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helling1111

Is anyone NOT medicating for Absence Seizures?

HI - our daughter was diagnosed over the summer with Absence Seizures. Her pediatric neurologist has recommended starting her on Ethosuximide. She has assured us that the side effects are primarily "upset stomach" and that can remedied by taking the medication with food.

 We are new to all of this and quite overwhelmed. Currently, these seizures are not interferring with her school work, behavior, or social activities. Since it is most likely that she will "out-grow" them we are reluctant to start medication.

 Is there anyone "out there" who has never medicated OR started the medication and then stopped it b/c of the side effects?

We don't want to make the wrong decision. Thank you for any insight.

Comments

Re: Is anyone NOT medicating for Absence Seizures?

My daughter has had absensce seizures for several years.  We opted not to treat with medication to see if she would out grow them.   When she turned 15 and was still having them and wanting to drive we decided to put her on ethosuximide.  This stopped her absence seizures but it did make her sleepy.   She did have nausea in the beginning but after being on it a few monthes she didn't have a problem.  Good Luck

Re: Is anyone NOT medicating for Absence Seizures?

Thank you - I can certainly understand why you would want her to be "seizure-free" for getting her license.  If you don't mind me asking .... in retrospect, would you have started the medication earlier?

Your input is very helpful, as you are farther along the path than we are.  Thanks again.

Re: Is anyone NOT medicating for Absence Seizures?

I completely understand where you're coming from re not medicating. I'm waiting for our 1st paediatric appointment for my 6yr old and after reading about the side effects of anti-epileptics all my instincts are shouting "Noooooo!" I'm not well informed about all this yet but the medication side sounds like a minefield and I just don't want to go down that route. However....I might have to. I'd be interested to know your decision.

Re: Is anyone NOT medicating for Absence Seizures?

HI - it has been about a month since my original post. We have still decided not to medicate - at this time. I am not anti-medication and am grateful that it is available. However, like many, I am concerned about the side effects.

 We are on a very cautious "wait and see" approach. Her seizures will either get better, get worse, or stay the same. Like so many aspects of parenting, we are taking this "day by day".

 I think we all deserve a round of applause for doing the best we can for the kids we love so much :-)

 

Re: Is anyone NOT medicating for Absence Seizures?

I too am not medicating my 6 yr old son for absence seizures.  I'm not anti-medication either but just so scared of the side affects that I read about & hear from other parents!  

  It has been a year now and it has been very difficult because of the redicule that I get for not using pharmaceuticals - from parents, teachers, family and his pediatrician, which said I was bordering on medical neglect!  Needless to say I'm in search of a new one.

I am concerned about other kids making fun of him & my biggest concern right now is swimming!  He knows how to swim and is closley supervised -of course.

 How old is your daughter and how are you dealing with these issues?

Re: Is anyone NOT medicating for Absence Seizures?

HI - our daughter is 8 years old. She has been having absence seizures for almost one year. I know that some people think we are crazy for not medicating but, for now, that is our decision. I have worked in healthcare for over 20 years and it bothers me that we are basically going against the medical advice of our pediatric neurologist. However, we have had an indepth discussion with our family doctor (who knows us very well) and he is supportive of our decision. Although he did tell us that he would chose to medicate if it was his child.  I can understand that perspective.

My daughter is in 2nd grade and has only told me once that she heard someone making fun of her. Of course, that crushed me, but I also know that kids will make fun of other kids for many different reasons.

I also worry about swimming and wonder if there is any safety devices available for keeping kids safe?? Even if my daughter was on medication, I would still have concerns about the swimming pool and other activites.

So ... not sure that helps but we can offer each other support!  Take good care!

Re: Is anyone NOT medicating for Absence Seizures?

Hi I have a daughter who is 8 yrs, she has abscence epilepsey for 16 months now, and I too have chosen not to medicate her, they are very brief spells, and still goes about her daily tasks as normal, school have not noticed these episodes yet, and she seems to be ok on herself, my daugther swims, and I just watch at the side when it is her lesson, she starts swimming with the school in yr5, and they have said they will just take an extra teacher with them as look out, so far she has done well with swimming and passed her honours and also done her mile swim without any problems, i give her omega 3, ive heard that this can help. She seem worse when she is over tired, but she can still hear me talk to her, like i say they are only brief episodes, but she has quite a few a day, when tired, I try and let her get plenty of sleep. The Dr has decided to go along with me for now with not medicating, this was the most terrifying thing ive done, its just the side effects of the drugs seem to outweigh how she is at the moment, this has torn me apart and I worry all the time, we are very caring parents, but feel we would try alternatives first, hope your daughter is doing well

take care Diane

I NEVER WAS MEDICATED FOR ABSENCE SEIZURES

Hi, my name is Brooke Bechtol.

