Epilepsy?

[Acony Bell]

Hello everyone... new here. Our 5 yr old dd was diagnosed with primary generalized epilepsy this fall.

Have been having a hard time finding any resources or like minded parents for alternative and complementary therapies... finally thought I'd check in here and see if there are any other families dealing with this.

Thanks!

[QueenOfTheMeadow]

Hi Acony Bell! My son has epilepsy as well. He was diagnosed at 9 years old. He is on medication. I have a seizure disorder due to a bleed in my brain. I found the book Treating Epilepsy Naturally, to be helpful with regards to supplements and diet.

Here's the link to it on Amazon. http://www.amazon.com/Treating-Epilepsy-Naturally-Alternative-Therapies/dp/0658013793 You may be able to find it in your library too.

[melissa17s]

Hello, 

My ds has epilepsy; it is not generalized, though.  He is 9 and also on medication.  We are planning on talking to Dr. at end of month about changing med. because he has had a lot of behavioral side effects.  Our Dr. recommend epilepsy.com as a good place to read about medications and we keep an diary there for seizures and medication.  

Thanks for the book recommendation QueenoftheMeadow.  

[my3peanuts]

My son was diagnosed with Epilepsy at 10 months, he is now 4.5. He is on medication. I've looked into some alternative therapies but they're not for us. It was too risky for us to consider anything but medication.

[QueenOfTheMeadow]

Originally Posted by my3peanuts 

My son was diagnosed with Epilepsy at 10 months, he is now 4.5. He is on medication. I've looked into some alternative therapies but they're not for us. It was too risky for us to consider anything but medication.

We do both the meds and the alternative treatments. My doctor feels that this has helped to keep the amount of medication and the side effects at a lower level. But I definately would check in with your doctor/neurologist to make sure that any supplements that you give your son are OK to do with the medication. Even simple things like avoiding MSG, dyes, getting enough sleep can help to keep the seizure threshhold higher. It's also important to look into any definciencies that the medications can cause. I've had to have my vitamin D checked every year due to the fact that the medication I am on can lead to osteoprorosis in young women.

[Acony Bell]

Thanks everyone!! Love the book recommendation.

We are lucky to have a really good acupuncture school nearby and she has been going there twice a week for the last 8 weeks or so. They have changed her treatments several times trying to find something that helps.

Our dd's siezures are still very mild... she rolls her eyes, we call them eye flutters. She has never had a tonic clonic. The first medication we tried was for absence epilepsy... b/c she does not have absence that medication actually caused her siezures to morph. Since switching to kepra she has not had another of the staring siezures... she is on an extremely low dose of kepra and its not really making a difference. She does her eye flutters all day, sometimes 50 times/day.

We have 2 other children who had severe GERD. They were in PAIN when we medicated their GERD. They cried all night all day... arched their backs and screamed in agony. They needed medication and I will be forever grateful that we could suppress their GERD and give them a better quality of life until they naturally grew out of it.

I just don't see why we need to medicate the epilepsy if it's not slowing her down. If she has a big one we'll get on the medication. DH and I talked about it for a long time last night which was good... we'll be discussing it with her Nuerologist again in Feb, but he'll probably talk us into continuing medication again.

The naturalist in me thinks the seizures are an important part of who DD is. And if they are not harming her in any way... I don't understand the need to suppress them. DD flutters her eyes, it doesn't hurt, it's not effecting her school smarts, and she is happy. And this may really be going out on an edge... but she is special... she feels things and has intuitions that are special. She knows when women are pregnant before they've told anyone, she can sense when people are upset when they aren't around, and has recently become very interested in spirituality. As a toddler she would feel the wind... she would reach her hands all the way up to the sky and to the trees moving in the breeze... and say "HICUMBAH!!". It took us several months to realize she was saying "I'm coming!"

Wow, that ended up long.

[QueenOfTheMeadow]

She sounds like a wonderful little girl!

I'm not that knowledgeable about absence seizures as my ds has tonic clonic and so do I. I would keep an eye on her school education. What I have been told by my sister, who is a special ed teacher, is that as children get older the absence seizures can have a severe impact on their education. I suspect this is because things start moving more quickly and the little absences add up, but I"m not really sure. Also, if she has a seizure when she's climbing or running, is there the possibility of her getting hurt?

[Acony Bell]

Originally Posted by QueenOfTheMeadow 

She sounds like a wonderful little girl!

