Nice to Meet you All

[Jrsbeauty]

My name is JoAnn and I am raising my 13 yr old neice who has absence seizures (thats what i believe). I've finally after 2 yrs of this gotten a dr to listen and start the diagnose passage for us. She was perscribed Ativan to stop them til she gets into speacialist. Ativan sedates her and I cant keep her that way nor can she function in morning. I am hoping to get answers and ideas from this group!!! I am very excited to join and see what I learn and discover!!! I am very interested in alternative treatments, herbal anything that may help us control this!!!
Thank you for taking the time to read this
XOXO

 

[epileric]

Welcome JoAnn

I have a 2nd cousin in N. California (Marin County) named Cheyenne. I've got to say I love Marin.

This is a great place for support, if it regards epilepsy you're sure to find someone else here that is in your situation. This link might give you a better idea of what you're dealing with. http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

I was born with epilepsy & have been taking pills for 46 of my 49 years so I think it's great that you're looking for alternatives while she's so young. For now you should ask your doctor if she can take all of the ativan before bed without disrupting the levels in her blood, it's what my doctor wants me to do with neurontin. I also use the herb valerian to make tea before bed if my seizures seem to getting "edgy".

Sadly all anti-epileptic drugs have a sedating side-effect. It's just a matter of finding what drugs side-effects bother her the least.

Here's a list of alternative treatments http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments I know quite a few of them have been tried by various members here. I personally would like to try the neurofeedback as I've heard good things about it.

Meanwhile make yourself at home, check out the nooks & crannies and everyone else should be by to say "hi" in a while.

 

[Bernard]

Hi Jrsbeauty, welcome to the forum. :hello:

First off, be aware that prolonged use of ativan can lead to addiction. It's really supposed to be an emergency drug for status epilepticus.

http://www.drugs.com/ativan.html

My wife used to have multiple, daily absence seizures. She would get them especially any time that she got excited about something - when speaking, reading or thinking about something she really liked or disliked.

She hasn't had any in over a decade since she used EEG neurofeedback the first time. I highly recommend it.

Some food for thought: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

 

[Nakamova]

Hi jrsbeauty and welcome!

I hope your niece gets in to see a neurologist soon. As you can tell, Ativan isn't really the right drug for her. If you can't get an appointment soon, ask her regular doctor to look at alternatives that might work better.

Best,
Nakamova

 

[Meetz1064]

I have

to go along with Mr B on the neurofeedback, and Eric on the valerian tea. But, I also want to chime in about the possibilities of nutritional changes and an E journal. RobinN's the queen of nutrition around here, but if you check out the different diets (GARD, ketogenic, LGIT, Modified Atkins) you'll find that there is the possibility that one or the other can help your niece.

Personally, I had been using the GARD for quite some time, and now, I have to use a stricter form of it because I have been diagnosed as a celiac patient. (YIPPEE). And my seizures have been very well controlled, particularly my tonic clonics, for which I am forever grateful. Yes, I am still on meds, and I probably will be the rest of my life--I have FOUR types of E. But hopefully at some point, once my celiac issues are completely under control, I will be able to reduce the doses of some of these meds. *crossing fingers*

I mentioned an E journal earlier, and it would be quite wise to start one if you haven't already. E journals are great for helping track nutrition, but also helping to identify triggers, too, and they are a great aid for your doctor. Let me know if you're interested in this, I have a great list of things to put in it--it's amazing the things that can trigger seizures---including a woman's monthly cycles, and food (of all things!)

Also, in order for your niece to be properly diagnosed, she will have to go through an EEG--it would be better if it were at least a 24 hour EEG, if not 48 hours. That way, if there are days that she doesn't have any of the seizures, there will be more of a likelihood that the seizures will be caught. EEGs are a "snapshot in time" if you will, of what's going on in your brain AT THAT SPECIFIC TIME that you are hooked up to the machine. Those 20 minute and 1 hour EEGs don't usually show much of anything....and tend to show a perfectly NORMAL EEG. (That can happen on the others, too---it happened to me for over 40 years, but I had a hundred eyewitness accounts, including doctors and nurses, that I had E, at least.)

Another test that your niece will likely have is an MRI. It's nothing to be afraid of--just annoying, and loud. All the MRI does is to check for physical abnormalities within the brain to see if there is a physical cause for the seizures. By that, I mean, something such as a scar, lesion, or tumor--or anything along that line.

Welcome to CWE, by the way. Mr B has built us an AWESOME home here. Feel free to check out all the nooks and crannies, such as the Library and the Kitchen, where you will find tons of information. The Padded Room is great for venting when you need to, and trust me, we've all been there at least a time or two.

So kick up your feet and hang out, make a bunch of new friends, and gain a great support system. Learn about E, how to be proactive, and more.

Take care.

Meetz
:rock:

PS. Sorry if that post was a bit long and overwhelming.......

 

[Loudmouth]

Epileric-I am on neurontin (gabapentin) and my Neuro has me split it into 4 separate doses as aparrently it has a very short half-life. Surely if you take it all in one go at bedtime, by about 20 hrs later, there won't be enough in your bloodstream to prevent seizures?! This is what I've been told, I've been taking it like this for 2 years or more now....Does your Neuro know something mine doesnt? Taking it in 4 doses is trying my patience as the time of the last one is at 1am. (6 hrs apart) so I dont get more than 6 hrs sleep a night (have to be up at 7am for next dose and school run), so I'm having to catch a nap during the day.

