ADVERTISEMENT
kelleymiller

16 year old with absent seizures - seems like forever

My 16 year old daughters has be diaganosed with absent seizures in 4th grade, around 9 years old. Her neurologist said if she can be seizure free for two years, she will be taken off the meds. Well, many med changes later she was put on depakote. She's been on depakote for about 3 years now, 1500 mg per day. She is still having seizures and is sick of taking meds. She also developed polymyositis this year and is on a ton of other meds for that. She has gotten to the point many times that she just doesn't want to take any more pills and had hid them instead of taking them. After she misses a few days, she has a grand mal seizure from withdraw of the depakote. The neurologist we go to just keeps upping her dosage and keeps telling her two more years and this will be done. I do plan to seek a new neuologist since we are both frustrated with this. She never had a grand mal seizure before taking the depakote. When she stops taking the depakote, she is fine, no absent seizures for a few days until the level gets low and she has a grand mal. I've told her until I can't talk anymore you can not just stop taking that, it has to be slowly removed but being 16 she knows it all.

My question to you out there, is this normal? Has anyone else expirenced this? She used to be a great kid and since the meds has become, well, not a mother's dream child of any kind.  I would love to take her off all meds but I want to do this safely. She's been going through this forever and enough is enough.

Kelley

Comments

Re: 16 year old with absent seizures - seems like forever

Hello Kelly,

 I am not familiar with the anticonvulsant depakote, but I have been told repeatedly that medications such as it can be responsible for changes in mood and cognitive functioning. As for all medications, there will be individuals who have negative mixed responses to a medicine like depakote. If your daughter does cooperate, and a neurologist puts her on another medication, watch her carefully. Look for any kind of rash, and especially observe her behaviors/mood. Some anticonvulsants can lead to extreme "emotional fits," (depression and anger).

People with epilepsy MUST get a goodnight's sleep. I've heard meditation and yoga have aided some epileptic patients. How much do your daughter's seizures affect her school work? It may be a good idea to get her a 504 Plan or an IEP.

Your daughter has every reason to be frustrated, but (of course) withdrawing from procedures (medication, etc.) will not do her any good and she needs to know that. Remind her of what every silly teenager thinks about or is getting ready to do.
*Teenagers are just itching to get their driver's license, and feel more "independent!" Remind her that if she doesn't take her medicine and try to be patient (as hard as it is), she'll have to have someone else transport her all the time until her seizures have been controlled by medication for X amount of time. (It may depend on your state. Usually, it's 6 months seizure free with follow-ups).
*Assuming that she aspires to make something of herself, attending a university will not be easy if she does not control her epilepsy. Colleges will also make special accommodations for her, but she must cooperate too!

It is difficult, but the key is patience and rationality. Maybe it would be good to sit down and have a calm discussion concerning what she is feeling, and what your hopes and intentions are for her. I assume that she knows you are only trying to help her; if she seems angry at you, it is really towards the overall situation of having to deal with a seizure disorder. (And then there's the other fact that she is a teenager, and will soon grow out of those phases! Haha)

One thing that has helped me understand and cooperate is to actually read a scientific analysis of what my seizures are exactly, and how what I feel compares to the description. To me, though still frustrating, my epilepsy became even more intriguing, and allowed me to see the bigger picture. (Although, I was and am a geeky science person, so it may not appeal to her the same way).

 Has your daughter had EEG's and MRI's performed? It's not certain, but it could give a better indication of if she will or will not "grow out" of her Epilepsy. 

 I wish you the best of luck, and know your daughter will eventually acquire help that will at least make things a lot more comfortable for her.

I too am a 16 year old with epilepsy.

Re: 16 year old with absent seizures - seems like forever

I think what is frustrating her the most is the new meds she is on due to polymyositis. She gets almost weekly IV's and at one point she was taking up to 8 pills twice a day. They even had to put her on zantac because it was damaging the lining of her stomach.

