Absence Seizures

[veggiemom2004]

Hello!

I am wondering if anyone has a child(ren) with these? My 5.5yr olds teacher suspects that she is getting them at school about 2-5 times a day. I havent seen too many signs at home though she does fit many of the characteristics of kids with them. I am taking her to see a dr next week and I assume that an EEG will be in order.

I am not thinking that I am going to be open in the case that she IS getting them, to doing any sort of medication other than natural therapies. I have been reading about some and was wondering what others have tried? We are vegetarian but I would consider fish oil but am not sure if it would make her sick since she has never eaten fish or any type of meat. Generally I treat with homeopathy and herbal supplements and would like to go that route but I am not sure where to start!!

Any info would be greatly appreciated!!

Heather

[theretohere]

My daughter has a different type of seizures, but I think that the best way to decide how to treat them is to look at the whole picture.
a) Are the seizures causing negative psychological, neurological, or social effects?
b) What will happen if they remain untreated?
c) What treatments are effective?
d) What are the side effects?

It's not an easy decision, especially starting out. Most of the families I know- mine included, have ended up on traditional medications. I might have decided differently if my DD only had absence seizures, though.
I'd wait for the EEG and talking to the neurologist.

[DocsNemesis]

I'm not going to be very helpful here, but my son had absence seizures for the first 6 years of his life. However, he also had complex partial seizures (one sided grand mal seizures) and he also suffered from night terrors/hallucinations due to the seizures.

I don't have much advice though, we medicated him starting at about 4-5 years of age. Before that, we just dealt with them. However, had it just been the absence seizures, I don't think we would've medicated. I don't know anything about natural methods of treatment, like I said, I'm no help!

[veggiemom2004]

Thank you! If it were something worse than absence seizures, I would be much more inclined to medicate. I am worried that the absence seizures are only PART of the issue, and that she has another type of seizure too that just hasnt reared its ugly head yet.

Thank you again!

Heather

[my3peanuts]

My son has atypical absence seizures which are actually quite a bit different in terms of prognosis but I agree with the others about asking some of those questions. It's unlikely a doctor will perform an EEG without first referring you to a neurologist but it's possible. I would document any episodes you may be seeing.

[brookely ash]

my son has been having absence seizures since he was 7 yo. He is almost 11. I was of the same mindset as you regarding medicating him. When we first noticed his seizures, we took him to our ND. We altered his diet, added cod liver oil and monitored for 6 weeks with ZERO improvement. at that point she said " you need to go to a pediatric neurologist for further testing, i'm not qualified". Around this time ds wasn't really thriving. he looked sooo tired all the time. as soon as school was over, he'd get in the car and fall asleep only to wake up, eat dinner and go back to sleep. these symptoms started about 6 months after the seizures began.

i then asked her if she knew any neuros that were interested in more natural therapies and she chuckled and explained that neurology is such a finite science that its uncommon to find a doc who believes in naturopathy like that.

we went to the neuroligist. had the EEG. turns out ds was having about 30 a day. ( if your dd's teacher is seeing 2 - 5 she is probably having a lot more than that as they can be hard to catch ) they caught 20 in the half hour EEG. they were very typical absence seizures. the neuro gave us a prescription and asked which pharmacy we wanted the nurse to call it into.

we let him know that we weren't having the rx filled right away, but would take it with us and decide later. he was FLOORED that we didn't immediately begin medicating our ds, but we walked out with our heads held high knowing we were just trying to figure out the right path for us.

i took the prescription to my naturopath and she researched the drug Zarontin. At our next appt. she explained what the drug does, how it works and what affects it has on the body. she also explained that allowing the seizures to continue had two major side effects.

1 - he was not getting any deep sleep. he would seize while sleeping and it would prohibit his body from getting the real rest he needed.

2 - the more seizures he has, the more the pathways in the mind get used to it and the chances that the seizures turn into another type of seizure greatly increases. also there is a chance of damaging the brain.

she suggested we try the meds. Zarontin is used ONLY for absence seizures, unlike a lot of other anti-epileptic meds ( which are commonly used to help bipolar disorder, schizophrenia and other more intense issues) she also recommended a high dose of taurine, B6, cod liver oil and a good quality multi vitamin.

we decided to try the meds. it killed me. i remember after giving him his first dose just collapsing on the kitchen floor bawling. ( he didn't' know that - thank goodness )

some of the side effects wore off quickly ( upset tummy was the main one ) but others still continue, mainly lack of apetite.