I suffered from these, (what I used to call "daydreams" as a kid) absence seizures for over 16 years.
My parents never drew attention to it, nor was I put on medication.
I felt like a normal kid with a big imagination .
Looking back now, I know these moments weren't normal, and it's one of the feelings I will never forget.
Feeling it coming on...i begin shutting off, staring into space as if through glazed fuzzy glasses, and then taking in the best yawn ever to click back into motion.

I am so thankful to my parents that my natural mind was not altered by chemicals that could have made me a dependant crippled.

I'm 31 years old today, prescription free, with a beautiful family, amazing husband, and 4 gorgeous children.

Just let the body heal itself, and let God stay The Great a physician. ;)

Re: Is anyone NOT medicating for Absence Seizures?

Hi there

I am mum to Lille, who if 5 years old.  In November last year Lille was diagnosed with absence seizures.  I too have chosen not to medicate and completley understand your concerns.  It is a very distressing and confusing time for me (and must be for you too) and I completley understand your predicament.  I dont want to change my daughter in any way by controlling her absences with medication and perhaps substitute one problem for another but neither do i wish to be preventing her from a 'normal' childhood by not doing. I find it hard to fight against the medical world who, although tolerate my wishes are concerned about my not medicating.  I have changed our whole diet (we only eat homemade food from natural ingredients) removed any harmful products from our home environment (sls', parabens) and Lille also sees a homeopath and has regular cranial sacral massage. I can honestly say that her seizures (she was having about 40 a day) have reduced significantly and she now has 3 or 4 a day.  Although on a bad day (when she is tired mainly) they raise significantly - (max 10 lasting about 6 seconds) and im aware that Lille is somewhat confused and daized after a seizure. It is on these days that i question my decision although i know, hand on heart how much the changes to our lifestyle have helped matters.  She is currently progressing well at school although on her last parents evening her teacher commented on her tendancy to become distracted and disinterested (although without seizures, this was also a regular comment made about myself when i was a little girl!).

I worry that as she is so young she cannot describe the feelings of 'disjointed-ness'and no one can really assess how her 'blips' are effecting her.  It also makes me feel sad that she really doesnt know any different.  I am now seeing a childhood nutritionlist who has presrcibed Lille with magnesium although i would ensure you have these prescribed rather than just trying them out.  I feel that the last 4 months for me have been a journey of discovery about environment, neurology and nutrition and it is only a matter of time until i discover the final piece to the jigsaw which will rid of her seizures altogether but it is on days when i see her tired and having many absences that make me question my actions.  I hope i have helped you and would love for you to get in contact if you want to discuss any of the methods i am trying or talk through your decision not to medicate with someone who is in the same boat, we are, like everyone else  trying to do the very best for our precious little ones. Sending love and the warmest of wishes.  Kate

Re: Is anyone NOT medicating for Absence Seizures?

I am 51 years old, so my life issues are substantially different from your daughter's issues. I do not drive, I am not trying to compete for an academic standing, am happily married, etc. But let me share this with you--when I decided to return to college to earn a master's degree, I found that I could not retain anything I studied. Frustrated and depressed, my neurologist suggested absence siezures were the cause--not lack of comprehension, but lack of retention. He adjusted my meds and my studies improved remarkeably...I aced the course!

You didn't disclose how/why your daughter was diagnosed. Is she missing out on details or social interactions attributed to the seizures like I was? You/she may not realize what the seizures are depriving her of until they are treated. Did your neurologist explain that some types of epilepsies may not progress when treated early?

As a person with epilepsy, I benefit tremendously from treatment of the absence seizures (though they are still poorly controlled and I still can't drive). If the first med recommended puts her to sleep, ask for a different recommendation, perhaps. For your daughter, it would be far worse for her to have absence spells while bicycling, walking across a street, or even playing softball (yes, getting hit in the head by flying balls, bats hurts ;-) and does happen). I would, however, wait until spring break, or homeschool her, during the start-up. Just my opinion based on my personal experiences...

Re: Is anyone NOT medicating for Absence Seizures?

I have a 10 yr old daughter who too was just diagnosed with Primary generalized epilepsy after her EEG came back postive for absence or Petit Mal seizures. We have no genetic history and her MRI was negative for anything that would cause these seizures. She has always been a fun, loving, gifted child and very athletic.

