10 year old daughter diagnosed with E. 2 days ago

[CJR]

On Feb. 25th 2008 my daughter got up to go to school like normal. I heard a thump from upstairs and called to her. She answered in her sing song voice saying that she was fine. 15 seconds later she fell in a full tonic clonic seizure. Her first. She went to the ER and they misdiagnosed her as having Vasovagal Syncope. I disagreed with their findings so I took her to her pediatrician who "respectfully disagreed" with their diagnosis. A week later she was in for an EEG. A week after that the results came back as highly abnormal. Another week before the Neurologist could consult on the case and a diagnosis of Generalized Epilepsy was given.

In the space of that time I've spent all my time researching Epilepsy. We have no family history (not that it matters now) and she's never had any truamatic brain injury. However, now I can see that she has been having absence seizures since...well, forever! But she is extremely smart and the teachers always said that really smart people often live "in their own space" so we we're never alerted by her behavior. In the past six months we've noticed odd things like hand and arm twitches (we said they were probably muscle spasms) and weak legs (we told her she probably was having low blood sugar~as that is very normal in our family). Hindsight being 20/20 we missed ALL the signs.

I have no idea what category these "odd" seizures fall in. Matter of fact I don't even really know what "Generalized Epilepsy" means. We live in a very small town and everyone knows everybody's business. So I'm dealing with people coming to me in every store saying, "Once she's on Meds she'll be fine. Don't worry." Yet when you read anything online the meds seem to take on a life of their own. I don't know what to think.

Anyways, that's our story. I really hope that I get to learn all of your stories as well.

[RobinN]

I remember the feeling CJR. My daughter had her first tonic clonic seizure at the age of 14. I was getting conflicting answers, and that is when I decided to enroll in the University of Online Research. I proceeded to try to learn all that I could about my daughters illness. I do not tend to follow the trend to think that the major pharmaceuticals are the best answer. They can be the easiest for some. My daughter does better when not on meds, though she is not yet seizure free. We don't have the complications of the additional side effects and can pursue alternatives with a clearer picture.

For me, I found a wealth of knowledge with Dogtor J. He is a vet that has cured his animals of seizures. I found this incredibly and positively uplifting. My daughter pouted saying I now was calling her a dog, but his insights into the world of nutrition was to say the least an eye opener. I then joined some groups online through Yahoo, that were dealing with neurological disorders and how many of these were turned 180º around by diet and supplements. I learned recently that my daughter is toxic in mercury, and she has suffered her whole life with intestinal issues.

It is a puzzle as are other neurological issues, where knowledge is power.

BTW... WELCOME

[Bernard]

Hi CJ, welcome to the forum.

Something like 40% of people with epilepsy find good seizure control with anti-epileptic drugs. The rest have to explore other options.

Sounds like you are getting proactive in your daughters care. That's awesome. Make yourself at home here - there's a ton of information posted here for you.

[Bee91]

Hi CJR! I'm Brandi. I'm 16 and have been dealing with epilepsy for a little over a year and a half now.

Like you, before I started having seizures, I knew very little about epilepsy other than it had something to do with seizures.

Generalized Epilepsy is just the broad term for epilepsy. Sometimes there can be a focus of the brain where the seizures are originating and other times there isn't.

Like Bernard said, meds do work for a lot of people, but other people choose to take other routes.

[Tillikumtrainer]

sorry that you have to go through this with your daughter. I know its hard at times, but im glad that a parents love can push you to lean as much as you can to help your daughter as she continues to grow up. oh and welcome

[skillefer]

Hi CJR! Welcome to the forum. Feel free to ask any questions. Also, you might want to read the Epilepsy 101 thread. It's good basic information on epilepsy. Also, I'm going to give you one piece of advice that I give all parents. Take a deep breath, and try to stay calm. I remember having seizures (tonic clonics/grandmals) and feeling sooo guilty afterwards because my mom was upset (worried). My dad, he was fantastic. He smiled, and would joke about the seizure later. So, whenever I had a seizure, I'd have the hospital call my dad and not my mom. The problem was...my mom's reaction to the seizures was effecting how I viewed myself. I'm glad you're getting information. Just make sure you try to keep your sense of humor. After all, laughter is good medicine.

[CJR]

Thank you all for your kindness.

We are very open with her so during a recent discussion I asked her if she wanted to try and keep it quiet. (I don't know why I asked since everyone seems to know anyways~LOL) She said, "Mom aren't secrets usually something your ashamed of? I'm not ashamed of having Epilepsy because it's not my fault." It was a really proud Mommy moment.

I just seem to be having a hard time grasping the meaning of all the different types of seizures, what they mean, what I can do help prevent, and most importantly to me what I should be asking of the neurologist when we finally get an appointment. BTW, I'd love to read any blogs you folks might have.

[Bernard]

Try reading these two threads:

Epilepsy 101 - Part FAQ, Part tips and advice

Proactive Prescription for Epilepsy

It should get you started I think.

[brain]

CJR!

Welcome to CWE! I can see that many
folks have offered much advisories and
some links to help you to get a head
start! I've been battling with seizures
since birth - unfortunately, I'm adopted
so not much known about my own
background.

