Absence Seizures, Keppra question,etc.

[smckenn]

Hi I'm new here and I have some questions/concerns.

Here's a little background on my daughter:
My daughter Angelina is 6 years old. She started having "febrile" seizures at 10months old. I put the febrile in quotes because she's had upwards of 15 supposed febrile seizures between 10 months and 4yrs when they say it's only a few normally. Her last "febrile" seizure was more like a grand mal seizure (lasted 45 minutes in the ER and she had to have medication to pull her out of it...which depressed her breathing so much she stopped and had to be put on a ventilator). SCARY. That was the last big seizure.

Though--a month and a half ago she was diagnosed with having absence seizures. We believe she started the absence seizures around 4 but we thought she was just daydreaming or not paying attention. Anyhow--- now that we have a diagnosis...I'm still concerned. Being that she had all these seizures as a toddler and had that grand mal at 4...we're still afraid it could be more than just absence alone. She was having upwards of 25 absence seizures a day.

She was put on Keppra but I'm also having concerns about the medication. Initially she was started at 3ml twice a day. Then 2 weeks ago the neurologist upped the dosage to 4ml twice a day since she was still having about 15 seizures a day. My concern is...over the last couple days we've really been watching her and the seizures appear to last longer than they used to (went from 5-10 secs to about 15-25 secs sometimes). She also gets really disoriented after she has one and literally walks in circles. They also seem to be increasing now in numbers after they had decreased for a couple weeks. Her moods are outrageous. She cries at the drop of a hat, is very argumentative, and has been really mean to her baby sister. This is extremely out of character for her (normally very well behaved, happy, loving child). I called the dr today but have not heard back yet...just wanted a little feedback from parents going through the same thing.

My final question is I have a friend who suggested doing a different diet (similar to Atkins) and possibly doing detox clay baths (like they do for children with autism). Anyone have any ideas/info on that?

Thank you!!! sorry it was so long...just had to get it all out.

 

[Game_Maker]

So, the keppra concerns me, i don't know too much about the doses for smaller children, but I'm 22 now and about 3 years ago I tried out keppra and it was not for me, I had some pretty crazy and outrageous moods also on it, even though for me it controlled my seizures (i also have absence seizures) at least it did as far as I can remember, but I went from being a really nice kid to a very angry one and I switched meds really quick because at least to me I didn't feel good on it. I just know keppra was very scary for me and my family.

 

[Nakamova]

Hi smckenn, welcome to CWE!

You are doing the right thing to keep close observation on your daughter's seizures, and how her symptoms respond to the Keppra. There can be an adjustment period before a medication works optimally, but if things continue to change for the worse, definitely let the neurologist know. And definitely bring up trying the Modified Atkins Diet. It has proven success in helping reduce or control seizures, and can be especially successful with absence seizures. More info here: http://www.atkinsforseizures.com/

Best,
Nakamova

 

[smckenn]

Thank you for the responses. Her neurologist called back and told me to increase her Keppra to now 5ml twice daily for the next 2 weeks. They claim the behavior and seeming increase in severity of the seizures is normal and that she just needed to increase the dose. They said if that didn't work in 2 weeks to call back and they would probably change the medication she is on.

I guess I'll wait 2 weeks but I'm hoping to have my sweet 6 year old back and have a decrease in the seizures.

 

[acpollard2010]

Seizures can bring that on with not knowing what to do have no control.im on keppra and i does make your behavior change a lot uae to be nicest guy now oeople think im unsensitive ass!

 

[epileric]

If it's the ketogenic diet you want to try please do it only under medical supervision. There is someone else on this site whose child uses that diet but it can be dangerous if not balanced very carefully. In my opinion you should consult a medical dietician before implementing any diet.

As far as a detox bath goes, there has been no scientific evidence that they work. I once read a doctor saying online that in medical books you will never find a detox chapter so I checked my medical books & he was right. The only way our body detoxes is through the liver & kidneys.

A group of over 300 young UK scientists and engineers who investigated the evidence behind claims made for products and diets, have started a public awareness campaign by publishing a dossier that shows the word "detox" has no meaning outside of the clinical treatment of drug addiction and poisoning.

Called the "Detox Dossier", the report describes the findings of the investigation by the Voice of Young Science (VoYS) network of over 300 early career researchers. They reviewed about 15 products, ranging from bottled water to face scrub, and found that many detox claims were "meaningless", said a BBC report.

