Can my kid control his seizures?

[NewGuy]

I wish to extend all my appreciation to everyone who took their time to read and give valuable advice to someone like me who's currently in adjusting to my kid who has E.

It's great to find comfort to people whom, even if you don't know them personally, are also dealing with the same condition like in the case of My kid.. Thanks a lot Guys...

It's really difficult to try and comfort my wife since she has to deal with the pain most of the time. Since my work normally requires me to be out for at least a month at the time, all I can do is just try ease the pain away and give some advice mostly from what I read in the forum and through the Internet.

From the day we came to know that my kid has E, it seems like everything has changed dramatically.

I was fortunate enough to have some time off last week (about 5 days) and I personally saw my son have seizure attacks (twice) and had to deal with it calmly not for myself, but for my kid since I don't want him to see how difficult is for me to see him go through his seizures. Honestly right now, 2 months after we knew he had E, I'm still a bit clueless about so many things.

Although I was able to note down some things about his seizure attacks, I don't know who to ask, and the first thing that came to my mind was not the doctor, but you guys here in the forum. I hope you guys can tell me something about my observations:

1) My son normally is aware whenever his seizures are about to start. One time I ask him what was wrong since he seemed to have stop from playing and he said that he feels "it" is coming so I managed to carry him to his bed and he had his seizure there. Is it possible for him to know or control his seizures?

2) Everytime he has an attack he always tries to control it. I don't know if it's possible but I noticed that he tries to control it (and sometimes he's successful) until the point that he can't anymore and just gives in to it... Is it possible for him to be aware of what's happening even after his seizure attack?

3) Can drinking cold drinks, ice cream or anything cold or even chewing gum trigger his seizure?

4) I called my house the other day and my wife said he had 2 consecutive 15 minute seizure (at least), I don't know if it's accurate and I don't even know when can you officially start timing the seizures. Does it start from the time he has shortness of breath or from the start of his "jerking"? I told her 5 minutes is already long and that 15 minutes is quite impossible so I don't know if what she said was accurate...

Had his MRI done before I went back to work and initial observations point that it's not that serious but we have to go back to his neuro once i get back home in two weeks to verify this.

Hope you guys can share you opinions about this.

Thanks Guys....

 

[Crystal11]

I am sorry you are having to deal with so much at one time- I think after he sees the neurologist, has EEG, MRI, or CT testing and even some bloodwork, maybe they can tell more. As far as cold drinks and things- pretty much anything could be a "trigger" but they would know for sure if they could possible have him take in one of those possible trigger items as he is being testing with the EEG- The EEG would show seizure/epileptiform or spike and waves, or any other form of waves prepresenting his electrical activity. 15min is way way too long to not be treated in the ER. Anything after 5 min should be a trip to the ER immediatly. Shortness of breath I haven't really heard of with a convusive type seizure, ones like Grand mal, myoclonic or A-tonic/drop attack type seizure. It's could possible be a panic attack, or another axiety condition to a specific seizure disorder- but other testing would help find out what could be the cause.
I wish you all luck here-

Take care and be safe-
-CM

 

[skillefer]

Hi NG! Welcome to CWE. From what you've described, your son has auras. Auras are kind of like a yellow light on a traffic signal...they warn your son that something is coming. He's lucky. Many of us here don't. I don't know whether he can actually stop a seizure from coming, but I think I've read here on another thread where some people could by breaking the thought pattern. Ok, let me see if I can explain this...Your brain is kind of like the street lights in a city. Most of the time, they react to the sensors in a calm pattern so that traffic moves along nicely. Sometimes, too much information or conflicting info hit the sensors and cause them to start firing messages faster and faster to the lights. This causes the lights get confused and switch like crazy. That switching like crazy is what a seizure is like. Now some people say that they can interrupt that switching and essentially "reset" the lights by putting their mind on something else....not thinking about the seizure but doing something that pulls their mind from it, like saying a rosary or counting beads or something...Now, I don't know whether or not that's possible...so I can't say for certain. Just letting you know what I've read.