The flip-side of the coin is: You really do
not have to have a "family history" to
have Epilepsy; but when Doctors ask
about it - they are actually looking for
'patterns' - so they know what to treat
and expect (oftentimes many families
and relatives often have the same type
or types of Epilepsy(ies) - which makes
it easier for them (Doctors) to treat the
patient). There are many reasons why
one can develop Epilepsy and there are
also many unknown reasons as well!

[BuckeyeFan]

It sounds like you have been very busy devoting yourself to your daughter recently. In addition to learning a lot about epilepsy, I hope you can take the time to relax here once in awhile and take care of yourself as well. The lounge is just that, a place to relax a little.

Bernard gave you the best starting points. From there you can find multiple areas to explore. If you need to, please feel free to let lose and vent in here as well. They added a padded room just for me.

Welcome to our house.

[Birdbomb]

Welcome CJR

Your daughter sounds like one smart little cookie!

Tell her this is from me!

[CJR]

Thanks so much! Many people wouldn't believe me (she's 5 foot tall and only weighs 58 pounds!) but my daughter can eat a whole package of cookies so I know she'll enjoy the e-cookies!

Thanks to everyone for being so welcoming. I really appreciate all the kindness and the information offered here. Thanks again.

[Meetz1064]

I just wanted to drop in, and say hi.

Everyone here has given you wonderful advice, and this is a wonderful place to be. I will reiterate Skillefer's advice...and that is to stay calm when the seizures happen. It's especially important with kids.

The other thing is that the seizures need to be brought to the attention of her school. And, she can have a plan written for school, not only for her medical care, but if they start to affect her learning, too.

Welcome!

Meetz

[CJR]

Thanks Meetz for the welcome and the advice! Believe me it's greatly appreciated.

Luckily, I'm pretty calm in a crisis. I've had Red Cross First aid and CPR training. I knew basic seizure care. Even as unexpected as her first tonic clonic was I able to stay calm and keep a clear head. My husband has since told me, "For a girl that cries at Hallmark commercials you were sooo calm!" I love surprising him after 14 years of marriage!

I volunteer at the school every week so I've maintained a very open discussion with them (updating them everytime there is a med change or new info) but since this is so new to us (we were unaware of her seizures before the Tonic Clonic on 2/25/0 we haven't gotten to a "written" plan yet. However, I really feel we will need to soon as she has missed some school every week for the past month. Luckily, she is exceptionally bright and hasn't fallen behind in her school work but with continued absences...how long can that last?

Thanks again for the welcome.

[RobinN]

I was rereading your "story" again, and I wanted to tell you that my daughters first EEG was abnormal too. All of the others since have been fine. I think it can put the brain into a tizzy and cause the abnormal brain waves occasionally.

Obviously I am not an expert, I only can share what happened with Rebecca.

I am excited to share our "story" about her neurofeedback therapy. It has kept her seizure free this month. I know of at least one good clinic in NY, if you want the info on it. Rebecca is not taking any medication at this time. She is on an IEP at school, though I see her improving every day.

we told her she probably was having low blood sugar~as that is very normal in our family

this can also cause seizures, as can a deficiency in a vitamin or mineral.

[speber]

I have E myself, and my 9 yr old daughter is just like me in many ways. It scares the hell outta me to think she might develop E...but we roll on somehow.

I'm not sure I could be as calm in the crisis' as you Moms are...my hat's off to you all!

[CJR]

Robin~
Yeah, I'd love any info you have. Although, I live within 1/2 hour drive from Canada so if it's a NYC clinic it might not be an option. After re-reading this thread I am amazed by how much I've learned since those early, SCARY, E. days. And I have great people like you to thank for that!

SPeber~
Remember the days when seeing a kid get sick to their stomach would cause you to gag? I bet you haven't gagged once since you become a parent. It's amazing what parents can get used to, isn't it?

CJ

[RobinN]

Here you go.. Mike is a member and in this thread he mentions where he went for neurofeedback in NY.
http://www.coping-with-epilepsy.com/...perience-2689/

[CJR]

Neurofeedback is so interesting to me. I'm trying to keep an open mind about all routes that would bring seizure control for my daughter. However, if (after we see the Neurologist) Neurofeedback becomes an option I'm afraid I'd have to try and find a center much closer to me as the center mentioned in Mike's experience is over 4 hours away. Thanks for the heads up and for the link to Mike's story. It was a fascinating read.

[paradise survivor]

Aloha CJR, My hat is off to you and all the caretakers out there! E has been far more upsetting to those around me, afterall I am unconcious. I wake up tired and out of it. Sounds like you are doing everything right with your daughter in helping her stand tall. I am 'uncontrolled' by choice ( the druge were too much for me because of the side effects) but I have learned to pay attention to triggers and signs of impending events. I used to have a dog that would jump into my lap and refuse to be put down when an event was imminent. No special training just sensed it. I have two other dogs now and although they have not shown signs of predicting they are my gardians especially if no one else is home. E can be un nerving but once you get the hang of it you will see life goes on but you must be a willing participant! Find the humor, I often say that I have blacked out in some of the best places!!