 

[epileric]

Thanks so much for mentioning that LM. When my doctor gave me instructions he told me to start taking it at night because of the side-effects then to up the dosage (I'd assumed to take the 2nd dose in the morn) but the pharmacists (chemist in the UK) directions told me to take them both at night.

It could be the chemist couldn't understand the instructions.... we all know about doctors handwriting.

I just left a message at my docs office, I'll keep you updated when I get a call back.

 

[Jrsbeauty]

Thank you all so much!!! I will be looking up and researching all your suggestions!!
XOXO

 

[Loudmouth]

Jrsbeauty, my 11 year old daughter also has epilepsy, absence seizures with the occasional TC. She is not on medication as I felt in her case at present the ethosuxamide they were wanting to give her the risks and side effects outweighed the benefits. We are controlling her seizures through diet, by following a gluten-free diet and also by eliminating all artificial sweeteners, especially aspartame. Touch wood, she hasn't had a TC seizure since the end of June, and her absence seizures have lessened from up to 5 a day to 2-3 a WEEK since that time. How does your niece manage at school? Good Luck with trying to get some answers.

Epileric, please let me know what your doc says, as even being able to 'fiddle' with my dosage times so I can get a full night's sleep would be appreciated, if I have the info to go to my GP with...

 

[RobinN]

Welcome Jrsbeauty -
When my daughter began taking meds, both of our lives began to spiral downward. After learning about alternative therapies, her quality of life began to improve.

We began by making nutritional changes, because it was free, and seemed logical to me at the time. In addition we began neurofeedback which supported the nutrition and supplements that we were experimenting with. Over time, I have learned more about how nutrition plays a role in many neurological disorders.

I am not a doctor and but I can tell you I wish we had not taken drugs as a first choice of action. I have proof that they made my daughters seizures worse. Seizures are a sign of an underlying problem. Seizures are a symptom of something out of sorts in the body. Figuring that out is your best bet over all. IMO

Some issues can be corrected, others need to be managed. Conventional doctors do not have all the tools needed to figure this disorder out. Their job is to manage and contain it. My job is to figure out why it is happening and heal my daughter from the inside out. Her doctors have been impressed with the outcome.

 

[epileric]

Epileric, please let me know what your doc says, as even being able to 'fiddle' with my dosage times so I can get a full night's sleep would be appreciated, if I have the info to go to my GP with...

Well, I just got off the phone with my neuro & what he said was that because it's a relatively small dosage it's not a big deal to take 600mg at once. He did say that to get the maximum benefit it would be best to take the doses separately.

 

[Dutch mom]

Hi JrsBeauty,

Welcome on CWE.

My 10-year old (special needs) son has a bad childhood epilepsy syndome which causes him to have all types of seizures including absence seizures. In his case those are definitely not his biggest problem.

We've tried to control his seizures in the past with ethosuximinde (twice, both Ethymal and Zarontin in different combinations of meds, together with other AEDs and benzo's.)
Ethosuximide is considered being THE drug for absence seizures. Unfortunally it didnt help my son, there were some side effects but these were acceptable, or would have been if the drug had worked.

After trying 10 different meds my son's epilepsy was called "intractable and med resistant." So at least we decided to try the ketogenic diet. And the diet works for him, better than any med did! He's a keto kid for over 5 years now, med free and with significant seizure reduction (> 80%) and an improved EEG (>70%)

But... the ketogenic diet is NOT an easy diet at all. It's a very restricitve diet, for kids as well as parents and other caregivers, and it's unhealthy. The ketogenic diet definately is worth a try for kids who suffer from severe epilepsy and mental retardation when first choice meds don't help.
But -my opinion- the diet is not a first choice for 'only' absences seizures. Being a parent I would prefer giving my son ethosuximde instead of having to live with this 'horrible' diet to control absences seizures. I do know many children who use Ethymal succesfully, cases in which the positive effect is worth the side effects.
The 'magic diet' has rescued my boy and I'm very gratefull for that. I am an enthousiastic ambassador for the ketogenic diet. But to be honest: if it was't the only working option, it would not have been my choice for him.

 

[Loudmouth]

I understand what you are saying about the Keto diet, My daughter is on a gluten free diet as is the whole family due to my 7 yr old son having coeliac disease, and I found it easier to cook gluten-free for the whole family. A pleasant side-effect of the GF diet happens to be a massive reduction in her seizures and mine also. We cut out the sweeteners about a year before that, as I had noticed it was one of MY seizure triggers. The epilepsy that my Nan, me and my daughter have will be lifelong, and we beleive it will worsen in her early twenties, as did both my nan's and mine. At that point, she will have to be on meds for the rest of her life, so while her seizures are still 'fairly mild' I came to the decision with her neuro that it would be best to wait as long as possible before giving meds. In the meantime, I have tried to control her seizures as best as possible through eliminating triggers and diet. For us it has helped, she has been 3 months free from TC seizures and her absence seizures have dropped considerably as well.