Her pediatric neuro started her on Lamictal. We are so reluctant to put her on any pharms. I know that for every good thing they do there are the negatives.  I waited 3 weeks and finally decided we should try it. After 3 weeks on Lamictal her behavior started to change dramatically. She was very impatient, moody, angry and easily emotional. Like a women during PMS times 100. I decided to call and see if we could change her meds. She is now on Zonisamide. After reading that it is not approved for children under 16 I am so confused on what to do next! I read side effects that included it may retard growth in children. I too am so confused. Her seizures are more apparent when she doesn't get enough sleep or when she is stressed from school. I feel their has to be an alternative to pharms. Does anyone know of any homeopathic therapies that can help?? I am not sure what is harming her more.. the few seizures she has or the side effects of meds on a growing child?? Any suggestions??

Re: Is anyone NOT medicating for Absence Seizures?

Our 8 year old daughter has been having absence seizures for about 8 months. We went to a naturopath for guidance regarding diet, environmental factors, etc. She recommended 400 iu of Vitamin E - our pediatric neurologist basically said "it won't hurt anything".

The biggest help our naturopath provided was starting our daughter on 3 mg of Melatonin. She was taking 2 hours to fall asleep and the Melatonin has reduced that to about 30 minutes. We know that sleep is critical, so I feel good about that. Even her neuro. said "I prescribe Melatonin all the time".

 Like you, we are trying to balance the pros/cons of medications. Our doctor recommended Ethosuximide. We haven't tried it yet.

Re: Is anyone NOT medicating for Absence Seizures?

I was diagnosed with petit mal seizures when I was 16 although I had had them since I was 7-8 years old. Prior to my diagnosis my previous doctors were confused about what was wrong with me diagnosing me with everything from asthma to panic attacks (I gasp for breath and look scared/worried when I have my seizures). My doctors also told me I would likely grow out of them but I still have seizures. I was on tegretol and then trileptal for about 2-3 years and then I stopped taking my medicine against my doctor's recommendation. I was and in many ways still am in denial about my seizures.

At 25, I am still having seizures although they only occur in spurts every 2-3 months. I have been off of medication for 6-7 years now. It does not seem to have interfered too much with my ability to function. I graduated from college, have been able to hold a full time job, and am now in graduate school. I am choosing to go back to see a doctor again because I am concerned that my seizures may get worse. I am also concerned about my memory. I have trouble retrieving information. I feel horrible when my husband asks me if I remember an event we shared together and I am completely blank as to what he is referring to. I am embarassed when my classmates ask me about something we discussed in class two days ago and I although I seem to remember talking about it I can't for the life of me figure out the details until they tell me.

I haven't seen a doctor in years but am going back to see one next month. I don't know if my memory would have been better had I stayed on my medication. I am worried though that the lack of medication has allowed my seizures to continue and my memory has continued to decline. 

I have no recommendations or information to share. Only my story. Good luck. 

Re: Is anyone NOT medicating for Absence Seizures?

Regarding memory difficulties with your grad school studies...I stopped my seizure meds, too for awhile. I also stopped working (loss of coping skills) and stopped driving for fear of seizures. I didn't acknowlege my seizures again until I wanted to earn a post-grad degree. The memory difficulties you describe are familiar to me! I ignored seizure reprecussions (tongue bites, inner-cheek sores, broken teeth from nocturnal seizures). However, when I failed to recall material from studying I went back on meds (Dilantin). And my recall improved drastically--I aced the class--which was 98% memorization of terms/definitions! Best of luck...

Re: Is anyone NOT medicating for Absence Seizures?

Thanks, PK! That gives me hope that this can get better.

Re: Is anyone NOT medicating for Absence Seizures?

I was having memory issues also, which is why I went to the neurologist in the first place.  However, I first thought I was having TIA's.  After the MRI came up empty, I was sent to the neurologist and tested for seizures.  

At work, people would ask me a question that was a follow up and I had no recollection of the conversation.  I could not retain anything.  I could not sit in a church service without "blanking" out.  The memory issues are BECAUSE of the siezures.  On medication, I am able to function in a (pretty much) normal lifestyle.  I still do not drive long distances because I do occasionally have breakthru seizures.  I am on Carbatrol.  It has very little side effects except for fatigue.  After about 3 months on meds, this seems to "settle" down.  I was on Lamictal before that but it did not hold back the seizures.

Hope this helps.

Vicki

Re: Is anyone NOT medicating for Absence Seizures?

