New...and in need of support

[wendy]

Hello Everyone! I'm new here and in look of support.

My youngest daughter (2) has had some strange "spacing off" things going on. It's been mainly the past week we've noticed.

It's happened a couples times during a fit she throws (terrible 2's) and when she gets worked up about something or frustrated. But also does happen out of no where.

When I looked on the internet this morning it seems that Absense Seizures fit. I watched some videos of kids having one and this is exactly what happens to her. I'm glad I found this forum and hope this will be a great resource and support while we start this process.

We are watching her over the next few days and what she is doing at this time. She will be at grandma's and grandpa's so we can't get her in to the doc's right away. I want to watch and document her activities and frequency along with possible getting it on video to take in to the doc's.

Thoughts, support? Idea's? Things to watch for? Just anything is helpful at this point.

Are we over reacting?

Anything would help at this point. I'm really worried and not looking forward to the road we have ahead.

 

[Meetz1064]

No, it

doesn't sound like you're overreacting at all. As a matter of fact, my mother is the one who noticed mine first by some of the things that I was doing...so you're an on-the-ball Mom!

Quite often, stress (that 2-year-old temper tantrum) will trigger a seizure. But, at the same time, she IS 2. *grinning* I know how you feel very well.

That said, here's a list of things that I normally tell people to put in their E journals. You can skip the part about tracking her cycle, though.

1. Sleep. List how much & when.

2. Eating. List how much, when & what. It's possible to have seizures caused by allergies to food.

3. TV/computer/video games. Yup, they can affect you if you're photosensitive, so list when, what, and HOW LONG.

4. Menses (for women). Start tracking your cycles. CATAMENIAL epilepsy does exist, sometimes it's tied to ovulation, sometimes its right at the TOM.

5. Stress List when it occurred, and what happened.

6. Exercise List what you did, when, and any reactions.

7. Seizures/auras. If you have either, DOCUMENT THEM. Auras--note what they're like--do you smell or taste something that others don't? Hear something? Seizures--how long, when, where, what happened. If you don't KNOW what happened, get eyewitness accounts when possible and DOCUMENT THEM.

8. Smoking and alcohol. Ditch them--both are neurotoxins for our brains.

9. Meds (of ANY kind). List the dosages, and when taken.

Responses to the above list

1. You MUST get 7 to 7.5 hours of sleep as a MINIMUM, no ifs, ands or buts about it. (In your daughter's case it's going to be more than this--close to 9 or 10 hours)

2. Eating--one of the other mods, Skillefer, (we call her Skilly), promotes eating 6 small meals a day, using a dessert plate, filling it with a carb and a protein. Good idea, I think. However, some people, like me are allergic to certain foods. You might want to look into various diets. Ketogenic, Modified Atkins, Low Glycemix Index, Gluten Free Casein Free (see www.dogtorj.com).

3. Look into a glare screen or blue tinted polarized GLASSES (available by prescription from eye doctor). These can help cut down on seizures that are caused by photosensitive epilepsy.

4. GUYS--you may not have a cycle, but you DO have hormones. DO get your doc to do a full hormone screen, check thyroid, etc, just to make sure.

5. Use things like yoga, music, walking, whatever it is that you do to bust out your stress. Keep a separate journal to write in so that you can write out your feelings in--and keep it for your eyes only. Write it out by hand, two or three pages at a time. It helps A LOT. DO IT EVERY DAY.

6. REFLEX E can be caused by exercise, so DO track what you do. Keep in mind that you SHOULD NOT swim, bike, hike or bungee jump by yourself. Same goes for mountain climbing.

7, 8 & 9. 'Nuff said.

OK, the journal IS a pain in the arse. No doubt about that one. BUT it DOES help the doctors track things down.

Once you can take that journal in, point the different events out, what may have been tited to it, especially if there is a commonality, and then ask for an MRI (to eliminate physical abnormalities), and an EEG of at least 24 to 48 hours (those 20 minute to 1 hour things typically don't catch ANYTHING).

Hope this helps some..........

Oh, and by the way, welcome to CWE. There's plenty of nooks and crannies here to check out (the Library and Kitchen have lots of information--can you believe some people have seizures because of allergies to preservatives in food, or foods themselves? The Padded Room is great for venting whenever you need to, so feel free.)