As for the length of the seizure, you and your wife need to know that if a seizure goes beyond 5 minutes, your son needs to go to the emergency room. Also, the length of the seizure does NOT include the post-ictal time (The time when he's relaxed after the convulsions..and kind of spacey.) I hope this helps.

 

[skillefer]

Hmmm...shortness of breath? He could be hyperventilating and actually triggering it that way. Some people have to give up activities or carefully monitor activities that cause them to hyperventilate such as strenuous exercise, swimming, etc...

As for cold, it might be a trigger...but that's hard to say for certain based on the info you've given. The best way to try to figure out triggers is to keep a journal. Write down the following.:
1. Food and drink (EVERYTHING he eats/drinks, when, where, how much, when....)
-this helps rule out low blood sugar, and helps to see if the seizures might be linked to an unknown food allergy.

2. Sleep ( how many hours he gets each night and whether or not it's interrupted.)

3. Stress (kids have stress too....and you have to note any illnesses here. Also, what he does to deal with teh stress. Too much stress can trigger seizures.)

4. Odd feelings (odd smells/tastes/feelings/sounds/sights, deja vu, migraines, etc....)

5. Seizures (when they happen, how long they last , what he was doing prior, where they happen.)

These are the 3 most common triggers....there are plenty of others. But by keeping track of this info, you'll be able to give the doc more information and help them cross off certain possible triggers, and if you notice a pattern, then hopefully you can help your son avoid those triggers.

Personally, I have grand mals (tonic clonics). I've found that the length of my seizures is reduced when my hubby or mother-in-law place a cool damp cloth on the back of my neck and on my forehead. It works for me.

 

[Crystal11]

Hello again- i forgot to mention about when you asked about weather or not he could control his seizures or "episodes".. usually if someone is having an aura or warning to a seizure they will sort of know- I have auras with my complex partial seizures and am able to tell something is wrong and even have some time to get somewhere.. or tell someone. Usual though you cannot stop your own seizures if they are epileptic or caused from abnormal elect. discharge in the brain- but it's not totally impossible.

Definatly write you lists, keep journals and give those to your neurologist treating him. Make sure he goes to a neurologist rather than just a PCP just to have a more highly trained person to work with- if the neuro. finds that they cannot help as much as possible then they would refer to a epileptologist for more extensive help.

Please take care, best of luck.
-CM

 

[KellyD]

Hey New Guy! Can I just start by saying I am so sorry to hear what you guys are going through, I know exactly how you feel, especially for your wife because my baby has epilepsy too and I'm usually the one at home by myself dealing with it alone and it isn't easy. My dr told us that anything over 3 minutes is time to call an ambulance. It is better to be safe than sorry. The medics can give him a shot to stop the seizure so it is always worth the call. I have a different seizure type to your son, mine are complex partial and I would have a scene play out in my head and there would be loud music and it would start to feel crazy and out of control like skillefer said but when I would realise what was happening I was able to make it stop by literally saying STOP over and over in my head and I would come out of it. I don't know if this is something everyone can do or if I was just lucky. It is great that your son is aware enough to know when it is coming so that he can get himself someplace safer or can alert you to be prepared for it. I hope your neurologist can give you guys some answers and things start to get better for you. In the meantime this is a great place to be for advice and support. Maybe it would be a good idea for your wife to join (if she hasn't already) just so she doesn't feel so alone. Best of luck.

 

[epileric]

Sorry to hear about you child.

What I've found helps me is:

making sure I take long, deep & slow breaths when I feel a seizure coming on.

Keeping my thoughts on track. My thoughts run wild during a seizure until a neurologist suggested counting backwards by 2's starting at 99. I never get past 91 & sometimes it slows the seizure, sometimes it doesn't but the after-effects (post-ictal effects) are always less. I have found that sometimes it's not good if I panic that I didn't do it right away. That stress increases the seizure.

Cold drinks, gum or ice cream can trigger a seizure. There was a specific ice cream dish (with brownies-Mmmm) from the Dairy Queen that would always trigger a seizure in me about 10 minutes after I was done. Either way High or low blood sugar can increase your chances of a seizure.

Hopefully by keeping a diary like Skillefer suggested you can pinpoint your sons seizures triggers.