Vicki wrote:  I was having memory issues also, which is why I went to the neurologist in the first place.  However, I first thought I was having TIA's.  After the MRI came up empty, I was sent to the neurologist and tested for seizures.  At work, people would ask me a question that was a follow up and I had no recollection of the conversation.  I could not retain anything.  I could not sit in a church service without "blanking" out.  The memory issues are BECAUSE of the siezures.  On medication, I am able to function in a (pretty much) normal lifestyle.  I still do not drive long distances because I do occasionally have breakthru seizures... --------  Vicki - Thanks for sharing how verbal conversations in your case are simply not recollected at times.  A question - Do you feel that the Carbatrol somehow temporarily improves your ability to process auditory information a little?   Would you go so far as to say perhaps the Carbatrol improves your hearing a little or would you describe the hearing improvement using different words (like reducing the length of an absence seizure a little)?  Footnote:  absence seizures vs central auditory processing disorder (CAPD) - auditory processing -  http://www.nidcd.nih.gov/health/voice/auditory.htm - Agree with you:  the idea of retaining auditory sounds/ verbal conversations is closely linked to the idea of memory/a memory cache/memory storage areas.  - pgd

Re: Is anyone NOT medicating for Absence Seizures?

I think in my case, I was "spacing out" and just not remembering the conversation.  I know there were times when I was semi-aware of my surroundings but not able to comprehend what was said.  The neurologist explained it to me that while most hear 1+1 = 2, I was hearing 1=2.....the blip in my brain left a portion out....if this makes any sense at all.  I try and explain this to someone without partial complex seizures and they look at you like they are the ones having the out of brain experience!

With church or long meetings, I would feel as if I were passing out or asleep.  My kid would jar my arm and I look up....eyes were open the whole time but I didn't see anything, and I felt as if I were in a vacuum or something...hard to explain the feeling.  And taking notes became a scribbling mess.

Did I answer that question right?  I hope so.  I came on here looking for medication info.  I am on Carbatrol (was on Lamictal for a while too) and have gained 80 lbs in 4yrs.  That might not seem like much to some folks (over the course of time) but it is to someone who has always been a normal wgt.  I am now 49 and struggling to get it off (not the first time since I've been on meds).  I was considering asking my Doc to take me off the Carbatrol and put me on Topamax.  Any suggestions or comments on that?

Thank you, Vicki

Re: Is anyone NOT medicating for Absence Seizures?

PS:  Does Carbatrol help me with the hearing and comprehension?  Yes, because the seizures are the cause of the hearing/comprehension problem.  Therefore the meds keep the seizures from occurring and I can actually function like a normal person (sort of ha, ha)

Re: Is anyone NOT medicating for Absence Seizures?

vsidles wrote:  PS:  Does Carbatrol help me with the hearing and comprehension?  Yes, because the seizures are the cause of the hearing/comprehension problem.  Therefore the meds keep the seizures from occurring and I can actually function like a normal person (sort of ha, ha) ------- Thank you for sharing that the Carbatrol helps you with the hearing and comprehension.  Appreciate it.  At one time it was thought I might have absence epilepsy, however, multiple EEGs over a period of years were normal and a trial of several epilepsy medicines failed to work for me.  My condition was finally slowly clarified with a diagnosis of ADHD Inattentive, central auditory processing disorder, mild dyspraxia, and mild left-side hemiparesis (weakness, not paralysis).  Due to the ADHD Inattentive, tried a number of central nervous system stimulants - alerting agents.  What finally worked a little for me and better than Ritalin, Dexedrine, Adderall, or Adderall XR was the old medicine coffee/caffeine (not a cure).  For me, 100 mg of caffeine (described by the FDA as an alertness aid) will temporarily reduce some ADHD Inattentive symptoms a little (not a cure) and also temporarily improve aspects of my hearing a little (not a cure).  Like you, I can actually function like a normal person (sort of) who has normal hearing/is CAPD-free.  For me the caffeine works a little like the following (not identical to the following):  RSNA.org:  Coffee Jump-starts Short-term Memory Nov 30, 2005 ... Caffeine exerts a positive effect on short-term memory and reaction times. ... meeting of the Radiological Society of North America (RSNA). ...
http://www.rsna.org/rsna/media/pr2005/Coffee.cfm -  As many know, caffeine can lower the seizure threshold for some of those with epilepsy. -  pgd

Re: Is anyone NOT medicating for Absence Seizures?

I have a 7 yr old son and we have chosen from the beginning to not use medication.  We consulted a Health Counselor and now use Homeopathy remedies.  It has significantly decreased the seizures to maybe 5 a day and they only last seconds.  Praise to God.  He functions well in school, homeschooling and social activities as well.   I have heard of so many side effects that children suffer and I have to say it scares me too.  I couldn't bare to think that he can suffer with these side effects.  When he gets older I would rather have him decide for himself.  In the mean time, he is only seven.  I hope you make the right decision for your child. Sincerely, Brenda

Re: Is anyone NOT medicating for Absence Seizures?

