Acceptable to Have Nocturnal Seizures?

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Starburst

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I have asked some variations on this question before, so I apologize if it seems I am being repetitve. I am still trying to understand some issues regarding my children and their seizures.

Both of my children have nocturnal seizures that are not controlled by medication. My infant takes 1,000 mg of Keppra per day, while my teen (age 18 ) takes a whole bunch of stuff (Keppra, Lamictal, Valproic Acid, plus an anti-depressant due to issues with OCD).

The Keppra has helped my infant a little but he is at a maximum dose now and still has seizures while asleep. They are "minor" compared to what he used to experience. Basically all the seizure activity seems to be in his hands. Should I just accept that he has these "minor" seizures and let it be, or should I seek more aggressive treatment for him? I am unhappy and hestitant about the idea of him taking more medication. So far, he is not having any troubles due to Keppra, and I would hate to start a new medication that is going to affect his liver or give him other troubles. In other words, is it okay to have these kinds of seizures every night?

Regarding my older son, the cocktail of meds he is taking is taking a toll on him. He is tired all the time. He can't focus or concentrate, and we just went through a bad month with him vomiting and getting dizzy. Besides this, his seizures actually seem to be worse rather than better. I can't help but wonder if he would do better taking no meds. I mean, if he is having seizures anyway, what is the point of taking all this medication? Again, the seizures only happen when he is asleep. Is this something that *must* be controlled?

Is there any light at the end of this road?

How long does it typically take for people to find the right combination of meds to stop their seizures?

It's been about a year for my teen, and it has been very frustrating.
 
better to have them in bed than out during the day
 
You have a load on your shoulders, so sorry.

My son has night time seizures to (he 27), he is getting break through despite the meds...

I just cannot imagine they would/should give your Son /add any more meds, could you maybe discuss with his specialist to remove maybe one at time to rule out if one of the meds is causing the sickness and dizziness, maybe get down to only one med and maybe increase it? I am a little shocked at the cocktail and no wonder he cannot function, these E meds are all inhibiters, no cure...poor child and I cannot imagine how he must feel inside his head, plus the pyhsical ilness, I know my Son says it’s impossible to describe the weight (inhibit) in his brain and he is on what may be considered low dose of valpro only. But, each 4-7 weeks and we see a nocturnal T/C.

My Son avoids any med increase, he is planning to move out in near future and it’s scary as hell letting him go knowing they are not 100% in control, we are going to talk to his specialist in Jan, and we know what he will say, increase, but before he does that, we have lots of questions we will be asking, plus asking for new EEG and MRI to measure against from his original one at hospital in 2009 (end of year)

On your eldest, what do his docs say? I mean, there is only so much med one can/should take.

I looked at this (link below) but cannot find a practioner, the one I found local in fact said no, she had no experience with Epilepsy. But still, it has some interesting info that we are going to apply, or at least try to; I am researching a 'normal' breathing class.

http://www.normalbreathing.com/Articles-how-to-prevent-seizures-during-sleep.php


my goodness, my heart really feels for you....
 
some of the meds, themselves, can have adverse effects of potential seizures... have you read up on the potential adverse reactions to the meds?

many of the meds used for epilepsy/seizure control ARE used for psychiatric illnesses/disorders and many of them worsen symptoms or cause new symptoms to occur... especially when someone is taking multiples of them... same can be true for seizure disorder

the dizziness, vomiting, sickness... etc.. could be med related. The continued seizure activity could be med related.

I'd really look up the potential adverse reactions and possible interactions of the meds, ask your family pharmacist (they know more about the drugs themselves) and discuss with the docs your concerns regarding how the meds are actually helping or not helping your children.

Your eldest will soon be of age to decide on his own, as to how he wants to continue his treatment but he needs to be well informed of both the options and consequences.
 
if there is vomiting, it could also be diet related. my meds dont interact with spinach or teas of any sorts.

there is a long list somewere in the kitchen section on the site of food that dont play well with the meds.

if it is a common night time med around there you may see a lot of night time seizures,
 
If his seizures are worse than they were before taking all the meds, it could be that his dosages are too high. I was on a high dose with worse seizures, and blood work confirmed that my med levels were in the toxic range rather than therapeutic, and this can cause seizures to worsen.
 
Thank you for all your responses and suggestions. I really appreciate it.