 

[Meetz1064]

everyone

is giving you some WONDERFUL advice here.

There are things to consider too, to be able to train his brain, eventually. Like Neurofeedback. Both the host, Mr B and RobinN can attest to the veracity of it--Mr B's wife Stacy has used it quite well, and Robin's daughter, Rebecca has also.

DO take the time to try to figure out his triggers first, though. It will help you, and his doctors immensely. OK, it's a pain in the arse. But it will be worth it in the long run. It might even pay off to have a stop watch nearby for Mom to use to TIME his seizures with....just so that there is no confusion....

Welcome to CWE, we are happy to have you here. There is plenty of information to be had. Check out all of our nooks and crannies--Mr B has done a WONDERFUL job of building us an AWESOME home here.

Take care!

Meetz
:rock:

 

[RobinN]

Welcome to CWE

I have read many stories of people that can learn to change the direction a seizure is taking them.
This is what the Andrews-Reiter Epilepsy Research Program

While not all forms of epilepsy are totally controllable in the sense of eliminating seizures, approximately 83 percent of the patients participating in this treatment approach do achieve control over their seizure disorder (see the section on scientific papers for information on patients success in gaining control). The majority did learn to control how epilepsy affects their lives by reducing the negative effects of having epilepsy, while enhancing the positive effects of increased self-esteem and resolving quality-of-life issues. Despite having a chronic illness, you can gain a sense of being in-control of your epilepsy, of your well-being, and of your life.

I have been looking for what causes my daughters seizures instead of medicating the symptoms.
It has taken us on a wild ride, but we are controlling them much better now, without medication.

 

[LivingFruity]

Welcome to CWE :hello: I know this must be a scary time for you, and for your wife. My 7-year old was recently diagnosed with epilepsy and witnessing his seizures have never been easy.

We found a way to control his seizures naturally, without meds. My son could always feel his coming on, just as your son is able to do. That's definitely a plus as it enables you to get him to a safe place.

I would take some time to research natural methods for treating this. Neurofeedback, nutrition, diet, supplementation, etc. Have your wife keep a diary for your son to look for triggers as Skillefer suggested. There is hope, so hang in there

 

[TeeTees]

Well in response to parts 1 & 2 off your question - I can TOTALLY relate to those, as I do it myself.

Being completely aware during an aura, I can 'set myself up as being ready' for the seizure, and therefore sometimes get rid off the damn thing....hence, controlling it like your Son.

 

[Bernard]

Hi NewGuy, welcome to the forum. :hello:

1) My son normally is aware whenever his seizures are about to start. One time I ask him what was wrong since he seemed to have stop from playing and he said that he feels "it" is coming so I managed to carry him to his bed and he had his seizure there. Is it possible for him to know or control his seizures?

Yes, many people have "auras" or otherwise are aware when a seizure is imminent. There are several neurobehavioral techniques that your son could try to "short circuit" the process and potentially avoid the seizure. Try finding a copy of [ame]http://www.amazon.com/exec/obidos/redirect?tag=projectmana0a-20&path=tg/detail/-/0802774652/ref=ase_projectmana0a-20?v=glance&s=books[/ame]

2) Everytime he has an attack he always tries to control it. I don't know if it's possible but I noticed that he tries to control it (and sometimes he's successful) until the point that he can't anymore and just gives in to it... Is it possible for him to be aware of what's happening even after his seizure attack?

There are many different types of seizures. Some involve total loss of consciousness (generalized seizures), some involve impaired consciousness (complex partials), and some (simple partials) involve full consciousness awareness.

3) Can drinking cold drinks, ice cream or anything cold or even chewing gum trigger his seizure?

Yes, it is possible. See reflex seizures

4) I called my house the other day and my wife said he had 2 consecutive 15 minute seizure (at least), I don't know if it's accurate and I don't even know when can you officially start timing the seizures. Does it start from the time he has shortness of breath or from the start of his "jerking"? I told her 5 minutes is already long and that 15 minutes is quite impossible so I don't know if what she said was accurate...

Many doctors consider a seizure that lasts longer than 5 minutes as status epilepticus and recommend seeking immediate emergency medical attention.