I am in my 60s and want to add my 2 cents. I guess i do not have epilepsy, but when I was a child I had mild absence seizures, deju view and eye blinking when tired, hyperventiling, etc. and would lose time. I outgrow them in my late teens and never took a pill (not sure they had medication then) and I am fine so I guess it is up to the doctor and severity of the problem and the frequency. If I had it over again to do today, I would opt not to take medication for the mild absence seizures that I had. Hope this helps someone.

Re: Is anyone NOT medicating for Absence Seizures?

Hi my son is 17 and still has absence seizures.  He was diagnoised @ age 5 and we didn't medicate for over two years.  Unfortuantley they became more frequent and longer and it did effect his life.  I wish we could say it helped, but he has failed 7 diffferent medications, two put him in the hospital and the rest either gave him an allergic reation (rash) or made him worse.

I am curious what Homeopthic rememdies you are trying.  We have tried herbs and currently avoid all Gluten and are on a version of the Modified Adkins diet, low carb hight fat. 

We are always searching, so please let us know what you believe is helping your son.

many thanks,

Laurie

Re: Is anyone NOT medicating for Absence Seizures?

Hi my son is 17 and still has absence seizures.  He was diagnoised @ age 5 and we didn't medicate for over two years.  Unfortuantley they became more frequent and longer and it did effect his life.  I wish we could say it helped, but he has failed 7 diffferent medications, two put him in the hospital and the rest either gave him an allergic reation (rash) or made him worse.

I am curious what Homeopthic rememdies you are trying.  We have tried herbs and currently avoid all Gluten and are on a version of the Modified Adkins diet, low carb hight fat. 

We are always searching, so please let us know what you believe is helping your son.

many thanks,

Laurie

Re: Is anyone NOT medicating for Absence Seizures?

Hi, im new to the site and joined the help other people. Read below, and btw the herbs are 100% safe, not like these western drugs which mess you up.

I have (its going slowly thank god) temporal lobe epilepsy. I was getting hallucination's everyday that made me depressed, hopeless and dreamy. My seizures also gave me panic attacks, which make me go mad, tired etc.

 I recently found out about these breathing techniques. Theyre from the ancient people of India ranging 5000 years ago. I've been using these techniques for the past 2 weeks and iveonly had 1 seizure since then, and i could control its strength. I feel more happy, energetic and more myself.

These breathing techniques are called 'Pranayama'. Google it, its changed my life.

The techniques help get more oxygen into the body and brain, thus replenishing the body and all of its dis-ease.

I also recently went to see Dr.Smita Naram (google her husband Dr Pankaj Naram). She and Dr Pankaj naram have been taught pulse reading and 2100 year old herbal remedies (please read on, i know they are only herbs but trust me) from a 120 year old tibetan monk who has cured so many people of disease.

The monk was part of a lineage of masters from the times of Lord Buddha. Vaidya Jivak was Lord Buddha's physician and passed on the secret to health and happiness for the body to his learner. The leaner in turn became a master (all masters have survived for up to 125+years), which in turn pass the knowledge down.

Anyway, this knowlege has been passed to Dr Pankjak Naram. He has cured epilepsy patient, relieved HIV sufferers and is quite literally a miracle worker.

Anyway, back the point. I saw Dr Smita Naram, she read my pulse and quite literally read my mind. She said i had a weak blood flow, and have emotional difficulty, concentration. I told her about my dream hallucinations where i feel sick, adrenaline rush, depressed and the dejavu i was suffering. She knew exactly what to prescribe me and taught me these breathing techniques.

I have ordered the herbs from India (they grow them in non-polluted areas for more herb potency) and have started doing the breathing techniques. The herbs haven't come through yet but just doing these breathing exercises for 10 minutes a day have changed my life. My 'seizures' didnt disappear straight away, but theyre almost non-existent now and i can control them, how strong they are.  If you dont have money she will try and give you special discounts, and the couple both live for humanity.

Please google dr pankaj naram. Look up ayurveda too. Dr Pankaj naram has a website where he sells his herbs, but you should go for a consultation first so he knows exactly what to give you. There are quite literally 100's of combinations fo herbs for epilepsy.

 Im a 20 year old student studying at Portsmouth University. Email me ramo.666@hotmail.com and i will help you if i can. I can send you the breathing techniques through email too.