My older son was originally just taking lamictal, but the doctor added valproic acid because his EEG was still abnormal after a certain period. Can't really remember when we suddenly noticed he was having noctural seizures. They may have been going on for a long time and we never knew since we were not previously in the habit of watching him while asleep. Each time we told the doctor he was still having noctural seizures, he'd tell us to increase the lamictal or the valproic acid until finally he began having episodes of vomiting, dizziness, and double vision. He then told us to reduce the valproic acid and add keppra, the idea being that he will soon switch him completely to keppra and eliminate the others. Have done all the necessary bloodwork, and everything is within the range of normal.

Just don't know what to do or think anymore.
 
No, it is NOT ok to have nocturnal seizures. Ongoing, frequent seizure activity, especially in babies and young children can lead to brain cell death, mental retardation, behavior issues, loss of speech, and sometimes even physical disability. If the baby and teen are not responding to their current meds, it is high time to explore other options -- either different meds, and/or dietary or possibly surgery. Not wanting to scare you, but we have been down this road with our own child.

First question: what type of doctor is treating your children? If you aren't already, you need to get them to a pediatric neurologist or even better, an epileptologist, preferably connected with a large children's hospital or a teaching hospital (connected to a medical university). It sounds like they both have intractible epilepsy, and you need the best minds working on getting them seizure free.

I really didn't like the idea of your teen taking Valproic Acid until he was vomiting. Were they doing blood tests for med levels? This drug can destroy your liver if the levels are too high (we went through that as well). The Keppra isn't so toxic to the bodily organs (considered a "safer" drug)-- but it can have horrible psychological effects (we're going through that right now).

Sounds like the baby is having myoclonic seizures. This is one of the seizure types that responds well to the Ketogenic diet. Recommend you check it out. The Charlie Foundation and Matthew's Friends sites can be a big help. Our child has been on it for almost 2 years, so we can also answer any questions you might have. The diet takes a lot of commitment (but it beats horrific drug side effects and damage caused by seizures) and needs to be started at the hospital with a trained nutritionist. The diet may also be helpful for your teen.
http://www.charliefoundation.org/
http://www.matthewsfriends.org/

Also, you might want to consider supplements. We found Magnesium, given at bedtime, to be helpful with sleep and noctural seizures. Not sure if it can be given to the infant, but your teen may respond well.
 
Thank you, Karen. Although the doctor has said it is important to eliminate the seizures, I was not aware that they can cause mental retardation and the other problems you described. I have never read an article that clearly states this and would really like to read more.

The dose of valproic acid was 1,500 mg per day, and we were monitoring his liver and the level of medication. Nothing abnormal was found, and the doctor said the level was low.

A neurologist is treating both children. He treats both children and adults and has a lot of experience with children. We are from the States but currently live overseas. In the country we live in, we do not have a wide range of sub-specialties like pediatric neurologist or epileptologist. We do not even have a children's hospital. This doctor was trained in the U.S., however, and worked in a prominent children's hospital there.

Am interested in the ketogenic diet but don't know if anyone here will know about it. Thank you for sharing this information...I will be looking into it and seeing what more we can do. Every website I read says the diet can only be done under the supervision of a medical professional. Is there any "lite" version that one could do on their own?
 
Hi Starburst

It must be frustrating watching 2 children have seizures and feeling helpless.

Have you tried the Kinetic Diet. This may be greatly beneficial to the infant.

From my experiences and my own trial and errors and I am saying this to everyone. What foods are your children eating. Ensure they are on a preservative free diet, read all the labels of your food, even things like turkey & beef (which causes me to have seizures) due to preservatives and colourings in it.

You may think that you are eating healthy but the fine print must be read on all labels and understand it, even some natural yoghurts are bad for you.

Try a strick preservative free diet for a month and see what happens. Keep a seizure and food diary, drink plenty of water. Keep me posted I would like to know how things go.

I worked out on my own that Lamictal was causing me to have seizures as it has sacchrin in it and sacchrin causes seizures even in people who doent have a history of epilepsy. Avoid anything that says "diet" or "fat free" or "no sugar" avoid MSG and MSG related produces including "spices" "yeast extract".

Do research on foods and preservatives you might be shocked. Spead the word and tell your friends, if enough people stop eating preservatives then the government will ban them. I am in Australia and our government is NOT strict on labeling.
 
All my seizures happened over night (except the 1st one which was in the morning)
If she gets seizure that often, I'd suggest you to tell neurologist to change the medication. Lamictal are not that good for controling seizures - that's what I read from others + my own experience.

