newly diagnosed absence seizures, 4 year old

[AimeeWill]

Hello, I'm new to all this. New to epilepsy. New to asking for help online. I feel incredibly sad, scared, and helpless. My beautiful daughter, turning 5 in November, was diagnosed with absence seizures. She has had both an EEG and MRI. From what we can tell she is having about 5 seizures a day and they last usually 3-5 seconds. We have met with 2 neurologists and both have said that meds are our only treatment option. Part of me wants to believe them. Part of me wants to desperately prove them wrong. I am finding very little information about unmedicated absence seizures or even alternative treatment therapies. I am hoping someone out there has tried and had success with neurofeedback, biofeedback, chiropractic care, nutritional counseling, vitamin supplements, yoga, anything else I haven't even considered to treat absence seizures, specifically. I appreciate any insight you may have. Sincerely, Aimee Will

[Bernard]

Hi Aimee, welcome to the forum.

You are fortunate that your daughter was diagnosed early. I think there are lots of kids who have absence seizures that go undiagnosed (and uncontrolled) until the seizures develop into stronger/worse types (it's a process called kindling).

Stacy (my wife) was successful in completely eliminating her absence seizures using EEG neurofeedback and a regimen of regular sleep and a pseudo-LGIT diet.

I highly recommend trying EEG neurofeedback if you can find an experienced practioner in your area. In my wife's case, and in most of the cases that I am aware of, EEG neurofeedback takes time to work. It doesn't seem like anything is happening for 4-5 months and then, it's like someone turned on a light switch - very noticable results appear rapidly.

When my wife tried it, I did not know what I know now. We almost quit her treatments in the 3rd month because we weren't seeing any results and it was expensive. But, we persevered with it (mostly because Stacy refused to take drugs at the time and we weren't aware of any other viable options) and we are very glad that we did.

[Birdbomb]

Welcome Aimee Will

We have met with 2 neurologists and both have said that meds are our only treatment option

Hmmm...only treatment option Huh? More like the only treatment option they are willing to suggest.

Have you heard of the Ketogenic diet? 1/3 of the children who follow this diet become seizure free and stay that way. It's very restrictive and must be begun in a hospital setting.

I have a Ketogenic Diet Coach on my website I can direct you to if you like, Fay, will be more than happy to speak to you. Just send me a PM and I'll give you her email address

Do they know what caused your daughter's epilepsy? Has she had it from birth?

Being scared is natural. It's because of the unknown. Epilepsy is a life altering disorder but we choose how we will deal with it. Hang in there, the more you know the better you'll feel!

[RobinN]

My daughters started at the age of 14, she will be 16 on Nov. 17th.
The only truth to the label of Epilepsy is that your daughter has had more than two unprovoked seizures. Unfortunately it is up to you now to figure out why. Most doctors I have found will give you the med and send you on your way until it no longer works for her. There are many suggestions here and trails to follow to learn more about the disorder.

One thing I learned and am starting to understand, is that everyone has a seizure threshold. Our daughters just happen to be lower than most. To find out what is triggering them, I have kept a journal of the events on a calendar. Changes in diet, and environment are a good place to start.

You have found yourself in a house full of very compassionate folks that will stand by you during this journey of educating yourself on the subject. Ask away.. but be prepared to read a lot.

[Zoe]

We have met with 2 neurologists and both have said that meds are our only treatment option. Part of me wants to believe them.

Birdy picked right up on the neuros. There are other things to consider besides drugs and\or surgery, the neuros just don't want to tell you. I had uncontrolled seizures for many years. Drugs and brain surgery failed. I finally got them under control using a combination of strategies, behavior modification, diet changes, vitamins and neurofeedback.
Epilepsy is a word, not a disease, and all it means is that someone has seizures.
There are many causes of seizures and it doesn't sound like your neuros have tried much to figure it out. The function of the drugs is only to suppress seizures and the side effects can be serious, including leading to cognitive impairment. There are some options you can explore though do know that the exact cause of seizures is often not known.
If she is only having absence seizures you may want to consider if the risks of taking drugs outweigh the benefits. Not all seizure disorders require medication.
You may want to do more searching and have your daughter get some further evaluations to try and discover what are causing her seizures. One easily overlooked cause is B6 dependent seizures, and we have a member in this forum who has seizures because he has an inborn error in metabolism involving B6. There are literally hundreds of inborn errors of metabolism which have seizures as a symptom. You may want to have your child evaluated by a pediatric physician specializing in metablolic disorders.
This link is to a laboratory that does blood testing.
http://www.carbonbased.com/modules/n...php?storyid=90
The owner's daughter developed very frequent seizures and he was able to help figure out her problem. From the web page you can find an article about it and may also contact them as they should have information on some things that may be causing your daughter's absence seizures.
Also, you can do a google search on "absence seizures" "children" "causes" which will give you more information to exlpore.
These are some other easily overlooked causes of seizures in children:
Vitamin D deficiency. I wrote an article on it and you may want to have your daughter evaluated for this. Information on getting the proper test is included in the article:

http://www.indiana.edu/~pietsch/zoerickets.html

Celiac Disease\Gluten Intolerance. This is becoming more recognized as a cause of seizures and can be treated with a gluten free diet. Absence seizures are a symptom of gluten intolerance and a good pediatrician should be able to test for this.
http://www.aafp.org/afp/980301ap/pruessn.html
Since that article was written it is now thought that gluten intolerance is quite common.
This link is to another group for folks who have seizures:
http://health.groups.yahoo.com/group/epilepsycured/
If you join, send an email to Arnold Gore. He had seizures as a child and overcame them when he realized he needed B vitamins. You should find other parents to talk with there as well.
Don't let the epilepsy label intimidate you. All it does is say your daughter is having seizures. But it doesn't tell you why, if it is from gluten or lactose intolerance, a vitamin deficiency or some other cause. Children do often outgrow their seizures too. They are not necessasarily a permant condition. Do a lot of information searching and ask a lot of questions. You may want to try putting your daughter on a strict lactose and gluten free diet, with no MSG or artificial sweeteners for a month and see if she shows any improvement.
Welcome to our crowd. You'll find a lot of support here too!
Please see my post on Long-QT, a heart rhythm disorder easily misdiagnosed as epilepsy!!!!

[speber]

I know you're really freaked out right now...but hang in there...you're among friends!

There are not only options, but many here who have experience with them firsthand and love to help others!

Peace!

[JenM]

Aimee...my daughter was 5 when diagnosed with absence seizures a year ago and she may have been experiencing little staring spells for awhile, but these "blinks without closing my eyes" became evident to her as she was beginning to read and would lose her place. Her medication controlled her blackouts well until this summer. We now have had to give the head's up to her classroom & PE teachers, school nurse, soccer coach and others. Previously her blackouts were while she was sitting and reading. Since they have increased in length from a fraction of a second to 1-2 seconds...it impacts others. She has had a few instances of walking with her classmates down the hall and then just stopping for a long moment. In that time, kids have bumped in to her and she has fallen. Up to now it hasn't been much of a health safety issue, but during a soccer game, she just stopped chasing the ball as everyone ran by. She wasn't bumped...but our goal is to get the frequency of these episodes back to once a month instead of multiple times a day.

Thanks Zoe for this diet info...it may explain a lot regarding the behavior of my daughter. I have a neighbor (in the Washington DC area) who conducts neurofeedback and I felt it was a possible option when we first saw the neurologist from Children's Hospital. Although he was open to the idea of neurofeedback, he said it would not help her because that tends to help those with brain surface disturbances and her was deeper in the core. (I'm not an expert and others of you on this site may have a better understanding/experience than I)

As Aimee asked, we too wondered if medication was necessary for absence seizures if it was a condition she might out-grow. The doctor convinced us that medication was necessary to get her brain to fire in a systematic pattern and for neighboring cells to learn how to operate properly (again, I may be not stating this exactly right, but he had us convinced).

She was taken off of Zarontin after 4 months because the episodes became a daily occurrence. She did well on a very low dose of Depakote (virtually no blackouts) for 8 months with a bit of weight gain which is a common side effect. We doubled the dose to match her new weight and just 2 months later doubled it again because she was having up to 4 staring spells a day that had increased in length. Now she is back to having only 1 or 2 blackouts a week...and I'm trying to figure out what triggers them. However...she is extremely tired and very irritable. The info links that Zoe posted about calcium/vitamin D deficiency, gluten sensitivity and other diet connections make a lot of sense and could explain a many of her side effects.

