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Discussion Starter #1
<p>First let me say, my daughter is 14 months old, still breastfed, was born at home unassisted, has never received a vaccine, does not get "fake foods" like aspartame, food coloring, etc, and our entire family is gluten/casein free. She has also taken probiotics most of her life (started them for colic before we knew she had TSC or before the epilepsy began)</p>
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<p>My daughter also has a genetic disorder, Tuberous Sclerosis Complex, in which benign tumors occur in different organ systems throughout the body. Her biggest problem at the moment is that she has countless benign tumors throughout her brain, causing intractible seizures. She began having infantile spasms, a devastating brain damaging form of seizure, at 4 months old. She has been on ACTH (strong coricosteroid), Topamax, Keppra, Sabril, and 100 mg/day of Vitamin B6. She has had relative success with staying seizure free, but after getting them stopped at 4 months old, they came back 2 months later, were stopped with meds, and then in October of this year she began having absence seizures, then complex partial seizures, and finally tonic clonic (grand mal) seizures. She is now on a new drug and will hopefully be getting off of Topamax soon, as i HATE that drug.</p>
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<p>I am wanting to look into more natural options to cure her of her epilepsy but am not having much luck. Her neurologist, though good, is a typical MD and knows very little about natural cures for epilepsy, andi  can't find any naturopaths in my area who are well versed in treating epilepsy, or they are not taking new patients. On all the websites i look at, they're only addressing epilepsy that's caused by eating gluten, or aspartame, or heavy metal toxicity from vaccines, or candida overgrowth...and they assume all epilepsies are caused by bad lifestyle choices. But my daughter does not fit into ANY of those categories. She's got lots of tumors in her brain that have been there since before birth, and they're likely not going away.</p>
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<p>I still feel she can have success with natural methods, but I'm having a hard time finding answers. Any help is appreciated.</p>
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<p>I had read that turmeric is good at relieving the cognitive-impairing side effects of the oxidation caused by AED's, but I cant find any info on HOW to administer it to my daughter, how much, etc.</p>
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<p>Other options are things there's just no way i'm going to get down a 14 month old's throat. Someone mentioned taking a few tablespoons a day of coconut oil. I know coconut oil is a wonder food/drug, but how on earth do you get straight coconut oil down your baby's throat? Same goes with many of these other supplements.</p>
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<p>As it is she is already taking 7 separate doses a day of medicine, and her seizures are still not stopped.</p>
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<p>I dont want to put her on a ketogenic diet or atkins diet either (not that those are NATURAL necessarily, but they're a diet modification), because of the risk of kidney stones, and she's already at a high risk of kidney stones because she's on 175 mg/day of Topamax.</p>
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<p>A friend whose son has similar problems found relative success for about a year with chiropractic and acupuncture, but beyond that, anything? We'll be moving in amonth back to Las Vegas and I know an acupuncturist and a good family chiropractor there, but beyond that i dont think there are any naturopaths.</p>
 

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<p>The only "natural" intervention for seizure disorder that I know of is the ketogenic diet, which is a high-fat extremely low carb diet.</p>
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<p>Unfortunately, the diet is often not well-accepted by the child. Who given the ability to make a choice, would probably prefer to take medication than be on the diet.</p>
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<p>Tuberous Sclerosis is, as I understand it, not a stable process. The tumors continue to change and grow, if I am remembering correctly. So the medication to control the seizures due to the tumors in the brain must be periodically modified. I know you are opposed to seizure medication, and if it was a matter of finding a means of controlling the seizures caused by a neurology that is likely to remain fairly stable, I think it would be okay to pursue other options and not do medication. But with TS, which can unexpectedly cause an increase in seizure activity that could lead to (and has) death - I think the best thing to do is aggressively treat the seizure disorder with medication in hopes that the seizure threshold will stay high so that an unanticipated severe seizure is at least somewhat mitigated, while also finding more natural supports and therapy.</p>
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They recently came out a new medication to shrink the tumors has your Dr. mentioned that to you? My dh's cousin's little girl goes to Cincinnati to see a specialist for treatment and to keep up with the tumor growth and she has high hopes that this will make a major difference in her dd's life.<br><br>
Since her epilepsy is caused by structural abnormalities I honestly dont see how changing of diet would help but then I am not a Dr <img alt="redface.gif" class="bbcode_smiley" src="http://files.mothering.com/images/smilies/redface.gif"><br><br>
Good luck to you.
 