After everything we've gone through, i would recommend medication. this is something i NEVER EVER EVER thought i would say. DS is doing GREAT! we haven't seen a seizure since May

[heatherdeg]

My son had them as an infant/toddler. He had one very obvious/typical non-absence seizure when he was 13mo and then had absence seizures probably for another year or two. And honestly, if not for having them caught on film I'm not sure they'd have known this for sure because they didn't turn up on a 1-hour nor a 48-hour EEG. But they did dx him with Atypical General Epilepsy.

Because they didn't get it on EEG, we opted not to medicate. Especially since they did the 2-day (or maybe it was 3 days?). Of course, they gave the stern warning that "the next one could leave him brain damaged" but we were SO uncomfortable with the whole thing with NOTHING showing up on the EEGs--ya know? I'm not sure how we'd have handled it if the results had been different.

FWIW, we haven't seen any of them in a few years. Of course, we also did have some major food irritants removed that also profoundly impacted his overall development. And knowing that Hopkins has a diet to control seizures, I DO often wonder if it was related at all. He does also take fish oil daily for the last 2 years. I don't recall if they stopped before or after that.

We have considered taking him for another EEG as he recently started falling/tripping at strange times lately, but I'm going to see if it lasts.

Not sure if this helps at all.

[theretohere]

Originally Posted by heatherdeg

My son had them as an infant/toddler. He had one very obvious/typical non-absence seizure when he was 13mo and then had absence seizures probably for another year or two. And honestly, if not for having them caught on film I'm not sure they'd have known this for sure because they didn't turn up on a 1-hour nor a 48-hour EEG. But they did dx him with Atypical General Epilepsy.

Because they didn't get it on EEG, we opted not to medicate. Especially since they did the 2-day (or maybe it was 3 days?). Of course, they gave the stern warning that "the next one could leave him brain damaged" but we were SO uncomfortable with the whole thing with NOTHING showing up on the EEGs--ya know? I'm not sure how we'd have handled it if the results had been different.

FWIW, we haven't seen any of them in a few years. Of course, we also did have some major food irritants removed that also profoundly impacted his overall development. And knowing that Hopkins has a diet to control seizures, I DO often wonder if it was related at all. He does also take fish oil daily for the last 2 years. I don't recall if they stopped before or after that.

We have considered taking him for another EEG as he recently started falling/tripping at strange times lately, but I'm going to see if it lasts.

Not sure if this helps at all.

There is a diet for seizure control- it's called the ketogenic diet. It's not at all just like cutting intolerances and dyes, though- it's a major diet change that mimics starvation to make the body burn fat. It's the only diet I've heard of with results- and it's always suggested after medication doesn't work because the diet itself can be dangerous. I haven't really seen any research indicating that any other dietary supplements or changes impact seizures.

[my3peanuts]

The other diet used in helping control seizures it the modified Atkin's diet. It is similar to the Ketogenic diet but does allow some carbs so it is less strict.

[mama4gals]

Several months ago, my 7 yo dd began having a strange twitch, where both sides of her mouth twitched downward for a few seconds. She seemed to be unaware of it, and I had heard from others that childhood twitches usually just go away and it's better not to make a big deal out of it. Then I began noticing that when it happened, she got an odd blank look in her eyes. This has been going on quite often (I notice it about 10 times a day, probably, and I think it must go on a lot when I'm not watching). I have googled it and it sounds exactly like absence seizures. We have an appt. with a pediatric neurologist next week. I am very worried about all this. She is homeschooled, barely vaccinated (only 2 doses of DT at age 4 or so) and other than seasonal allergies, has always been extremely healthy. She has always been a highly sensitive child, what we used to call high-strung. That has been very frustrating for me, because the parenting methods that always seemed to work with my 3 older girls just don't seem to work with her. She's extremely bright and inquisitive, but difficult.

Of course, we do not have that diagnosis yet, but everything I've read indicates that that is probably what it is. It's comforting to find others who are going through the same thing.

Liz

[heatherdeg]

Originally Posted by theretohere

There is a diet for seizure control- it's called the ketogenic diet. It's not at all just like cutting intolerances and dyes, though- it's a major diet change that mimics starvation to make the body burn fat. It's the only diet I've heard of with results- and it's always suggested after medication doesn't work because the diet itself can be dangerous. I haven't really seen any research indicating that any other dietary supplements or changes impact seizures.