As i said i havent taken the herbs yet, they haven't come through the post yet. But just by breathing techniques im seeing amazing results.

PS dont eat microwave food, the radiation used to cook the food changes the molecular structure of the food so it is full of toxic that the body cannot digest but stays in the body because the body cannot digest it but keeps it in the body as it thinks its food.

Re: Is anyone NOT medicating for Absence Seizures?

Although it may seem like it is not interfering with her day to day life, I can assure you if it doesn't seem to be now, it will in the future.  She will not be allowed to drive, it may be hard for her to get a job.  And you don't always outgrow it.  I am almost 30 yrs old and I still have mine.

Re: Is anyone NOT medicating for Absence Seizures?

Revawave. I have heard the same from people who don't know anyone who has seizures.  I am thinking now of careers and work that he will be able to do and  have been reading also about things that he can't do.   Thinking that it will go away is wishful thinking and I believe doctors need to stop telling parents that it will go away.  Its a very small possibility.   I am going to keep on trying to prepare him now although he is only seven.  Thats is why I joined this site.  To try to get more information and learn from people's experiences. 

Re: Is anyone NOT medicating for Absence Seizures?

I have absence seizure and I am on medication but I was only out on the meication because no one knew I was having the absence seizures and when I came home form work one day I fell in my house having a Grand Mal seizure. I recently tired to cut back on the medication because of the side effects, they make me have panic attacks and super irritable. I ended up having at least one seizure that we know of before I went back on the higher dose of medicine. Although there are also other medications I have stopped taking during my life because I just couldn't handle the side effects. My suggestion would be that if the side effects get to the point that they bother you or your child to the point that you can't stand it talk to the doctor about them That's what my doctor told me to do. And if the only side effect she is having is stomach upset try some tums or mylanta, I had to do that when I was ynger and I was on a medication that upset my stomach. The mylanta coats the stomach so I took it later in the day after my medication had time to absorb, so it's something you might want to talk to the doctor about.

Re: Is anyone NOT medicating for Absence Seizures?

My daughter is 10 1/2. She was just diagnosed with absence seizures last week, though I think that she has probably been having them for at least 1 1/2 years. We meet with the pediatric neurologist this week. I've read all the comments below from other mothers, and I share the same concern with medicating because of the side effects. We all want a healthy child with as few side effects as possible. For me, Plan Z is to medicate. Though, I may be moved by "studies show....could get worse...", and so may change my mind. I want to go the nutritional supplement/chiropractic/natural food path. I'm quite aware of what I'm up against with the medical community. I wish that they could see outside of the box once in a while. (But, what can be expected when big pharma pays for research on a antiepileptic drugs and then gives the doc a expense-free trip to Vegas to tell him how wonderfully they work.) I know that the Lord has a plan for my daughter and I'm praying for wisdom to know what plan is best for her. I'd appreciate your prayers! - Mary

Re: Is anyone NOT medicating for Absence Seizures?

I am in the same boat with you and am still plugging away at going the natural route.  I know there must be an answer out there, it's just a matter of finding it. 

Re: Is anyone NOT medicating for Absence Seizures?

Look into a book called Paleo Mind Paleo Body. The writer is a nuerofeedback specialist who gives gobs of scientific research to back her claim our bodies/brain are still designed for the pre-agricultural ancestral diet we lived on up until now. IE 'Organic grass-fed game and greens'. HERE IS WHAT'S NEW ABOUT putting an epiliptic on this type of diet.

She backs her claim that eating this food feeds your body the TYPE of fat it needs to heal the brain. She cured herself of more than one mental disorder (which we see all over this site) and has seen hundreds of others get the same result. Give your skin Vit E when you have a sun burn right? Give your BRAIN which is mostly FAT the GOOD fat and it will HEAL.

My fifteen year old little brother has been dealing with E for two years now. We don't know if it will go away. For the past year he has been having a GM every 7 and then 13 days like clockwork and has had his bouts with anxiety and depression. But never so bad as the Kep-Rage that had him banging on my moms door with a baseball bat and threatening scuicide when only a few weeks early he was literally happy-go-lucky...so we are still debating whether to medicate. The thing is, As his older sister I was wondering when I might have to do a serious step-in/intervention when he actually started getting better.

His seizures are gradually lessoning and his good mood/mellow times seem to be here for longer. The thing is we are dealing with a teenager here. The poor kid does not want to be missing school in the morning because he is too anxious/"twitchy"; he has those too.

 

He may grow out of it. This may be him getting better. We may have made his life worse by staving off traditional treatment. He may have killed himself if we kept him on it. We pray we pray we pray.

