Epilepsy Foundation

 

My daughter's pediatrician is a well known Naturopath, as well as a DAN dr (he truly is fabulous - he has reversed my daughters Autism, and she can now speak again and make eye contact.  He also travels the world giving lectures on natural healing and the damage vaccines can cause).  He had me purchase a homeopathic remedy for seizures last yr.  Ive been too afraid to try it, thinking it wont work and I do not really want to take the chance because my daughters seizures are status.  However, I believe she is experiencing ""Keppra-rage", it is horrible, awful, and Im almost ready to give it a try rather than live with constant, uncontrollable violence.  Here it is: Organics Wholesale.  It's called Spasmonell D-33.  Anyone ever heard of it? 

 

Of course, if you are concidering using it, I'd check with your physician first.  But it is an option if nothing else has worked.  And can homeopathic 'stuff' hurt - I dont know.  But it might help, and might not hurt (it also might do nothing).  Just wanted your opinion, and to share this with you.  Though I doubt my neuro would approve, but she isn't doing anything to help either...  

 

 

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My neuro has suggested The Elimination Diet handbook.  When we did do the GF/CF diet, I didn't see enough improvement to continually put all of us thru that.  BTW, the filler they usually contain is corn.  She is also sensitive to corn, and eggs!  An impossible diet to follow, especially w a 4-yr-old who also has Sensory Intergration Disorder and won't eat as it is due to smells, tastes, textures, etc.  I am at my wits end! 

 

As for the violence part, I've had friends walk out on me, boyfriends leave, I don't know what to do.  I expect that from strangers who do not understand, but family and friends (family has a difficult time being around her also, but they try to stay patient).  Very, very frustrated! 

 

 

We tried a homeopathic remedy a few years back and it triggered an awful status seizure. We stopped the remedy and never tried another.

We do LGIT (a deitary treatment), the healthiest version possible along with mito supps.

My daughter who is now 7 is doing great!

Both diet and supps have not only helped with her seizures and migraines, but helped with behavioral issues too.

 

J

I've not tried any natural treatments but my son does see a DAN and he did suggest adding taurine in addtion to his regular meds. We've been switching our regular med and/or increasing them so much that I haven't really wanted to try it yet b/c I wouldn't know if any side effects/improvements were from the taurine or meds. 

 

I have not heard of anything else.. except the keto and modified atkins.

Thanks for the warning!  Guess I won't be trying it.  What is the LGIT diet?  Is it possible to do with gluten, casein, corn, and egg allergies?  I agree the supplements are wonderful too. 

jjbeck said:

 

We tried a homeopathic remedy a few years back and it triggered an awful status seizure. We stopped the remedy and never tried another.

We do LGIT (a deitary treatment), the healthiest version possible along with mito supps.

My daughter who is now 7 is doing great!

Both diet and supps have not only helped with her seizures and migraines, but helped with behavioral issues too.

 

J

I have not heard of taurine.  One more thing I need to research.  I contacted my neuro today too.  I believe my daughter is suffering from Keppra-rage (and has been for yrs, I just didn't know about it til recently).  We will be weaning her off Keppra and on to Trileptal.  So, I too, should probably wait.  But it is good to have something else in mind for a back up later, once she has adjusted.  Thank you! 

jvickers82 said:

I've not tried any natural treatments but my son does see a DAN and he did suggest adding taurine in addtion to his regular meds. We've been switching our regular med and/or increasing them so much that I haven't really wanted to try it yet b/c I wouldn't know if any side effects/improvements were from the taurine or meds. 

 

I have not heard of anything else.. except the keto and modified atkins.

Just searched Taurine on ef site.  It brought up Jake's story that Taurine can also trigger status (as per his doc).  Pls search and read Jake's story. 

Donna Mercadante-Quinones said:
I have not heard of taurine.  One more thing I need to research.  I contacted my neuro today too.  I believe my daughter is suffering from Keppra-rage (and has been for yrs, I just didn't know about it til recently).  We will be weaning her off Keppra and on to Trileptal.  So, I too, should probably wait.  But it is good to have something else in mind for a back up later, once she has adjusted.  Thank you! 

jvickers82 said:

I've not tried any natural treatments but my son does see a DAN and he did suggest adding taurine in addtion to his regular meds. We've been switching our regular med and/or increasing them so much that I haven't really wanted to try it yet b/c I wouldn't know if any side effects/improvements were from the taurine or meds. 