Yes--that's the one. The ketagenic diet. I haven't seen any research about other dietary changes and seizures, either. By the same token, I haven't seen any research on protein intolerances affecting development and yet I've seen that first-hand in addition to reading countless other parents who have the same experience.

I know the ketagenic diet is extremely specific and I think they keep you inpatient for it (or at least they used to).

[Kailey's mom]

Keto diet...

I just wanted to add, if that is the route you take, make sure and do it under medical supervision. I know it can be a miracle for many children, and adults. Watch the movie "Lorenzo's oil" btw.. here are the side effects. I just want to post them that way you know it's not something 100 percent natural that doesn't have any bad effects..it does alter the way the body works.

Ketosis. Ketosis is a state in which the body is burning fat and producing ketones. Ketones are a by-product of fat metabolism, and the state of ketosis should not be confused with ketoacidosis, which is a life-threatening condition that may be developed by diabetics who are burning fat too quickly. For those with diabetes, especially juvenile (Type I) diabetes, the state of ketosis may be undesirable, as it may overwhelm the delicate balance of the system that keeps blood glucose and blood insulin levels under control.
Kidney Problems. The higher levels of protein in this diet may pose problems for people who have compromised kidney function. For this reason, low-carb, high-protein diets are generally contraindicated for kidney patients and for those at high risk for kidney disease.
Dehydration. While this shouldn't be a problem, it frequently crops up among low-carbohydrate dieters. The reason is two-fold. The increased sense of fullness from the higher-fat intake can suppress both thirst and appetite -- especially since many people confuse symptoms of thirst with hunger. Thus, a person may simply fail to drink enough water to adequately hydrate the body. The second reason a low-carb dieter may suffer dehydration is the increased fat metabolism. The body must have water to metabolize and excrete fat, and the water that is stored with fat is generally not sufficient to meet this need. Dehydration can be avoided by careful attention to the amount of water drunk each day: as with any diet, the dieter should drink one ounce of water for every two pounds of body weight.
Electrolyte Imbalance. It is possible, with the increased excretion of water and the accelerated metabolism of fat, to induce a state of hypokalemia, lack of potassium in the blood. It is important, therefore, to ensure that the low-carb dieter includes adequate quantities of low-carb vegetables containing potassium. Broccoli, avocado, cantaloupe, and berries are all good sources for dietary potassium; supplementation is permitted, but those on blood pressure medication should consult their doctors before supplementing with potassium.
Hypertension and Other Cardiac Problems. While there have been claims of elevated blood pressure and cardiac problems, none of these claims has been shown to be true of those who were following the Atkins Diet as written. Those who completely avoid all sources of carbohydrate may, indeed, incur such problems. But, for those who are faithfully following the written regimen, the opposite effect has often been noted: their blood pressure decreased to levels closer to normal, and their heart function improved.
Elevated Blood Lipid Levels. One of the fears among doctors and scientists is that the higher fat content of the Atkins diet may put patients at risk for coronary artery disease and other cholesterol-related problems. This fear has not proven to be well-grounded. Most people who follow the diet under their doctor's supervision have reported reduced levels of triglycerides and low-density lipoproteins (LDL, or "bad" cholesterol), and increased levels of high-density lipoproteins (HDL, or "good" cholesterol.) Those who are considering this diet, but who already have cholesterol issues may wish to discuss the regimen with their doctors and request frequent lipid profiles during the first few months to ensure lipid levels are not negatively affected.
Minor Side Effects
Some of the minor side effects reported by those who follow the Atkins Diet include:

constipation, which may be remedied by the addition of flaxseed, celery, and other fiber-rich food sources, as well as increased consumption of water.
halitosis, which may be addressed by increasing water consumption and adding sugar-free mints or gum to the diet plan.
fatigue or weakness, which should first be explored to see if it is related to other health problems. If not, then a slight increase to the daily carbohydrate allotment may be in order

[mama4gals]

