I will look for some group that may help him.

 

[DanaC]

"What I'm trying to point out is that your reaction may impact your son's feelings about his epilepsy. Please understand, for many of us, we will never learn the reason why. But we learn to accept, and move on with this condition. It doesn't change who we are. We are not our medical problem. And many of us have not let this medical issue stop us from being happy, successful, adults."

As a new mother which might have to learn all this I thank you.
I need to feel this before being able to teach it to my child. It's so much harder because you believe you'll come to accept it, but it's not happening to you, but to your child, you'd like to take it from her and put it on you... A parent will always want to protect the child and maybe sometimes we do wrong with not understanding that our child might be stronger than we believe. Certainly for my baby is my responsability to make her understand she's so much more than her medical problem.

 

[joan]

E is very hard to digest. It does take time to come to terms with it. I also have found, it was harder on my son than my daughter (so far) With the kids, and their ages, its extra hard. They are trying to figure things out, life, and whammo from left field. this unwanted added hardship. Just love him, support him, talk to him, makehim think and share his thoughts and research your lil heart out to find what will work for him. It doesnt happen overnight but I promise it does get better. My 19 yo son, who was dx at 15, is really just starting to feel better about his E. We are also doing everything in our powers to make it better for him. We know we cant cure it but we can make his body as strong as possible. I try and tell my kids.. Es not the best thing but it certainly isnt the worst thing. In my humble opinion, boys a bit harder. My son wont tell anyone he has E. HE doesnt want to know anyone else with E. Says it makes him feel bad. They think and keep things within. They dont always let you peek into their fears. Also remember with E come other issues that make things a bit more interesting as well. Sleep, diet, exercise all necessary. We found a neuro phsycologist who helped alot with my son. Hang in there. Take a deep breath and know you are not alone and we will all get through this together *
joan*

 

[skillefer]

Totally understand Dana. And remember, learning to accept epilepsy, and coping with it are things that have taken many of us years. So don't feel bad. And as Joan said, remember, you're not alone. We're here for you.

 

[twincedar]

I know a little bit about what you are going through. My son out of the blue had 2 tonic clonic seizures on Sept. 2nd. The first at home and we did not even know what it was, the second at the hospital where it was named for us. They were about 2.5 hours apart. We went through all of the tests and all came back normal except for the EEG. However the neurologist we saw recommended not going on medication at this time and we are not using medication as of now.

The tests showed that my son was not photosensitive but he is a big computer gamer and I believe the games stimulate the brain and prolong play may do so in a negative way. (He would play 6 or 7 hours straight if we let him and on weekends it was a fight to get him off of the games). We have instituted some changes in his lifestyle:

1. strict bedtime same time every night even if it is a weekend
2. 1 hour of games, 2 hours of something else
3. limit caffeine
4. regular meals, I would like to shoot for better nutrition but he is 10 and that is difficult
5. good multi-vitamin every day
6. more outside time and physical activity

So far he has not had any more seizures, (little over 3 months) and if he does have another the neurologist will place him on medication.

I live in constant fear of that happening and watch him closely so I know some of what you are feeling. I don't know if the lifestyle changes have helped or not but they certainly haven't hurt. He seems to be happier with his game time limited. He would get so frustrated with the games sometimes. The neurologist we saw said the two most important things were nutrition and adequate sleep.


I wish you and your son much luck and will be thinking of you and your family.