We remain very hopeful as a family and my daughter and son have recently e-mailed many friends/family about her condition as they raise money for the November VA Epilepsy Foundation Stroll. Most had no idea she had this condition and are very supportive. We have learned 2.5 million American have epilepsy/seizure disorders--more than the combined number of folks with Parkinson's, Cerebral Palsy, Multiple Sclerosis and Muscular Dystrophy. You are not alone.

[brain]

Jen!

Welcome to CWE! I'm in touch with
VA EFA! They're on myspace if you
clicked on my Head Storms link below,
you'll see their Ready Set Walk they've
got set up for this year!

Actually nearly 5 million Americans have
some type of Epilepsy/Seizure Disorder
and possibility even more that haven't
been diagnosed properly! Scary!

I've had Petit Mal - which later became
Absence and now they're telling me I
also have Atypical Absence as well all
in my life. But the meds I'm on now
controls it pretty good.

But I agree with everyone that you're
very fortunate to have that caught at
a very early age! I was accused of
"daydreaming", "not paying attention",
"mind wandering", yadda, yadda, yadda.
And I got punished for it too and had no
idea what I did wrong!



But the WONDERFUL THING IS, Neurology
has PROGRESSED! Catching things at an
early age has to be a great thing!

There are so many options out there that I
would have to quote what Bernard would say:

Bernard's famous quote:

"The well has not run dry ..."

[Bernard]

... I have a neighbor (in the Washington DC area) who conducts neurofeedback and I felt it was a possible option when we first saw the neurologist from Children's Hospital. Although he was open to the idea of neurofeedback, he said it would not help her because that tends to help those with brain surface disturbances and her was deeper in the core. (I'm not an expert and others of you on this site may have a better understanding/experience than I)

That is incorrect IMO. EEG neurofeedback uses leads on the scalp which measure brain activity on the surface, but the feedback training affects the whole brain.

Think of it like this - if the leads measure the surface events and the surface events are secondary measurements of primary events deep in the brain, in order for the neurofeedback patient to change the surface events being measured, they need to alter the activity deep in the brain which causes the surface events.

The leads on the head are merely recording devices. The real magic of neurofeedback is that the patient learns how to control/manage their brain function (whether it is deep or shallow).

As Aimee asked, we too wondered if medication was necessary for absence seizures if it was a condition she might out-grow. The doctor convinced us that medication was necessary to get her brain to fire in a systematic pattern and for neighboring cells to learn how to operate properly (again, I may be not stating this exactly right, but he had us convinced).

Medication will dampen the misfirings. It offers the brain the possibility to learn new non-epileptiform patterns for operation, but it doesn't actually cause the brain to do so. This is why, IMO, success rates for people coming off meds after having full seizure control for 2 full years run at about 40%.

EEG neurofeedback is a system that allows patients to actively develop new patterns for proper operation.

[AimeeWill]

First of all, thanks to everyone that posted a reply. Your advice, words of encouragement, and support have helped me feel like I can breathe again. Does that make sense? We have decided to put our daughter on a gluten and dairy free diet and will be meeting with a naturopath for nutritional counseling this week. We, also, found a great children's multivitamin that is high in Omega 3's, B vitamins, and magnesium. Plus, Stella actually likes it and thinks it's a special treat! We (finally!) found a neurofeedback clinic that has had success treating children with absence seizures. The clinic is 2 hours away from us but we are going to make it work. I hope it works. That's where I am right now.....hopeful. It feels good.
Aimee

[Bernard]

Wow, now that's a plan!

We drive an hour each way for Stacy's neurofeedback sessions. It's worth it.

[RobinN]

Aimee - what a great plan you have made. Hopeful is a good place to be. I wish you all the best.