ALSO, I'd highly recommend you NOT to keep her on antidepressants (ANY kind of). They can only ruin your memory and make your impulses even worse (experiences for ages ago). I'm OCD sufferer too but I do not do any drama with it. I woudn't describe it as normal but I also wouldn't say it's obligatory to take anti-depressants. I've been dealing with that since 2 years ago but now I'm sort of fine, it's almost gone - without any anti depressants. Believe me, they can only do worse.

I'm just 19 years old :-)
 
Thank you, Karen. Although the doctor has said it is important to eliminate the seizures, I was not aware that they can cause mental retardation and the other problems you described. I have never read an article that clearly states this and would really like to read more.

The dose of valproic acid was 1,500 mg per day, and we were monitoring his liver and the level of medication. Nothing abnormal was found, and the doctor said the level was low.

A neurologist is treating both children. He treats both children and adults and has a lot of experience with children. We are from the States but currently live overseas. In the country we live in, we do not have a wide range of sub-specialties like pediatric neurologist or epileptologist. We do not even have a children's hospital. This doctor was trained in the U.S., however, and worked in a prominent children's hospital there.

Am interested in the ketogenic diet but don't know if anyone here will know about it. Thank you for sharing this information...I will be looking into it and seeing what more we can do. Every website I read says the diet can only be done under the supervision of a medical professional. Is there any "lite" version that one could do on their own?

1500 mg of Valproic Acid is a quite high dose, even for a teen or young adult. Our Jonathan was on that drug (Depakote) for about 6 months. The highest he got to was 1250, and that just about did him in (even though the blood levels were not high). Aside from liver enzymnes getting into the 200 range, he also started crying all the time (this the child who never cries), and stopped talking (he'd lost his speech earlier when on Topamax, and just started regaining it, and then another setback).

I will go look up the links to seizures and brain cell damage and post those back here. Some people can have frequent seizures without cognitive or other issues, (of course, the meds can cause issues), but in very young children, there is an increased risk of permanent damage. Both the Ketogenic diet and possibly Omega 3 oil (fish oil) can have some healing effect on damaged neurons (most of the seizure meds only stop the seizures, but have no healing effect).

Like you, we live overseas; however, currently we are in a mega-city with good professionals (trained in states). When we were living in a different country that didn't have such good care, we would either come here (Bangkok) or fly back to the States. We actually went back to the U.S. for 2 years to get Jon on the diet (as well as take care of some extended family situations).

I seem to remember that either on the Charlie Foundation site or the Matthew's Friends, there is a list of physicians and/or hospitals overseas that will administer the Ketogenic diet. However, it hasn't been updated, and more and more hospitals are starting to do it. For instance, Beth Zupec, the nutritionist from the Charlie Foundation, recently spent a lot of time in the Middle East, working with hospitals there to train the doctors and nutritionists in how to work the diet into the typical Middle Eastern diet. Here in Bangkok, the diet is getting very popular with our Neurologist and others, and we have several Pediatricians who have gotten additional training in administering the diet. They have developed a meal plan for the Asian diet, using coconut milk for a major fat, since many kids here can't tolerate cream and butter and such.

The reason the diet has to be initiated in a hospital (about 3 days) and under doctor care is that the parents need to be well trained, and when the child first goes into ketosis, it's good to have them in the hospital in case their blood sugar gets too low. Also, the nutritionists in the states can give you access to the "Ketocalculator" where you can plan out meals for the kids with the right ratio of fat to protein and carbs.

However, your children could start out with a "lite" version of the diet -- by eliminating 2 things -- sugar and gluten (wheat mostly, so no bread or wheat noodles). For many people, this helps dramatically with seizure control, even though they aren't actually in ketosis.

For the younger child, continue with breast feeding or formula (if still giving), but gradually begin substituting with a "half and half" mixture of regular milk (no sugar added) and cream (if you can get it where you are). If you can't get cream, then just use whole milk (powdered is fine). Cut out juice, because that's a big source of sugar in a baby's diet, but eating fresh fruit is ok. Other than that, the baby can eat normally with regard to egg, fish, meat, veggies, and non-gluten carbs like rice. If you can get butter where you are, you can use this when preparing baby's meals, and also any oil is great. This will not put baby into Ketosis, but the elimination of sugar and gluten may give you more seizure control without having to go on the diet, and also, if the baby doesn't develop the habit of eating a lot of sweet foods, she will be better able to tolerate the Keto diet if you go that route down the road.

