new here with many questions~

[rebeccab]

Hi! my name is Rebecca and I have a 7 1/2 yr old son, Daniel who was diagnoised with nocturnal seizures in May. We were put on Keppra 2.5 mg 2 times a day on July 1 for a week we thought that was working. But then we noticed he was seizing during the day. We called the doc and he wanted to see what would happen if we took him off meds. Two days later the days seizes were gone but the night ones were still there (several a night). On about the 10th we were put on 2.5 mg of trileptal. 5 days later the day seizes were returning and we called and got the meds upped to 5 mg 2 times a day. Last weekend we noticed after a really busy day (bday party for a friend) he was having 1-2 little seizes while awake andstill having seizes that were just facial twitches at night. i called the doc again and we are waiting on the results of a blood test before decideing on what to do next.

I have not let him go on sleep overs since we knew this was going on nd right now I am not letting him goto friends unless I am goinng to be there just in case. I am not sleeping well because I am checknig on him 6-7 times a night. I honestly am afraid to go far just in case... we are not letting him climb trees, get crazy on the swing set or ride his bike right now.

I feel like I have a TON of unanswered questions and could really use any advice from someone going through this too!

1. we are going out of town this week. there is going to be a carnival and although he does not go on the big rides I am leary to let him do rides at all! What do you think?

2. I am nervous aboutt sending him back to school! I plan to have a meeting with his teacher any advice on what to say?

3. What about telling his friends? I have told his best bud because they are together so much come to find out he has seen some of these seizes and did not know what was up he is concerned too!

4. does food or drink hurt or help this? anything you are refraining from? or adding to your diet?

5 How long til we find the right med dose"? this seems to be taking forever~

these are just a few thanks in advance!

what about my other kids?

 

[kimmistin]

wow, sounds like you are quite overwhelmed. I too never sleep well as my daughter started having grand-mal eve seizures a few months ago.
How did you figure out something was wrong in beginning? Seizures do not just come out of nowhere. what was the initial onset due to? did he get an immunization? have a fall? anything out of the ordinary? my brother also has just nocturnal seizures, yet he got hit in the head by a baseball bat at 10 yrs old, at school, then seizures started. My daughter has uncontrollable epilepsy due to lack of oxygen at birth...just wondering where and when it all started for your son? Some kids do have a big food allergy that leads to more seizurelike activity; yet it is hard to tell. Meds are a nightmare and will continue to be...so many for different types of seizures; hard to get the combo right for us. Aurora still has anywhere from 10-50 daily seizures. For her it is a tick like action of arm jerking, eyes rolling up and tongue thrusting uncontrolled for a few seconds to 4 mins at a time; and in clusters thay may even last up to 20 mins....I think I will lose my mind some days! The more everyone in his life is informed, the more they can all help; see what is going on and try to comfort him when you are not present. Helps to have a big "team" Hang in there...our kids chose us because WE DO have it in us to get them what they need from life. Sincerely, Kimberley

 

[epileric]

Welcome Rebecca

I'm sorry to hear what you're going through. I guess I was lucky having the seizures so that it was my parents who were stressed about it, not me.
There are a lot of parents here who are extremely supportive. Take a look around & see if anything helps. I'd recommend checking out the nursery here where the topic tends to be about children.

1. we are going out of town this week. there is going to be a carnival and although he does not go on the big rides I am leary to let him do rides at all! What do you think?

First off, what kind of seizures does your son have? Most the childrens rides I've seen are very safe so I see no reason not to let him on regardless of what kind of seizures he has. I would watch to see if he reacts to the lights though, not all epileptics are photosensitive but keep an eye out for it.

2. I am nervous about sending him back to school! I plan to have a meeting with his teacher any advice on what to say?

I've had seizures all my life & I went to school. Make sure the teachers & administration are aware of the seizures & let them know what to do & how to react. I see no reason why he should not be allowed to do anything that other children can do.

3. What about telling his friends? I have told his best bud because they are together so much come to find out he has seen some of these seizes and did not know what was up he is concerned too!

I see nothing wrong with explaining what's happening to his but. It's a great way to educate people. However, I honestly believe it's his place to tell his friends. He may not want them to know & by you telling them that might make a bigger deal out of it than is should be. It allows him to own the seizure & give him some control over the situation (unless he'd rather you tell them). I also think when it comes from him they might be more accepting of it. Also, by dealing with peoples reactions from a young age he will learn what to expect from others & how (and who) to tell them.

4. does food or drink hurt or help this? anything you are refraining from? or adding to your diet?

Diet itself effects seizures but different diet effects different people. There are certain things that might encourage seizures but they differ from person to person the same way specific diets effect everyone differently.

5 How long til we find the right med dose"? this seems to be taking forever~

That also changes from person to person but it is rarely found quickly. You might even find that this specific med isn't working so you may need to try another.... and maybe another.

these are just a few thanks in advance!

what about my other kids?

What about your other kids? Don't let your sons epilepsy take your attention away from them. Also remember that there is no reason to be treat your son any different & your other kids will treat him according to how they see you treat him. It will also effect how your son thinks of himself.

Also, having had seizures all my life I've never been stopped from playing on swings or just being a boy. I feel that is how I've learned my boundaries & how to handle things during a seizure. I think not allowing him on the swing or to play normally isolates him & makes him "different" when just having seizures can do that enough.

It is a lot to process. Take your time, I"m sure others will have more opinions & please feel free to ask any more questions.

 

[Nakamova]

Hi rebeccab, welcome to CWE!

You might want to check out the The Nursery Forum here -- it's for parents of kids with e.

Does your son lose consciousness during his seizures? If so, then I would definitely give the carnival rides a miss, even the gentle ones. It may be tough for your son, but while you are still getting a handle on what may trigger his seizures, and how and when they show up, then playing it safe is the way to go. And do your best to make sure he's getting plenty of water to avoid dehydration, and staying away from the worst of the carnival food.

You might wait until you know more from the doctor before talking to your son's teachers. Is there a school nurse you could liaise with about medications and what to do if your son has seizures during the school day?

If his friends can handle the information, then go ahead and tell them (and their parents too). It's a bit like explaining that your son has a peanut butter allergy, or asthma -- it's important that they be aware of the situation, but it's should be presented to them in a matter-of-fact way.

There are a variety of dietary approaches that have helped some of the members here, including the ketogenic diet, MAD, GARD, and gluten-free. You can search for more info on those using the search tab at the top, and I'm sure other members will chime in with advice on that.

Unfortunately there's no way to predict which medicine/dose will be the winner. Everyone has a different reaction, and some folks' responses to medication can change over time as well. I know it's frustrating -- hang in there, and keep asking questions. Information is your friend (and so are the CWE members -- we're here to help).

Best,
Nakamova

 

[RobinN]

Nutrition has definitely helped my daughter. I don't like to use the term diet, as that has a history of being a cut and dry approach. Nutrition is what your body / cells need for energy. It is my belief that it can only help, not hurt, to approach any illness with this as the first measure.

Your son is definitely at an age where symptoms such as seizures might be showing up due to inadequate nutrition.