Mr B, our host, has made us an AWESOME home here, so feel free to kick up your heels, and make yourself at home here.

Take care!

Meetz
:rock:

 

[wendy]

Thanks!

I got off the phone with her doc and they have scheduled an EEG tomorrow. I think the tests are going to be one of the hardest things of this process. We have an appointment with a Neurologist in August.

How do all of you cope if you are parents with children and dealing with Absence Seizures?

EEG's? What to expect?

 

[Meetz1064]

I'm NOT

a parent of a child with E, I'm an E patient myself. You might want to go do some checking around in the Nursery--it's a forum here specifically for parents of children with E.

In regards to hints---hm. During the EEG, try to keep her busy if they'll let you so that she won't scratch at the leads on her head. Sometimes they itch, and she's going to want to fuss with them. The MRI....due to her age, they may very well put her to sleep. She doesn't need to be awake for that, because they will simply look for physical abnormalities, NOT seizure activity.

DO remember that an EEG is a "snapshot" if you will of a moment in time. It only captures a "picture" of what's going on in the brain right then. If there is no seizure activity going on, then it won't show up. And, it is NOT unusual for EEGs to come back clean...........I had clean EEGs for over 40 years before stuff started to show up on mine. *eyeroll*:roflmao::roflmao:

Most importantly, don't forget to stay CALM around your child. Getting stressed out only makes things worse.

Good luck!

 

[Blondie47]

Hello Wendy,

I am a Mom of an a teen with epilepsy. She was diagnosed last October, but her first seizure was when she was two and a half. A long time in between!

My DD's first EEG, was with her binky,blanky, and a bag full of toys from the dollar store. Maybe a portable DVD player could used for a favorite movie.
I also let her use the medical tape to <tape up Mommy> just like her.
The distractions worked and she had minimal stress.

Keep a journal, or I use and excel spreadsheet, to record observations, phone calls, test results, doc appts, and anything else that is important.

 

[RobinN]

Hi Wendy - I am a mom of a teen also. Rebecca began having seizures at the age of 14. She is 17 today, and med free. Her seizures are looking like we have found a way to control them. What has made a huge difference is nutrition, and neurofeedback.

Making dietary changes, hasn't been a quick fix, but it has been far more positive than the anti seizure meds. Food sensitivities can be a cause of seizures.

I keep the records for my daughter on a printable calendar. I keep this in a notebook. I have it by month, and also made one that is a year at a glance. That way I have been able to see the positive progress that we have been making. Her doctor was impressed.... then she asked if we wanted to try the latest drug therapy onder:

 

[KellyD]

Hello, my little boy has epilepsy, he is almost 20 months now but was diagnosed at 9 months. Thankfully he has been seizure free for 7 months now! He doesn't have absent seizures although some of them could have been described that way, the dr assures me that he was too young for them to be absences. He mainly had tonic seizures where he would be stiff and arch back and stop breathing, often going blue but he didn't jerk or shake. The hospital where his EEG was done actually had a portable dvd player with some dvds which didn't really interest him at that time but I think if he were to be tested now it would be very useful. I think the hardest part is when they are attaching the leads, that can be uncomfortable and they have to keep still which is very difficult for my very active boy! As for dealing with it, I wouldn't say that I dealt with it well but you just find a way to manage, you have to because that is what your child needs. When Aiden had seizures I just went into auto pilot, I did everything he needed me to do but when it was over and he was sleeping it off I would get very upset. I agree with Meetz, it is very important for you to stay calm especially in front of your daughter. Even if you are a mess on the inside you can't let them see it. You have come to the right place for support, the site was the best thing I found to help me cope. You aren't alone and there is plenty of information available here. Keep us posted on how things are going.

 

[wendy]

Thank you everyone for the great support already!

I appreciate it and look to this is a place where we will continue to look for support as we travel this tough road ahead.

PS...we did great at the EEG this morning! We held it together good. It was a good feeling to get through the test to be able to find out what is wrong and get on the road we have of coping and dealing with it all. The first "spells" were hard to deal with, now that we know they happen, we are more supportive in a way to let her know she's ok and everything will be ok.