Trying to find help for my niece

[havefaith]

Hello Everyone,

Long story short, my niece, who is 14 had a Grand Mal siezure 6 years ago, she was doing fine on medication up until about a year ago, she has not had any more Grand Mals but she does have partial complex siezures. The Dr.'s have her on Keppra and Topomax, she is at the highest dose she can be on and she still has a few siezures a week.

My sister is just so torn up, the neuro suggested it might be time to think about surgery.

My question is, aren't there a bunch of other mediciations she could possibly try first? Why wouldn't the neuro want to try different medications before jumping into brain surgery???

Also, have any of you had the surgery and if so, are you siezure free now?

I just wish there was something I could do for my niece AND my sister but I don't know what that is....

I appreciate any info you may have.

Signed,
Havefaith...

 

[Nakamova]

Hi Havefaith, welcome to CWE!

There are a number of different meds to try (like Lamictal for instance, which I'm on). Your niece's neurologist should be able to provide a rundown on the options. It's possible that there is a particular trigger that may be responsible for the change in your niece's seizures. Since she is 14, it could be hormonal, or it could also be related to changes in metabolism (since she's a teenager). If she can she should try and keep a journal recording when the seizures occur, how long and how often. Also important to track are details of diet, nutrition, metabolism, hydration, sleep, hormones, exercise, activities, and anything else that might present as a stressor. It's worth doing to see if she can identify any seizure triggers, and then avoid them to help keep her seizures down.

There are people here who have also had success using diet and/or neurofeedback to reduce seizures. You can search for more information about these approaches here, and also should suggest discussing them with your niece's doctors. Surgery is an option, but there's no guarantee that it will eliminate all seizures. It's more likely to succeed if the seizures are originating from a single, easily-isolated area in the brain.

Best,
Nakamova

 

[epileric]

Welcome Havefaith

I also have partial seizures, usually about 1 a day but more recently. I agree that you should try every last possibility before resorting to surgery.

My experience is that doctors are too quick to do surgery. Many times I was offered surgery before they even knew what was causing my seizures. If ever you do consider it for your niece make sure to ask to see what the previous statistics are on operations on this specific type of epilepsy. Also ask how long after have they followed up, many people seem to have trouble 6 months (or longer) after the operation.

There are numerous medications to try but you might also want to consider a list of alternatives that are available http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

Also here's a list of seizure medications you can research. Click on the med in the column on the left to find out more about it. http://www.epilepsyontario.org/client/eo/eoweb.nsf/web/Medications

 

[Meetz1064]

Hi, hello

and how do you do? It's nice to "meet" you!

I'm Meetz, and I thought I'd drop by and say hi for a minute or two.

Nakamova brought up a great idea with the journaling idea. I highly recommend to everyone, especially those who are new to E. Why? Because it will help you to find patterns in what she does, and hopefully find triggers for the seizures. The doctors LOVE to see journals.....

Here's what I generally tell people to put in a journal--and you can adapt it whatever way you want. Some people also keep track of their bowels in it, as they find that that can also be a trigger (YES IT IS TRUE!!!)

That said, here's the list. I know it's long, but don't be overwhelmed. It's worth it, I promise.

********************

1. Sleep. List how much & when.

2. Eating. List how much, when & what. It's possible to have seizures caused by allergies to food.

3. TV/computer/video games. Yup, they can affect you if you're photosensitive, so list when, what, and HOW LONG.

4. Menses (for women). Start tracking your cycles. CATAMENIAL epilepsy does exist, sometimes it's tied to ovulation, sometimes its right at the TOM. Also, LADIES, DO get a thorough check of ALL your hormones done—female, thyroid, and any others. Believe it or not, they do factor in on seizures.

5. Stress List when it occurred, and what happened.

6. Exercise List what you did, when, and any reactions.

7. Seizures/auras. If you have either, DOCUMENT THEM. Auras--note what they're like--do you smell or taste something that others don't? Hear something? Seizures--how long, when, where, what happened. If you don't KNOW what happened, get eyewitness accounts when possible and DOCUMENT THEM. ****side note**** Auras ARE partial seizures!!!

8. Smoking and alcohol. Ditch them--both are neurotoxins for our brains.

9. Meds (of ANY kind). List the dosages, and when taken.

*******************

Responses To The Above List


1. You MUST get 7 to 7.5 hours of sleep as a MINIMUM, no ifs, ands or buts about it.

2. Eating--one of the other mods, Skillefer, (we call her Skilly), promotes eating 6 small meals a day, using a dessert plate, filling it with a carb and a protein. Good idea, I think. However, some people, like me are allergic to certain foods. You might want to look into various diets. Ketogenic, Modified Atkins, Low Glycemix Index, Gluten Free Casein Free (see www.dogtorj.com where the actual given name is GARD—it stands for Gut Absorption Recovery Diet).

3. Look into a glare screen for your computer or blue tinted polarized GLASSES (available by prescription from eye doctor). These can help cut down on seizures that are caused by photosensitive epilepsy.

4. GUYS--you may not have a cycle, but you DO have hormones. DO get your doc to do a full hormone screen, check thyroid, etc, just to make sure.

5. Use things like yoga, music, walking, whatever it is that you do to bust out your stress. Keep a separate journal to write in so that you can write out your feelings in--and keep it for your eyes only. Write it out by hand, two or three pages at a time. It helps A LOT. DO IT EVERY DAY.

6. REFLEX E can be caused by exercise, so DO track what you do. Keep in mind that you SHOULD NOT swim, bike, hike or bungee jump by yourself. Same goes for mountain climbing.

7, 8 & 9. 'Nuff said.

OK, the journal IS a pain in the arse. No doubt about that one. BUT it DOES help the doctors track things down.


Good luck, and take care!

Meetz
:rock:

 

[Cint]

Hi and welcome, Havefaith,

I agree with what everyone has stated about seizures, medications, surgery. With your niece being 14 years, I think she needs to try a few more options before considering brain surgery. I did have a left temporal lobectomy when I was 32 years old, and to this day I wish I'd never had it done! Before the surgery, at least the meds were controlling the TC seizures. After the surgery, all hell broke loose! I went through and still experience depression, have CP and TC seizures. Of course this was 19 years ago and they say things have improved, but there is still that small % of folks who surgery doesn't do any good.

I wish your niece the best in making her decision.

 

[skillefer]

Hello!

Just chiming in to say hello! I agree with everyone who has posted so far. 14 is awfully young for deciding whether to operate of not. I'd strongly recommend keeping the journal and seeing if your neice can figure out her triggers. Also, doctors can prescribe combinations of meds, and there are always the alternative treatments that can be used complimentary treatment options to help the meds be more effective. There are so many things that can effect med metabolism such as vitamins and foods.