[Zoe]

Aimee,
Please do post on how your plan does or does not work. I had to try a lot of things learning to get my seizures under control, and not everything worked! So it was much trial and error so I got in the habit of analyzing what didn't work and using that to develop other strategies.
Try some net searching on "neurofeedback" "absence seizures". That should give you more information. The neurofeeback can have the effect of teaching the nervous system how to alter brain blood flow and metabolism to overcome whatever disturbance is triggering her seizures. It is crucial though to identify and treat the causes if they can be found to reduce the risk of re-developing the problem in the future.
There's a pretty good cook book published by Rodale Press called "The Allergy Self-Help Cook Book" by Marjorie Hurt Jones, R.N. I see inexpensive used copies around in bookstores all the time.
She has a good section on gluten free flours. Also she gives instructions on how to boil and then simmer flax seeds to make an egg substitute. The mixture has the consitency of egg white and I found this also was a great substitute for oil\fat in baking bread. If you are going with the gluten free diet, you can pretty easily make flour for yourself in a small electric coffee grinder. Grind about 1/3 to 1/2 cup of beans, buckwheat, or whatever you use at a time and just run it through your flour sifter to get out any fragments. For starters, this is a quick and easy recipe for a round pancake like bread. Stella might think this "special" round bread is pretty neat too. The beans, buckwheat and rice for flours you can usually get at a health food store that carries bulk items:

Prepare a skillet as you would for making hot cakes.
Prepare and set aside:
2 cups liquid. May be a tea, such as peppermint or any milk substitute.
Sift together and set aside:
1/4 cup white bean flour
1 cup brown rice flour
1/4 cup raw buckwheat flour
1/4 cup chick pea [garbonzo] bean flour
1/4 tsp salt
1/2 Tblspn cinnamon
1 tsp gluten free baking powder
1/4 tsp baking soda

In a medium bowl add:
1 lg egg or egg substitute
2 Tblspns, of flax oil or the flax egg substitute mentioned above.

Add 1/2 cup of the liquid and blend on low spead. Slowly blend in the flour mixture adding more liquid until you have a thick batter. Prepare as you would hot cakes.
When the batter is thick these round breads keep well in the refrigerator. They also fit in the toaster and can be used to make round sandwiches. These also freeze well.

[AimeeWill]

Thanks, Zoe, for all your helpful information. We are 2 weeks into our gluten and dairy free diet. It was extremely challenging in the beginning but we are figuring things out. Our naturopath has put Stella on Omega 3 DHA, probiotics (from prophylactic antibiotics administered daily for 3 years for ureter reflux), a multi-vitamin, and 2 Bach flowers. I was hestitant at first to make so many changes at the same time but was certain things couldn't get worse. However, I feel the frequency of her seizures has notably increased. Does anyone have any insight as to what may be going on? How long does it take (ballpark) for dietary changes to make a noticeable difference? Is it possible that all these changes are stressing her system therefore causing more seizures? I do feel confident that we can get control of her seizures without meds but am starting to realize what a lengthy and tiring process this will be.

We had a consult with the neurofeedback clinic. The technician had laryngitis so it was really frustrating talking to her. I wish she would have just rescheduled since it was a 4 hour roundtrip drive. My husband is a professor of neuroscience and I felt he knew more than she did. Maybe it was just her inability to talk. I did get a call from our health insurance saying neurofeedback is covered 80% on our plan so it's still something we are seriously considering.

My daughter, turning 5 next week, has been saying that when she has a seizure there are black tassles in her eyes. I asked her to draw a picture of these tassles and they look like, for lack of a better description, a big blob. I feel most of the things I've read about childhood absence seizures state the child doesn't even know they are having them. My daughter seems very aware that she just finished having an episode. I would like to hear if other children have similar experiences.

Finally, does anyone have a great gluten/dairy free cake and frosting recipe?

Thanks,
Aimee

[Bernard]

However, I feel the frequency of her seizures has notably increased. Does anyone have any insight as to what may be going on?

Is it possible that all the attention and changes might be stressing her out?

How long does it take (ballpark) for dietary changes to make a noticeable difference?

I think that is going to be different for every person depending upon a lot of factors (like how close the new diet is to the old one, how fast one's system adapts to change, metabolism, etc.)

Is it possible that all these changes are stressing her system therefore causing more seizures?

I was thinking that the changes might be more of a psychological factor. The vitamins and DHA/O3 shouldn't increase seizures AFAIK.

I did get a call from our health insurance saying neurofeedback is covered 80% on our plan so it's still something we are seriously considering.

Awesome!

My daughter seems very aware that she just finished having an episode.

Conscious awareness and visual hallucinations woudl be indicative of simple partial seizures (sensory seizures). Is it possible that she is having simple partial seizures *and* absence seizures?