My daughter was diagnosed in Nov. with classic absence seizures, right after her 8th birthday. The dr put her on Zarontin, and so far we've only been able to get her up to 1 tsp a day, which is half what he wanted her to be on. At first it caused stomach upset, but that seems to be gone. But from the very beginning it caused her to have trouble going to sleep and staying asleep. That has somewhat subsided, although she sleeps about 8-9 hours a night, as compared with before the med she slept about 10-11 hrs. I wonder if she may have been sleeping so much before because the many seizures were tiring her out? Anyway, she's always been quick to anger and irritability, and says "I can't" a lot in frustration during homeschooling, but all those things have become worse since the med. The good news is that I haven't seen a seizure since about 2-3 weeks after the med started. But when they tested her blood a couple of weeks ago, the results came back at 22 (40-100 is normal). I am waiting for the dr to call back to discuss options with me. I don't understand why I can't keep her at 1 tsp a day if it's working. I don't want to switch to another med because the others have worse side effects. These past few months have been an emotional nightmare for me. I hate medicating my daughter, but I can't let her keep having seizures. It would isolate her and ostracize her to be doing this weird mouth twitching/spacing out thing all day long. She told me awhile ago "Ever since I started the medicine, I feel like I'm not me anymore". That broke my heart. As soon as I was alone, I cried my heart out. Tears are always just below the surface.

And I wonder about the med--does it simply prevent the seizures, or does it actually cure them? If it's just preventing them, with the eventual result that she will grow out of them, then it seems that a lowered amount of med would be okay, if it's working.

And I wonder about fish oil, and vit. E oil, both of which I've heard help kids with seizures. Are they safe to take, and can they be taken with the med?

I would greatly appreciate any advice any of you could give me. Thanks.

Liz

[brookely ash]

it took a long time for the zarontin to effectively work, and for us to get to the correct levels. and in the process i wanted to quit increasing the doses, SO BADLY!!!! I felt exactly how you felt. I would fall into a puddle of tears after giving Jack his last dose for the day, always trying to hide my tears from him of course. i was a WRECK. I absolutely hated medicating him, but now I think it was a really good decision.

but honestly, the side effects pretty much went away once we were on a good dosage.

my son jack takes 4 teaspoons a day. What worked for us, as we increased the med, was to spread the doses out over 3 x per day.

before being medicated, he would sleep constantly. and was always tired. I think that 10 hours is normal for an 8 year old.

If you want to PM me about other supplements that we use, please do.

Hang in there, Liz. I think its ok to continue to increase the meds - in fact - it may take away most side effects.

[noobmom]

I have a family member who has partial complex seizures. In retrospect, they began as absence seizures when he was a young teen (11-12 years old). In our limited experience/opinion, it's a good idea to treat the seizures because if they are uncontrolled they can get worse over time, as it did in his case. I hope you have good luck with more natural treatments, but please consider traditional medication as well if those don't work. I think it was very scary for his parents the first time he had a seizure where he lost conciousness--it happened while he was driving and he was truly lucky to be able to walk away from the accident.

[ericswifey27]

wish I had some info to share, my 6 yr old son just had his first appointment with the neuro today and has an EEG scheduled for absence seizures... He seems to be having absence seizures now but he also had a febrile seizure at 1 1/2 or so. I hope you find the right answers Mama!

[aiccerb]

Long story short, we had to pull our son of his seizure meds (Depakene) for a time period and were suprised to see a decrease in his seizure activity on his EEG's when he was taking the supplement taurine, as suggested by our naturopath.

We continuted with the taurine (along with his other supplements) when we re-started his meds and his tests have been the closest we've been to controlling his seizures while taking both.

Best of luck to you.

[brookely ash]

How much taurine do you give your child?

My son takes high doses of taurine and B6 vitamins.

[mama4gals]

Well, the doctor finally called me back today. He said he was frankly amazed that the seizures have been gone on only 1 tsp ethosuximide per day, but that if that was working, to stick with it. He told me that the med is preventing seizures, not curing them. The idea is to prevent them long enough for the child to outgrow them.

Some of the side effects seem to be not so bad anymore. She is sleeping better at night now. I've been giving her 3/4 tsp med in the am and 1/4 tsp in the pm, so there's not so much in her system when it's time for bed. The dr. said this was great. The agitation and frustration are still a problem, but I guess I'm not sure how much of this could be just a stage she's going through, and how much is due to the med. And I am trying to learn new ways of helping her deal with her frustrations.

Darn! I forgot to ask the dr. about adding supplements. Normally, I don't consult a medical dr about supplements or natural remedies, but since the med she's taking is so powerful, I don't want to give her other stuff w/o consulting him first. I don't want to give her anything that's going to do harm.

Thanks for this forum. It's good to connect with other mothers experiencing the same things.

Liz