I'm not that knowledgeable about absence seizures as my ds has tonic clonic and so do I. I would keep an eye on her school education. What I have been told by my sister, who is a special ed teacher, is that as children get older the absence seizures can have a severe impact on their education. I suspect this is because things start moving more quickly and the little absences add up, but I"m not really sure. Also, if she has a seizure when she's climbing or running, is there the possibility of her getting hurt?

DD does not have absence... the first treatment was wrong. She just has primary generalized epilepsy... its not a specific kind. They have no idea if it will develop into tonic clonics or not. If we did take her off meds we would watch her schooling very closely. Her teachers have been incredibly supportive.

Running, climbing, bathing... if a tonic struck, yes. But she hasn't had one yet, and even medicated one could break through at anytime so we are already restricting everything we need to.
 

[melissa17s]

My ds has had much difficulty at school.  He is very behind in reading and writing because of partial seizures in the Rolandic region on the left side.  His seizures are similar to absense in appearance and duration, but not absense on eeg.  He also has other types of seizures including tonic clonic, laughing in his sleep, getting stuck on a word, and difficulty with speech, but the majority have been treated with medication.  Ds was diagnosed last summer, but dr thought ds had epilepsy since he was at least 2-3 years.  He was unmedicated for many years... and frustrated all the years he has been in school.  He was often in trouble for what the teachers felt was passive resistance to doing work.  As far back as kindergarten, it was noted that he was either totally on or off, but no in between.  He has short term memory problems related to both seizures and concentration/impulse problems we think are related to the current medication. He goes to OT to help with handwriting and is in special ed for reading and writing.  I am so amazed at how much he learned and adapted considering there were so many times he was unable to take in what was happening around him with full presence/attention.  

[QueenOfTheMeadow]

Originally Posted by Acony Bell 

Originally Posted by QueenOfTheMeadow 

She sounds like a wonderful little girl!

I'm not that knowledgeable about absence seizures as my ds has tonic clonic and so do I. I would keep an eye on her school education. What I have been told by my sister, who is a special ed teacher, is that as children get older the absence seizures can have a severe impact on their education. I suspect this is because things start moving more quickly and the little absences add up, but I"m not really sure. Also, if she has a seizure when she's climbing or running, is there the possibility of her getting hurt?

DD does not have absence... the first treatment was wrong. She just has primary generalized epilepsy... its not a specific kind. They have no idea if it will develop into tonic clonics or not. If we did take her off meds we would watch her schooling very closely. Her teachers have been incredibly supportive.

Running, climbing, bathing... if a tonic struck, yes. But she hasn't had one yet, and even medicated one could break through at anytime so we are already restricting everything we need to.
 

That's good. It's such a scary thing to deal with because it's so unpredictable. I hope that things stay stable for your dd.

[Acony Bell]

We were really lucky... our pediatrician caught it early. She had been having seizures all summer but they are so subtle we just thought it was part of her melodramatic nature. She is ahead in school (kinder) reading and writing above average. Most of her eye flutters she talks or dances, etc. right through. Very rarely she will repeat a word or get "stuck". Sometimes in direct sunlight she will get stuck in a cycle of them. Like 4 or 5 back to back.

[QueenOfTheMeadow]

What does the neurologist have to say about her EEG?

[Monkeypants]

My DD has very short partial complex seizures. She is unmedicated and the seizures do not seem to affect her too much. Over-all her development is progressing well and the seizures don't seem to set her back. They usually come in clusters (she might have 6 or 7 20 second seizures in a day) but the clusters are infrequent (less than once a month) She is sometimes tired after.  The seizures are generally mild, she can often talk through them, she doesn't fall if she is standing, she will breathe if I remind her. So far the benefits of medication are outweighed by the negatives.  Her seizures seem to be triggered by illness, so we are vigilant about keeping her healthy (good diet, hand washing etc).  I have never met another family with a child in the same situation as DD.  Sometimes she will even do something new after a bout of seizure. For example, this last time, about a month ago, she had 6 seizures in 6 hours. She showed no signs of fatigue and then pooped on the potty for the first time that afternoon. The only effect was that she was tired sooner that night. She developed a chest cold the next day, which probably triggered the whole episode.

Anyway I just wanted to let you know what our situation is- as DD seems to be in a somewhat unique position- but I think it is possible to have a seizure disorder and not be medicated, at least in our case. Good luck to you and your daughter!!

