absence seizures

[klkerber]

Hello All! I am a first time forum-user, but feel like I really need this. My four-year old daughter, Gracie, was diagnosed with Absence epilepsy in January and I feel so overwhelmed by all the medical terms, forms of treatment and the side-effects of the conventional drugs. She is currently taking Ethosuximide (Zarontin) and for a while it seemed to be working, but unfortunately it is not. Our doctor wants to try Lamictal or Depakote, but my husband and I are scared of the possible side-effects caused by both drugs. We feel so helpless and confused as to what to do next. I'm still trying to wrap my brain around the diagnosis and I am reading everything I can to learn about what's happening to my sweet lil' Gracie!

I'm reading the book, Treating Epilepsy Naturally by Patricia Murphy, and am intrigued by the idea that Gracie's epilepsy could be caused by a brain allergy to a certain food/foods. Anyone here experienced this? If so, which foods and how did you figure this out?

My other question is, is the Ketogenic diet worth trying? I've heard, read, and have been told by Gracie's neurologist that this diet is VERY difficult to administer to an "otherwise healthy" child. I would give anything to avoid one of the other conventional drugs, but I am a bit hesitant to "take on" this diet.

Ok, so I thought of another question, have any of you (or your loved ones) tried naturopathy?

Any suggestion on how a mother learns to stop looking at her child and the first thing she thinks is, "My daughter has epilepsy!" As you probably can already tell, I am having a really difficult time coping

 

[Crazy Monkey]

Hiya

Welcome to CWE

You have come to the right place for information, we are all very friendly here. It must be very difficult for you to suddenly find yourself in this situation, we also have a lot of parents on this forum and we all support and help each other.

I am an adult living with absence seizures, I have had absences since I was a kiddie, I have on average 50 a day but can be 4 times that on a bad day (trigger dependent, if I have been naughty and been out drinking) I have tried several meds but nothing has 100% eradicated them. I am now on Lamictal which I have no side effects with, without Lamictal my seizures skyrocket.

I am not able to help you with alternative therapies/diets as the absences themselves have never bothered me that much, so I never looked into them, I just find them more of a pest and a bit embarrassing. But there are several people here who do use alternatives rather then medicating and I am sure they will be along shortly.

If you have any questions about absences, ask away

Take care

Crazy Monkey

 

[Dutch mom]

Welcome here from another mom.

I'm sure Robin or someone else will reply on you question about food allergies etc. and/or will refer you to threads about this subject.

As for the ketogenic diet: yes it works, for my son it works for allmost 5 years and it works better than any med did. But it doesn't work for all kids, about 50-60% of the kids who try the diet long enough do benifit from it (sz free or significant sz reduction.)

Here in the nursery http://www.coping-with-epilepsy.com/forums/f42/prep-ing-4yo-keto-6292/ you'll find a recent thread about kids who just got started on the diet. There is a link in this thread to my son's story on the Matthews Friends website.

To be really honest: the ketogenic diet really is the best thing that ever has happened to my son, who has a malinge child epilepsy syndrome. He has had devestating seizures of all kinds, all day long, EEG showed 90-99% slow wave background pattern of Lennox Gastaut syndrome. He turned in to a regressing 'zombie' thanks to the many seizures and all these AEDs. But I think we would never have started this very, very restricted and unhealthy (yes it is) diet for 'only' asbsence seizures. Or at least would not be still doing the diet after allmost 5 years.

Side effects of meds are very different on people just as how well they help to control szs. My boy didn't react well to ethosuximide (sleepy, doozy, hallucinating) but he didn't expericence any side effects (as far as we've noticed) of Lamictal. Valporate made him constipated after long term use (> 3 yrs) with easy bleeding teeth gums and easy brusing. None of these 3 meds in several combinations with other meds has helped to reduce his szs. THe ketogenic diet did and still does for 90%.

 

[klkerber]

Thank you to Crazy Monkey and Dutch Mom for the support...I know that these seizures are mild compared to all the others, and I really do thank my lucky stars for that, but it really doesn't make it any easier to digest. The one thing that bothers me the most, is when Gracie begs to take her nap...How many four-year olds still nap? More importantly, how many of them cry because it's not quite time yet? Ethosuximide has very few side effects, but fatigue has hit poor Gracie hard! I look forward to hearing from you again, and from others. I am so glad to have found you : -)

 

[tripletdad]

Hang in there klk

My only advice would be to keep a positive attitude, be proactive with your doctor(s) and dont be afraid to get multiple opinions.