She knows all the positives and negatives about taking and not taking her medicine. She just doesn't care. I figured when she had a grand mal seizure during school, she's take charge of this and take her meds but she just didn't care. I'd be embarrassed to death over it but it was like nothing to her.

We have had all the EEG's and MRI's done, even an 24 hour EEG. I just keep getting the response that she's still having absant seizures during her last EEG so we are going to wait 2 more years.

I just wish they would take her off the depakote. I'm not hearing good things about it and she never had a grand mal seizure before she started taking it. She has enough problems I don't want to have this damage her liver or anything else. The meds she is on for the polymyositis rely on the liver to clean up the damage they are doing.

Thanks for letting me vent.

Kelley

Re: 16 year old with absent seizures - seems like forever

First of all, get a new neuro! You might try clicking on this link NEW Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors  The list has been compiled by eforum members based upon their own personal positive experieneces. 

You might also want to try one of these anti-epileptic diets. Some people claim it has helped beat their epilepsy or at least reduce their seizures and the amounts of medication needed...

The Ketogenic Diet — one of the oldest treatments for epilepsy.

There are many children for whom epilepsy medications like Lamictal, Depakote, and Zarotin are ineffective in controlling or even reducing seizures. These drugs, especially in combination, can also cause unpredictable and serious side-effects.

That’s why many parents have turned to alternative therapies for seizure management. Because ketones seem to have an anti-convulsive effect, one of the most promising and least invasive alternative treatments for seizures has been the Ketogenic Diet.

The diet is a high fat, adequate protein, low carbohydrate diet which works by fasting which in turn, creates ketones, which are by-products of the fat-burning metabolism that happens while fasting.  And during this time, the body goes into a state known as ketosis— which has an anticonvulsant effect.  Seizures often lessen or disappear during these periods of fasting.

With careful and proper monitoring, the Ketogenic Diet has been found to reduce seizures in two-thirds, and eliminate seizures in one-third, of all children for whom anti-epileptic drugs are ineffective.  And if it is successful, it’s usually continued for two years. During this time, children are often gradually able to lessen or discontinue the amount of medication they take for seizures. And interestingly, many children seem happier and more alert on the diet, even before medication is significantly lessened.

The Atkins Diet — may reduce seizures in children with epilepsy.

Along with helping some people shed unwanted pounds, the popular low-carbohydrate, high-fat Atkins Diet may also have a role in preventing seizures in children with epilepsy.  That good news comes from the prestigious Johns Hopkins Children’s Center.

In a limited study of six patients, including three patients 12 years old and younger on the Atkins regimen for at least four months, two children and one young adult were seizure-free and were able to reduce their anti-convulsant medications. Findings of the study, also showed that seizure control could be long-lasting on the diet…for as much as 20 months.

The researchers caution that the Atkins Diet should not lead to routine use in children with epilepsy, nor should it be used to replace the Ketogenic Diet — the rigorous high-fat, low-carbohydrate diet already proven to reduce or eliminate difficult-to-control seizures in some patients.

The common elements in both diets are high fat and low carbohydrate foods that alter the body’s glucose chemistry. The Ketogenic Diet mimics some of the effects of starvation, in which the body produces ketones, a chemical byproduct of fat that can inhibit seizures. Children who remain seizure-free for two years on the Ketogenic Diet often can resume normal eating and often their seizures don’t return. The AtkinsDiet, while slightly less restrictive than the Ketogenic Diet, also produces ketones.

In the short term, the Atkins Diet could be used by selected patients as a “trial run” for those considering the Ketogenic Diet in the future.  In the Johns Hopkins study, five out of six patients attained ketosis within days of starting the Atkins Diet and maintained moderate to large levels of ketosis for periods of six weeks to 24 months.

Johns Hopkins researchers will further examine the role the Atkins Diet plays in the management of epilepsy in a larger clinical study of 20 children with epilepsy, which began in September 2003 and already has enrolled several patients.

MAD — Modified Atkins Diet — more user-friendly.

Although it’s referred to as “MAD”, the Modified Atkins Diet is really the best of both possible worlds.