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<p>Have you looked at any clinical trials or newer treatments? There are some things out there that look really promising for TSC specifically (rapamycin for example). </p>
 

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Discussion Starter #5
<p>Well first off, i'm not "against" seizure meds. She's currently on them, and has been for the last ten months since she was diagnosed. If i didn't realize the need for them, she wouldnt BE on them. But the seizure meds, as I know as well as anyone, have NASTY side effects WHICH CAN KILL HER. If i can get her off of them or on a lower dose even, or on not as many (she's currently on FOUR seizure meds, at the highest dose), why would i NOT do that? And, it *is* possible for her to have TSC and not have seizures. People have achieved seizure freedom and weaned off drugs while still having the tumors there, though it's  rare. I realize it's an uphill battle, but it is not impossible. We've beat the odds time and again with her since her birth from what people told us would be her future, and i think that is in large part because of several natural lifestyle choices that are too complex to get into here. They may not "cure" her, but they don't set her back like so many mainstream lifestyle health choices would (for instance, eating foods with high sugar, msg, aspartame, etc messing with her already messed up brain chemistry)</p>
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<p>As for ketogenic diet, I, for one, do not consider that a "natural" option, as it is basically starving the child, limiting not only carbs but also liquids and proteins and feeding basically nothing but eggs and mayonnaise all day long.</p>
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<p>As for the recent approval of a drug for use on shrinking TSC tumors, it only works on one type of TSC tumor, one which she currently does not have. It also has a lot of risky side effects and is only used for patients who are at hte point they need brain surgery but are not good candidates for surgery for whatever reason. We're not to that point yet. (though i'm obviously glad they have this option now and who knows how many more options we'll have as Audrey ages?! i was very excited to hear about the drug, even if it doesnt help us currently).</p>
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<p>thanks though for the comments; sorry if my response sounds hostile; it's not intended to be, it has just been a very long day.....</p>
 

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<p>I think you need to focus on the here and now instead of focusing on a slim chance of getting her off meds any time soon.  That sounds harsh, and I don't mean to be harsh at all, but I think you're missing the forest for the trees.  Yes, seizure meds undeniably have their risks including risk of death, but so do uncontrolled seizures.  It sounds like she has an active seizure disorder that is progressing, and as hard it is, it doesn't sound like now is the time to reduce or eliminate meds.  She needs to be stabilized first.</p>
 

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Discussion Starter #7
<p>not helpful. at all. you clearly didn't read anything I said. Her meds are not stabilizing her seizures EITHER, so I dont know why you're acting like western meds are the miracle cure and anything else is wreckless. I'm looking for something to STOP her seizures first and foremost, and also with fewer side effects, which is the GOAL of epileptology. Not just stop seizures, but to do so with fewer/no side effects. That is the goal even of western medical neurologists. But NEITHER is happening right now, though we seem to be having success moderately with Banzel.</p>
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<p>Thanks for not at all answering my question. I'm my daughter's strongest advocate, and i'm not trying to just get her off meds. I'm trying to do what is best for her to have the best outcome possible. The meds are doing nothing but increase side effects and NOT stop seizures. I think then it's time to look at other options which I thought i'd be more likely to find here. Guess I was wrong.</p>
 

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<p>Mama, I just wanted to reply only to say I'm sorry you & your daughter are having to deal with all of this! It sounds hard & complicated, and I don't have any insight about the specific questions you ask, but don't give up on finding support from natural mamas here. It's a big community, some people may be coming from a different perspective, but there may also be others with suggestions you are looking for.</p>
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<p>How lucky for your dd to have a strong advocate and loving mother in you. I hope your move will find some increased options for you. Maybe even a naturopath at a reasonable distance from Las Vegas (CA maybe?) would consult with you. Also sounds like a good idea to try pursuing chiropractic & accupuncture as you've said, I hope that proves some help to her.</p>
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<p>Good luck, mama. Hang in there.</p>
 

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<br><br><div class="quote-container"><span>Quote:</span>
<div class="quote-block">Originally Posted by <strong>asherraifsmom</strong> <a href="/community/forum/thread/1281063/looking-for-natural-cures-for-epilepsy-caused-from-structural-brain-abnormalities#post_16065155"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a><br><br><p>I had read that turmeric is good at relieving the cognitive-impairing side effects of the oxidation caused by AED's, but I cant find any info on HOW to administer it to my daughter, how much, etc.</p>
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<p>Other options are things there's just no way i'm going to get down a 14 month old's throat. Someone mentioned taking a few tablespoons a day of coconut oil. I know coconut oil is a wonder food/drug, but how on earth do you get straight coconut oil down your baby's throat? Same goes with many of these other supplements.</p>
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<p>Wow, it's kinda amazing how people have managed to judge you without bothering to read your posts. Sad. Really sad.</p>
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<p>Onto another topic, ie. your actual questions:</p>
<p>I love Turmeric, it's one of those super great foods that have been used medicinally since... forever. Because it's really a food, I wouldn't worry about using too much. I can see your dilemma of trying to get it into your kid. What if you mixed Turmeric powder with coconut oil (if you warm it slightly - it's liquid) and try using a regular medicine syringe? Just a thought...</p>
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<p>I know there are many wonderful anti-seizure herbs, but it gets complicated to mix them with meds - you really need to find someone well versed in interactions. Maybe a pharmacist who is familiar with natural therapy might be able to help you...<br>
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<p>Good luck!</p>
 
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