I have had E for nearly 32 yrs and have had a fairly normal life. Sure i have seizures, but they are controlled for the most part. I found as my body changed, puberty, adulthood, stress, etc certain meds and lifestyle issues became more or less effective so I had to adapt.

As someone who grew up with E, I will say that my parents were very focussed on me living a normal life and it was a big help fo rme. Sure I had some ackward moments at school growing up but all my friends understood and teh best escuse in the world in HS not to do drugs (i was already on them LOL) or drink and no one gave me any pressure.

IE, I have Epilepsy, Epilepsy doesn't have me.

 

[epileric]

Welcome to the site

I"ll be 50 in less than 2 years & I have to have a nap after my more intense seizures. Even this morning I had a seizure less than an hour after getting up & HAD to go to sleep. Even after waking up I still really wasn't myself. I was actually going to answer your first message earlier but didn't feel like I could communicate what I wanted to say. Watch for mood changes after a seizure. I know I get very moody after some of the more tiring ones. It might be an idea to mark her seizures on a calendar as well as when she naps & when you see her acting more moody than usual.

I don't know what if any anti-epileptic drugs Gracie is on but that might also be causing fatigue or mood changes.

 

[Bernard]

Hi klkerber, welcome to the forum. :hello:

My wife completely eliminated her multiple, daily absence seizures over a decade ago using EEG neurofeedback.

If the ketogenic diet seems too difficult to maintain, you might consider the LGIT or MAD. Some people are trying a GFCF/GARD diet too, but that one has not yet been clinically studied.

Check out the chart linked in my signature for more information on these options.

 

[klkerber]

Thanks, again for all the words of wisdom...I am looking forward to reading up on all the different types of alternative treatments and even more excited about tying them...Thanks for the chart : -)

Hope you all have a wonderful and seizure-free day : -)

 

[skillefer]

Hi klkerber! Welcome to CWE. I started taking depakote when I was 16. For me, it worked great. The only side effect I had was weight gain, and once I outgrew the seizures that the depakote was for, and quit taking it, the weight came off easy. I'd say that the keto diet has enough behind it that it's worth trying....but understand that it's going to be hard for your child. After all, birthday parties tend to be loaded with sugary foods....and when she starts school, you'll need to make sure that her teachers know and that you keep some keto friendly treats for her at school so that she doesn't feel like she's "missing out". The doc probably said that the diet was difficult to maintain because at her age, she's developed a sweet tooth. She knows what the taste of sweet is, and it might be hard for her to transition to keto first. Especially if the rest of the family isn't doing it. After all, kids are curious, and if she's at all like I was as a child, nosy. I used to just randomly search the house. If there was chocolate hidden, I'd find it. So you have to decide if the keto diet is something that you and your family can handle....at least until your daughter is old enough to understand that her food is different because it help her not get sick.

 

[Crazy Monkey]

The one thing that bothers me the most, is when Gracie begs to take her nap...How many four-year olds still nap? More importantly, how many of them cry because it's not quite time yet? Ethosuximide has very few side effects, but fatigue has hit poor Gracie hard! I look forward to hearing from you again, and from others. I am so glad to have found you : -)

My neurologist added Ethosuxumide into my daily routine last year, it didn't last very long, I found that I was tired all of the time and I started forgetting things so I made the decision to go back too Lamictal only. Maybe Gracie is getting a side effect to Ethosuximide

 

[klkerber]

Yes, I definitely think Gracie's fatigue is a side effect of the Ethosuximide! When we first started the drug, my husband and I were under the impression that this would subside once her body got used to the drug...but unfortunately we were wrong.

Those of you taking Lamictal or Depakote, do you often feel fatigued?

You all are probably going to gasped at this, but we fed Gracie fat-free yogurt (with aspartame). She loves yogurt and would eat three cups a day...I never knew how toxic aspartame is for people, especially those with epilepsy. So, I immediately cut this out of her diet and I have actually seen a decrease in the frequency of her seizures...Yeah! I am hopeful that removing other foods will have an impact as well.

I really am grateful to all of you thus far...It's one thing to talk about this with family and friends, but they don't truly understand. It's reassuring for me to be discussing these issues with people who are going through similar life altering situations. Thank you!

 

[epileric]

Not only is aspartame bad but fat can be good if you're on a ketogenic diet.

 

[Crazy Monkey]

I currently take Lamictal and have done for a number of years, I have never really noticed any side effects, I sometimes get a bit drowsy around lunchtime but nothing worth worrying about, but different people react differently to the meds so it can be a bit of a lottery finding one that suits you.