The diet is a gem of a resource. He looks like such a healthy strapping young man and he is a good athlete with plenty of energy because he is eating such incredibly nutricious food. It seems like good health is a blessing that always accompanies good mental health.

Re: Is anyone NOT medicating for Absence Seizures?

All I can say to those who are not medicating your children with Absence Seizures that you are very fortunate that you can.  I am 33 years old and have had Absence seizures since I was 4 years old.  I began having only a few a day.  I was told there was a good chance I would grow out of them.  I hit my teens and they became worse...over 100 seizures a day.  I have always been medicated...and have been on several combinations of medications trying to find something that works.  Today I am on a combination of epival, topomax, and keppra.  On a good day I have 5 seizures...on a bad close to 100.  My life is as normal as anyone elses.  I have a great job for a financial institution.  I am happily married.  The only restriction on my life is I can not drive.  I encourage you to treat your kids like "normal" kids.  Encourage them to do all kinds of sports and activities.  But do know that teatment using meds early is probably the right thing to do.  It is nice to think that the seizures will go away on their own, but you have to face reality...your child has epilepsy and you should help them the best you can by treating them.  I also encourage you to talk to your doctors about the side effects of the medications.  I am on three different medications at very low dosages because being on just one at a high dose had very bad side effects for me. 

All the best to your families.

Re: Is anyone NOT medicating for Absence Seizures?

I was wondering if anyone who had decided not to medicate their child, and to make modifications to diet or environmental factures, has any follow up feedback. I just realized my daughter has Absence seizures. She is 6, and has probably had these since she was about 4. I just thought she was "day dreamy". She is a happy, well mannered, developmentally "on target" little girl. I am really apprehensive to start pharmaceutical treatment for something that doesn't seem to be harming her ability to thrive at this point. Any feedback would be greatly appreciated.

Amy Davenport

Re: Is anyone NOT medicating for Absence Seizures?

Hi Amy,

My son, like your daughter, was probably having seizures for about two years before we finally had the issue diagnosed. He has temporal lobe epilepsy (absence seizures) that took the form of a severe headache followed by 24 hours of sleep. This occurred at a gradually increasing rate from 1 episode every 6 months (age 5) to eventually 1 episode every month until we started Keppra at age 7.  Inititially, we assumed that he was having migraines, but in the end realized that he was having seizures when he started staying awake during the headaches. He then displayed the typical mouth and hand movements and unresponsive state that are associated with this type of seizure. We didn't know what it was, but knew enough to call the neurologist. They scheduled an emergency appointment and an EEG confirmed temporal lobe seizures. Like you, I did not want to start him on medication and actually waited 3 more months from the date of diagnosis to start the medication. His seizures got worse, as the doctor said would most likely happen and we decided to put him on the medication. From what the doctors have told me (I consulted 4 different specialists) and from what I have read (months of reading anything i could get my hands on) having repeated seizures actually increases the likelyhood that you will continue to have them and at an increasing rate and to a  worsening degree. As our current doctor eplained, it is like riding a bike. The brain "learns" to have the seizure and each subsequent one gives the brain more practice in having them, so to speak. The medication allows the brain to reset itself and breaks the cyclic pattern. My son has been taking Keppra at it's minimal dosage for almost 2 years now and has not had any noticible seizures. We will be attempting to take him off the medication this summer. Fingers crossed, this will be all it takes. He went through a few months of adjustment to the medication, moodiness, etc. But he has done so well that I am really happy that I took the plunge. He used to get so scared when he would have a seizure and be confused for days afterward. It effected everything. The key is to try to not freak out and keep calm so that your child can keep calm. That makes a huge difference itself. Please let me know if you need any more information. I would love to help you through this difficult and confusing time.  X Rebecca

By the way, my son had already been on a strict diet for years that coincided with some of the more popular approaches to diet and epilepsy simply due to the fact that he has had severe food allergies since birth. He is on and was during and before the seizures started, an ample sleep schedule with an attempt to keep environmental stressors to a minimum because it helpe with his allergy symptoms. We even moved to a dry/desert climate from our original mid west state which had a huge positive impact on his allergies, but unfortunately not on the progression of his epilepsy ( we did not expect it to, though and did not move for that reason.) Having said that, it is definitely worth making the environmental changes and even trying the various diet options out there. Nothing should be ruled out. In our case, however, the medication proved to be the best option. Hope this helps. X

Re: Is anyone NOT medicating for Absence Seizures?

 Hope this helps!