This modified version of the popular high-protein, low-carbohydrate Atkins Diet can significantly cut the number of seizures in adults with epilepsy.  And it has shown promise for seizure control in children too, offering a new lifeline for patients when drugs and other treatments fail or cause complications.

It’s a less restrictive, higher in protein and carbohydrates, a dietary therapy for epilepsy for those who would otherwise use the Ketogenic Diet. So far, it’s been used and researched for the past five years with outcomes similar to the Ketogenic Diet. Recent data has also suggested this valuable new therapy leads to a rapid seizure improvement when effective.

It’s not exactly know, how ketones reduce and eliminate seizures, or why the diet works for some and not others. Researchers are especially interested in why some children remain seizure-free after discontinuing the diet. Further research is needed, since the Modified Atkins Diet has only been used since 2004.

But it’s promising to note that clinical research did show that about half the patients experienced a 50 percent reduction in the frequency of their seizures by the first clinic visit. About a third of the patients halved the frequency of seizures by three months. Side effects linked with the diet, such as a rise in cholesterol or triglycerides, were mild.

In general, the Modified Atkins Diet is recommended for: adolescents, adults, and younger children with difficulty staying on or starting the Ketogenic Diet…families with limited time…those lacking financial resources to cover the costs involved with the Ketogenic Diet…and patients at centers with limited dietitian support.

Good news: The Modified Atkins Diet doesn’t deprive you of rich foods like butter, peanut butter, mayonnaise, oils, cheese, bacon, eggs, hamburger, and whipped cream. The diet doesn’t cause children to become overweight, and overweight children often lose weight. But daily supplements are necessary to replace vitamins that are missing in the diet.  Suggested vitamins include: Vitamin B-1…Vitamin B-2…Vitamin B-3…Vitamin C…Folate…Vitamins D…and E.  Check your multi-vitamin to see if ALL of these are included..

Although there are considerably fewer side effects than with drugs, the Modified Atkins Diet for seizures can cause dehydration, constipation and, occasionally, kidney and gall stone complications. Side effects can also develop in children who are unable to digest large amounts of fat. As with all treatments, initial evaluation and careful monitoring by parents, a neurologist, and a nutritionist are all mandatory.

We do know that the Modified Atkins Diet for seizures is as effective, less restrictive, and far easier than the Ketogenic Diet. It’s an inexpensive alternative treatment option with few side effects that often works when all else has failed.  And that is good news for all of us who have tried previous diets and given up hope or even the strict discipline.

G.A.R.D –The Glutamate-Aspartate Restricted Diet – a life-long elimination diet.

Let me start by saying the G.A.R.D diet is highly controversial.  While some claim “dramatic improvements in the severity and frequency of their seizures,” others find it a diet difficult to maintain.  And if you cheat a smidgen, your seizures will come back. So, consider this a life-long commitment…or else just skip it.

Essentially, the G.A.R.D is an elimination diet, specifying definite foods (which includes food products and ingredients) that must be avoided.  So strict vigilance is mandatory for this diet to work.

Here is a line-up of the forbidden foods: gluten – commonly derived from wheat and grains…casein – protein found in cow milk (and most dairy products)…soycorn – including corn syrup and corn derivative products…MSG (mono-sodium glutamate) – a very common food ingredient in processed foods even though it is rarely clearly labeled as such…aspartame – commonly used as a sugar substitute…glutamate – found in high concentrations in most beans/legumes…and hydrogenated oils.

And if that’s not depressing enough, there are no clinical trials proving the effectiveness of the G.A.R.D Diet, just anecdotal evidence.  However, if it does work for you, seizure control could begin within days to weeks after starting the diet.

The only good news I can see, is the G.A.R.D Diet is a carbohydrate junkie’s dream come true.  But there’s so many other foods and ingredients you have to sacrifice, it hardly seems worth it to me.

Good luck and let us know how she does...    Phylis Feiner Johnson    www.epilepsytalk.com