[QueenOfTheMeadow]

Originally Posted by Monkeypants 

My DD has very short partial complex seizures. She is unmedicated and the seizures do not seem to affect her too much. Over-all her development is progressing well and the seizures don't seem to set her back. They usually come in clusters (she might have 6 or 7 20 second seizures in a day) but the clusters are infrequent (less than once a month) She is sometimes tired after.  The seizures are generally mild, she can often talk through them, she doesn't fall if she is standing, she will breathe if I remind her. So far the benefits of medication are outweighed by the negatives.  Her seizures seem to be triggered by illness, so we are vigilant about keeping her healthy (good diet, hand washing etc).  I have never met another family with a child in the same situation as DD.  Sometimes she will even do something new after a bout of seizure. For example, this last time, about a month ago, she had 6 seizures in 6 hours. She showed no signs of fatigue and then pooped on the potty for the first time that afternoon. The only effect was that she was tired sooner that night. She developed a chest cold the next day, which probably triggered the whole episode.

Anyway I just wanted to let you know what our situation is- as DD seems to be in a somewhat unique position- but I think it is possible to have a seizure disorder and not be medicated, at least in our case. Good luck to you and your daughter!!

So very true! I know a few kids who have seizures and haven't needed to be medicated. Like so many other things, each child is so different. The Brain: The Last Frontier!!

[melissa17s]

Originally Posted by Acony Bell 

We were really lucky... our pediatrician caught it early. She had been having seizures all summer but they are so subtle we just thought it was part of her melodramatic nature. She is ahead in school (kinder) reading and writing above average. Most of her eye flutters she talks or dances, etc. right through. Very rarely she will repeat a word or get "stuck". Sometimes in direct sunlight she will get stuck in a cycle of them. Like 4 or 5 back to back.

Glad you ped. caught  your dd's seizures.  We were unaware some of ds' eccentricities and character traits were seizures.  Does your dd still have the seizures while on medication?  If so, you should keep a documentation for the neurologist, and they will likely want to change the dosage (just anticipating the dr. pov).  Are you sure that that is the only type of seizure activity she is having or is that all that is still occurring?  If she has "generalized" epilepsy, then there is a possibility of generalized seizures even if you have not seen them, yet.  I think you need to  have a thorough talk with your neurologist about your desires for natural treatment and the larger picture for your dd's future.  If they are not listening to your concerns or explaining their pov effectively to you about the your dd's situation, then maybe you need to consult another doctor.  Communication with your medical professionals is essential, but hard when you are dealing with something unexpected or outside of your scope of knowledge.  You may want to talk more with your ped, too, if you have a better rapport. 

How did she do with blinking lights on her eeg?  It seems like you are indicating light is a trigger.  How does she do with tv, computer, or video games?  Not all triggers are the same for seizures and you may not find what all does for all, but I would be careful to avoid activities involving direct sunlight if it causes seizures.  In the case of my ds, sleep is a trigger for him.  If he does not get enough because of nightmares or getting tired in the day, he still has seizures even on the med. 

I do agree pp that choosing healthy lifestyle choices from whole foods to enough sleep are good.  You can check with pharmacist or neuro to see if any vitamins or foods are counter-indicated with the medication she is on.  These are changes you can likely do with or without medication.  

[anj_rn]

My DD has both tonic clonic and focal seizures.  She is on a moderate dose of Keppra, which completely controls the tonic clonic, but she still has breakthrough focal seizures.  Focal seizures are seizures that just occur in one body part, and don't necessarily incapacitate you.  DD has both eye flutters and foot twitches.  DD has 0-3 focal seizures a day that last long enough to notice.  She might have more brief ones.

How abnormal is her EEG?  We don't go off meds since DD's EEG is so abnormal.

[ainh]

Man. I don't know if I should or shouldn't read these posts!  I have long suspected DS2 of having seizures, but our doctors seem really unconvinced and keep saying "you'd know if you child was having seizures".  Ummm...yes.  I think he might be.  He twitches all the time in his sleep (something I wouldn't know if we didn't co-sleep) and there are times that I've woken up to him having very seizure-like movements in his arms.  He also has a come and go "tic"...where he shrugs his shoulders and another where he says the last syllable of words over and over and over again. 

Part of me wants the doctors to take me seriously.  But part of me has also thought, "if they diagnose him with seizures, then I'll have to grapple with how or if to medicate him".  He just turned two and he's active and talking in 2-3 word sentences.

We are scheduled for a sleep study because his sleep is rather crazy...seems happy on about 8.5 hours a night and a 2-3 hour nap.  This means he's up at like 4:30am, or awake for 2-3 hours in the night and then back for a small stretch.

Ugh.  Anyway.  I feel like I'm in your position, even if not quite officially there and I'm thankful for this thread.