 Look into a book called Paleo Mind Paleo Body. The writer is a nuerofeedback specialist who gives gobs of scientific research to back her claim our bodies/brain are still designed for the pre-agricultural ancestral diet we lived on up until now. IE 'Organic grass-fed game and greens'. HERE IS WHAT'S NEW ABOUT putting an epiliptic on this type of diet.

She backs her claim that eating this food feeds your body the TYPE of fat it needs to heal the brain. She cured herself of more than one mental disorder (which we see all over this site) and has seen hundreds of others get the same result. Give your skin Vit E when you have a sun burn right? Give your BRAIN which is mostly FAT the GOOD fat and it will HEAL.

My fifteen year old little brother has been dealing with E for two years now. We don't know if it will go away. For the past year he has been having a GM every 7 and then 13 days like clockwork and has had his bouts with anxiety and depression. But never so bad as the Kep-Rage that had him banging on my moms door with a baseball bat and threatening scuicide when only a few weeks early he was literally happy-go-lucky...so we are still debating whether to medicate. The thing is, As his older sister I was wondering when I might have to do a serious step-in/intervention when he actually started getting better.

His seizures are gradually lessoning and his good mood/mellow times seem to be here for longer. The thing is we are dealing with a teenager here. The poor kid does not want to be missing school in the morning because he is too anxious/"twitchy"; he has those too.

 

He may grow out of it. This may be him getting better. We may have made his life worse by staving off traditional treatment. He may have killed himself if we kept him on it. We pray we pray we pray.

The diet is a gem of a resource. He looks like such a healthy strapping young man and he is a good athlete with plenty of energy because he is eating such incredibly nutricious food. It seems like good health is a blessing that always accompanies good mental health.

Re: Is anyone NOT medicating for Absence Seizures?

Our Daughter, like yours, was diagnosed with absence seizures (just prior to her 6th birthday).  She has just turned 7 and we have been medicating her since the diagnosis.  Her life is normal with the meds.  She takes Levetirace each morning and evening.  It is as simple as taking a "vitamin" at breakfast and before bed, though with an oral syringe.  She has been a wonderful trooper with taking her meds and the results have been as if we had never had epilepsy.

 I understand that there are many that have preconceptions and concerns about medicating their children.  There had been much media buzz about the general topic, though in a vast expanse of illnesses and conditions.  Everyone is naturally and primarily concerned with their child's well being.  Please understand that there are some conditions that are more "controllable" than others.  In our case, and from our understanding of the absence seizures of our daughter's epilepsy, this is a controllable condition.  Other than the actions of taking the meds each day, her life is happy and normal.  Without the medication, the multiple daily episodes and the safety issues associated, do have a great effect on daily life and routine.  I feel strong with our rationalization to follow through with the medication.  Without it, there are always concerns of walking into something, dropping, spilling, hurting and a notion of needing a 24/7 "spotter".  With seizures, her ability to play on the playground, ride a bike, or engage in other activities (including swimming) would be compromised.  Missing out on the ability of the "normal" childhood would also be compromised. 

 In this instance, we are fortunate that her condition has medication that provides her an option for all of us to engage in her normal upbringing and routine.  Please do not discount this option.  I fully understand and recognise the choices for each family.  Please consider all aspects and effects of the decision and do not stand on the ceremony of a general issue.  Consider whatever it takes to allow your child to have the normal lifestyle.  They cannot thank you now, but they may later.

Our decision was right for us and we are thankful for it.  You will make the right choice for your family.  Good luck and best wishes for you your family and precious daughter.

 

Re: Is anyone NOT medicating for Absence Seizures?

I am not dealing with this for my children, but rather for me. I was diagnosed with a brain tumor in 2007, after having an absence seizure of my own. After surgery, I still have them periodically. I was put on Keppra for a while, but it really didn't seem to help me a lot. After that, I just decided that I would cope with it myself. I no longer drive, due to the seizures. I generally know when they are coming, the aura lets me know soon enough to set myself down...

My health is generally good. I do have some information, from an adult's perspective, on what a seizure is like. For those who have interest in what an actual seizure is like, feel free to view my own blog, www.whoistavius.com/seizures.htm. This one describes a seizure I had a couple of days ago. Also, I may later put some more data on the blog - feel free to look through and see what interests you there.

My own seizures generally result in a temporary memory loss. Even if they are only a few seconds, it is still a lot of times an hour before everything comes back to my memory. It is because of these seizures that I am on disability, as it is impossible to say when I would have them. In some jobs it would be a big danger, so I choose to not do anything outside the home, workwise. I am at the moment working to build a home based online business, as I do still have skills - I don't like having to be dependent on another for my income.