For your teen, along with eliminating sugar and gluten, you could also try reducing other carbs down to about 50 a meal (and increasing fat so that he gets enough calories). Try to make sure any carbs he gets are not refined (i.e. brown rice rather than white) and carbs that are also high in fiber (like kidney beans and other dried beans) are especially good. This probably won't put him into ketosis (if so, just a very light state), but it would be close. I'd start first with taking out sugar, give that a whirl for a month, then take out the gluten for another month, and then go to the reduced total carbs. You can use this site to calculate carbs/fats/calories/protein per different foods:
http://nutritiondata.self.com/

The classic ketogenic diet uses a ratio of 4:1 or 3:1 -- fat to protein/carbs. That means that for every gram of either protein or carb, one eats 3 or 4 grams of fat. Fat sources could be olives, oils of any kind, avocados, cream, butter, cheese, etc. A "lite" version could be something along the line of maybe 1:1 or less.
 
Also agree with Shona on avoiding processed foods and preservatives. We find this easier to do overseas because there isn't as much processed foods to begin with and here in Asia fresh fruit and veggies are plentiful and cheap. Shona mentioned saccharin triggering seizures for her. Aspartame can be an issue with some people as well. Other sweeteners like Splenda (sucralose) and Nutrivia are usually ok.
 
Here are some links to seizures and brain damage, etc.

http://journals.lww.com/co-neurolog..._epileptic_seizures_damage_the_brain_.12.aspx
"Summary: The emerging perspective is that seizure-induced damage should be regarded not only as neuronal loss but as adverse long-term behavioral and cognitive consequences. This perspective provides a strong rationale for development of neuroprotective treatments to forestall adverse long-term consequences of repeated seizures, and for the importance of prompt, effective intervention that achieves complete seizure control."

http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1157.1997.tb01244.x/abstract
(Recuurent Seizures in the developing brain are harmful)

http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2005.00279.x/full
This study followed 136 patients with intractible epilepsy over 10 years, doing IQ assessment at beginning and end. "Cognitive decline was severe and occurred across a wide range of cognitive functions. The frequency of generalised tonic–clonic seizures was the strongest predictor of decline."
 
Just wanted to thank you guys for putting so much effort into your posts. They are so helpful. My teen is tapering down now on the OCD medication, and we are working with the doctor to find a better combination of meds. for the seizures. As I have stated in another post, they just found an arachnoid cyst on his left temporal lobe, and this may be why he is not responding to medication. If that is the case, we may have to consider other measures to deal with the cyst, but I do not currently know if surgery is an option in my son's situation. He was supposed to graduate from high school this year but failed most of his courses and will have to repeat the year.

Regarding my infant, being overseas definitely helps us eat a healthy, natural diet. Bread is a huge part of this culture, though, and it is very difficult to deny my son bread when it is everywhere around him. I really admire those who are able to follow such a diet consistently.
 
It's been a year since I posted on this thread, and a lot has happened since that time. We changed the medications around, and my older son started to improve in some areas. I've started to have hope that he will graduate from high school this year.

His last two EEGs were normal, and the doctor said we could start reducing Keppra. So we did so very gradually...and things were great. Until yesterday, that is...when he had his first-ever tonic-clonic seizure.

It happened in the bathroom, and it was absolutely terrifying. Thank God my husband was there because he was calm while I was not.

My original question was: Is it acceptable to have nocturnal seizures?

And I now know with certainty that the answer is: No, it is not acceptable.

Left untreated, nocturnal seizures can progress to something much worse.

I am still not completely happy with the combinations of medications my children are taking...but I no longer have doubts that it is necessary for them to be treated. These are doubts that used to plague me as I watched them experience the side-effects of their medications.

All I can say is thank God my son's sudden tonic-clonic happened at home and not on the street somewhere. This is my new fear, and I am very, very worried.
 
I've heard reports of patients on Keppra developing new seizure types, although I haven't been able to find confirmation of that in any studies.

Your son's tonic-clonic could have been a weaning seizure. Weaning seizures don't mean that your child needs the drug for seizure control -- only that his body has grown adjusted to it, and is having a withdrawal seizure (something like withdrawals with a drug addict). We experienced withdrawal seizures when our son weaned from Keppra a little over a year ago. Every time we would taper we would see a cluster of seizures, and then things would go quiet until the next taper. We solved that problem by lengthening the time between tapers and also bumping up the ratio on his ketogenic diet for several days after a taper (this would have the same effect as increasing a medication). His last big seizure was about 1 week after coming off of Keppra completely (he had a couple absence seizures about 8 months ago when coming out of anesthesia, but other than that has been seizure free).
 
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