 

I have not heard of anything else.. except the keto and modified atkins.

LGIT is low glycemic index treatment which is one of the Modified ketogenic diets. Atkins is the other one.

yes it is possible to do it w/o gluten, casein corn and eggs.

We completely avoid gluten and corn and mostly avoid casein.

Avoiding eggs would be easy enough to do.

 

RE: taurine, we tried that too when we were with that ND. Really did not have an effect either way.

 

Anyway, here are some links:

LGIT info:

http://www.charliefoundation.org/faq/low-glycemic-index-treatment.html

LGIT compared to keto and MAD:

http://www.charliefoundation.org/faq/comparison-chart.html

LGIT is a medical treatment and should only be done through a neurologist AND dietitian trained in LGIT or keto.

 

Our version is similar to SCD, but we do fewer carbs and do not use all of the SCD allowed foods. SCD is a diet you can probably do without a physician and since your child has or had autism, I would consider SCD. Since you are seeing a DAN, he should know about this diet. Ask him.

Here is a link:

http://www.scdiet.org/

There are some who have gotten seizure control with this diet alone (perhaps in some because their sensitivity to gluten was the actual cause of the seizures)

 

RE remedies and supps supposedly able to reverse effects of damage from vaccines.

That was what the remedy my daughter  was supposed to do. Instead it could have causued more damage.

In my daughters case, she has damage from stroke. She has had vaccine reactions but I don't know if they have caused any additional damaged. In her case, I believe it is primarly diet and therapy specific to her deficits and excesses that have helped. In general, some of these diets can help with inflammatory issues (both of the gut and brain)

Her supps are specifically for mito related issues and  prescribed by an MD who specializes in mito disorders.

 

Since your child has/had autism, I am wondering if you are familiar with the work of ped neurologist Dr Martha Herbert.

I have seen many physicians speak about autism, give their theories or treatment option over the years. Martha Herbert though is the first who believe truly gets it!

Here is a link to info about her and some of her work:

http://www.marthaherbert.org/transcend/

You can learn a lot about her work from this paper of hers:

Autism: A Brain Disorder or a Disorder That Effects the Brain

 

 

HTH,

 

J

 

 

 

Spasmonell, the product that you linked to is literally a muscle relaxant.  Your brain is not a muscle so this would have no effect on seizure activity.  Whereas it may make your daughter's muscles less tired or rigid during a seizure it will not stop the seizure itself.  Not sure if you are aware but this is a product regularly "prescribed" to treat menstrual cramps.  

 

I would question any doctor that encourages a muscle relaxant for neurological electrical activity.  I don't believe in homeopathy however there are some more natural treatments for epilepsy that I have become a believer in due to seeing it with my own eyes.  I am a firm believer in the ketogenic diet given my own son went from hundreds of seizures a day to an average of 1 a week with dietary therapy.  If you are looking into a more natural therapy, I would talk to your doctor about dietary therapy.  There is nothing natural about ingesting chemically diluted substances.  Just because it was diluted from a supposed natural substance doesn't change the fact that it went through many processes to turn it into the final product AND that is hoping that any of the original substance is still in it given some ratios of homeopathic dilution.

 

Please please please don't put your daughter's life in the hands of such a product.  If she has status episodes it is a very dangerous situation and I would hate to see another case of SUDEP being reported on these forums.  I've live through status episodes myself and it is already hard enough to witness.  If you must have a natural resource, please consider dietary therapy.

In addition to seeing our regular pediatric neuro we also see a integrative neuro who has done several 'out of the ordinary' lab testing on my 5 yr old who has BRE.  Through all the testing we have found she is deficient in a few vit/min and also her body seems to be working too hard and needs some extra amino acids and such.  We also had her allergy tested and although the 'normal' (IGE) testing came back normal, her IGg tests came back highly sensitive to many foods.  So now my daughter is on several supplements and I think they are really helping.  Also we are on Keppra and have been for about a year.  The Keppra has kept her seizure free but she was still having 'seizure like' behaviors in middle of night until recently when her supplements were increased and special diet was started. 

Anyway... I don't know about one homeopathic pill being a solution but I do strongly believe in the specialty lab work, which helps to gain knowledge about what things may being going on in the body that MIGHT be triggering seizures.

 

GOOD LUCK,

Brenda

http://benignrolandicepilepsy.wordpress.com/   ....our BRE story

Brenda,

Who is your integrative neuro?

Dr. Shetreat-Klein

NYC

www.brainmending.com

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