 

[rackelsmom]

Hi klkerber,

I just thought I'd chime in about the diet. We've heard of neuro's telling patients the diet is too hard, my personal opinioin is they just don't like the diet. Yes the diet is a bit tedious, but too hard, not at all! I could tell you of many success stories from other parents at Hopkins from the support group I'm involved in there.

Here is our story in case it may help you. Rachel had onset of epilepsy by way of a 10 hour status. They found a mass in the left side of the brain afterwards that was incorrectly diagnosed as inoperable cancer initially, then our second opinion neuro said it was most likely damage from her protracted status episode. Thus began our medication trials. She failed every med they tried, every mix, every time. It might work for 10 days but I think that was the longest she went between seizures. After six months or so we went to Hopkins to the pedi epi dept. They continued to try things but nothing worked. They sent us to the neurosurgical dept. She had grid surg and a resection less than a year after onset, then a second resection May 07. They helped but didn't stop the sz's.

In Nov 07 we began the diet. It was the best thing we could have done for her. She is doing so much better in every aspect of her life now. She has been sz free since march 08 so over a year and counting! It took some adjusting, but I have to tell you, we go out to eat with her and take her meal with us. No problems. The food can be very tasty and you can prepare way in advance so mornings aren't hectic. This week she came off the final AED (she was on 5 different AED's when she started the diet) so she is med free and doing great!

Please be encouraged, there are options out there. You have come to the right place to look into them!

Blessings,

Ann

 

[klkerber]

Thank you for sharing your story with me, Rakelsmom! I commend Rakel, you and your family for your patience and commitment to find a treatment that works; But most importantly, your strength to get through this! I would otherwise consider myself a very strong person, but this has really beaten me down. Our next course of action is going to be the ellimination diet, where we test for food allergies. Removing the aspartame has made a huge improvement in Gracie's night-time sleeping (She hasn't slept through the night consistently since she was 18 months old!) and in the frequency of her seizures. I've been out of town for the passed three days, and my husband said that he has only seen one seizure!!!!!!! We are also going to take her to a naturopath and to an epileptologist for some other options...I am starting to feel hopeful

 

[rackelsmom]

I am so glad you are being proactive for Gracie! Taking her to an epi is a great route. Fantastic news her szs are reducing! Keep up the good work and keep us posted...

 

[NAS]

Well, I completely understand.

My daughter has a very complex siezure disorder. She is now 6. In the past 3 years since it's onset we have been through all the meds that you listed. She is now on top end doses of Clonazapan (sp??) and Di-Valporate (pill form of valporic acid).

What I can off you is this...

Be aware of the side effects of any med, try to understand how they may show up. Then... Forget them. Watch for any alergic reactions you are warrned about ie. valporic acid rash thing (which we have never experienced).

Isabella,

Is getting ready for first grade right on par with other kids. Now, the greatest issue that we faced as a family was behavior. Specifically, emotional out breaks, Anger, sad, giddy the works. She has bitten care givers, kicked, scratched and cuddled to death sibblings. At first every thing we saw was attributed (buy us) to the meds. Some of this may have been legit side effect BUT our specialist said not so. This leads to may top recomendation.

For all of our family, It's about isabella (my daughter in our case).
Her worst eeg was 156 "events" which include discharges (internal surges that don't show as a physical siezure) in one hour. Included in that was over 50 proper siezures varrying in lenght and intensity. NOW, after all the meds are said and done she is down to about 10 siezures a day. On really good days and best eeg's there was 3 events all under 10 seconds and none manefested as seizures.

I can't even begin with out taking over the thred! lol getting indepth in bell's story. Yes, your daughter has epilepsy. All you can do is make dam sure she is safe, learns, matures, and has time to be a kid. And, Take the steps you need to address NOW! to take care of your self! And the rest of your family too! It sucks, but there is a lot of good that will come of it.

If you want to hear more of our experiences post it or send me a private message.

Scott.

There are others out here that are in the same boat.

 

[NAS]

I have a bad habit of posting before I read all the info.

Isabella is 6 she still naps. In some cases she can sleep 6 hours throughout the day. At first I thought this was the side effects of the meds. Turns out, shortly after she has a higher siezure activity/ discharge activity She is really tired, and emotional. In most case a quick cat nap or a long sleep and she is ready to go. Also, we have recently started using meletonin (sp??) off the shelf stuff at night. We find that her meds being valume get her a little amped. This was under recomendation and approval from her peids, and neurologist. We find now that she sleeps less in the day. That was a direct factor from the siezures during the night.

Scott.