It follows an earlier report titled "There Goes The Science Bit..." published with the charity Sense About Science about a year ago, where the authors exposed "dodgy" science claims by phoning manufacturers and asking questions about their products. After the first report was published the authors received offers of help and lots of examples where the word "detox" was used, and this led to the latest investigation.

According to a BBC report, the advertising regulators said they would look at such issues on a case by case basis. The Advertising Standards Authority said:

"If a product is making claims not substantiated by the evidence submitted by the company we would challenge that."

The Detox Dossier investigators found that:

-No two companies had the same definition for "detox".

-The word "detox" was used to promote a range of things from foot patches to hair straighteners, without consistent explanations of what the word means.

-In most cases no evidence was presented to back up the "detox" claims on products.

-In most cases, producers and retailers who the young scientists got in touch with were forced to admit that they were using the word "detox" instead of mundane things like "cleaning" or "brushing".

-The prices ranged from about 2 pounds for a detox drink to over 36 pounds for detox bath products.

Debunking The Detox Myth

 

[smckenn]

Thank you for the info and responses.

 

[Staceypt]

Hi!

My son is 7 and just started with what we thought were absence seizures about 2-3 months ago. He was also put on Keppra. What you are describing sounds like what happened with us. Once he was on the Keppra his seizures seemed to be a bit longer and a little different than they were before. After catching a few more of them on EEGs and conferring with a large group of specialist they have decided they think he is actually having partial seizures that were just presenting so quickly that they looked like absence seizures. We too saw a lot of difference in our son's behavior once on Keppra. I discussed my concerns with the neurologist and they said that Keppra can actually reduce your B6 levels and that can contribute to the lousy moods. We started my son on B6 vitamins (100mg) once a day and the change in his attitute is amazing -- my sweet little guy is back and it is wonderful. I would definitely ask your neuro about the B6.

My neuro said it would take 7-10 days to see the full effect on the seizures each time we upped his Keppra. And before the B6 his mood would stabilize after he had been on a dose for about 2 weeks.

We got to the max dose of Keppra last week and he is still having seizures, so we started on Trileptal as well. Hoping that will work for him

Good luck!

 

[Renogal]

My 10 year old was originally on Keppra for her absence seizures, and she also had SEVERE issues with mood during the phase going on and off the medicines. I know another mom whose daughter also has seizures, and her 6 year old has experienced the same mood issues during the same period (going on or off Keppra). Unfortunately, I hate to say this.... the doctor is right... you will get to the "sweet" spot eventually and the moods will stabilize however you have to deal with them both going off and one the medicine. My daughter also takes a b complex (also at the direction of the doctor) and that could have benefitted the situation. My daughter ultimately had to transition to Ethosuximide 250mg twice, 2x daily. However now after about 9 months, and getting hit in the head by a stray soccer ball last week she is starting to once again have seizures daily. Good luck! Keppra worked for us, for a while once you get past the moods!

 

[smckenn]

Thanks so much. They added Lamictal to her medications 25mg twice a day and the keppra 5ml twice a day...she is finally not having seizures anymore...or at least not noticeable. Her moods have leveled out as well. She's still moodier than she used to be pre-meds...but she is MUCH better than she was initially with the keppra.

 

[stilldancing_98]

My boy has had epilepsy since he was born. Myocloncic seizures, And I have had them since I was 10. From Frebrile. Chicken pox. And just like you said Keppra is a stablizer. Bulllllll! My mother said to the doctors that I would space out and I just look cute. I take keppra and it's keppra and I would never put my son on it. You will be fine. You sound strong. And that you decided to own this situation. Get to an epileptologist if you can. thanks Teresa

 

[indymom]

has any tried any non medication treatment

My daughter was recently diagnosed with absence seizures and i wanted to know if any has any advice on any non medicinal treatments. I have read about changing her diet and removing gluten....just lost and honestly all of the side effects I have read of the medicines have me scared

 

[Ker-stee]

Just to stand up for keppra, I've not had any side effects while I've been on it and have been 9 months seeizure free

 

[Nakamova]

indymom, you might want to check out this thread:
http://www.coping-with-epilepsy.com/forums/f32/neurofeedback-rebeccas-story-2733/

 

[stilldancing_98]

I'm sorry, I totally understand how you feel about your daughter. Nothing is perfect. We are blessed in a time where we have so much more to help. I have been on every med. And keppra is the only one that works for me. Plus a few more. I have five types of seizures. Life gets really tough when you are deciding what meds to put into somebody elses mouth though. Epilepsy for him is totally different for me. Research everything. Talk to everybody you know. I know you will do great. And PM me if you need to. Blessings to you Teresa