Tonic Seizure HELP!!!!!!

Christina - posted on 07/14/2009 ( 7 moms have responded )

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I have a two year old daughter that suffers from Tonic Seizure disorder. She is on Clozapan, phenobarb, and lamictal. Right now none of these meds seem to be doing anything but causing horrible side effects, well mostly the lamicatal. She has been on Topamax and Keppra and they did not help either. She has up to 30+ seizures a day lasting anywhere between a few seconds to a few minuets. Her doctors don't seem to know a damn thing on how to help her. They want to try depikote but the side effects are very scary, liver failure and pancreatis. Anywho have any suggestions or well anything on the subject, please send it our way. We need some help!

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Successalignedmarketing - posted on 06/22/2011

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A good friend of mine (physician and Ph.D.) told me that NeuroFeedback has been very successful in helping kids and people with seizure disorders. I'm not sure if that will help, but you may want to see if there is an expert in your area that is proficient with it. There's some great information on http://www.eeginfo.com/

Also, for the person in Cleveland -- research mold exposure in your home and area. We know an air quality specialist that was called to Cleveland to investigate 30+ SIDS deaths in a 5 zipcode area. They attributed them to a very toxic mold in the area. If you google seizures and mold you'll find that people with seizure disorders typically seize more when exposed to mold and other toxins. Not sure this is relevant for you, but wanted to make you aware.

Good luck, Christina!!

Amanda - posted on 06/11/2011

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My parents put me on Depakote when I was 12, when my seizures got really bad because of my menstrual cycle and hormones each month. I have been on it since then and I'm 33, except for the time I tried to come off to get pregnant. It works great. I have never had liver problems. My doctor said if people do have problems they are in the beginning of taking depakote. I don't know if he was right, but watch carefully in the beginning and give her some activated charcoal if you have any problems. It will clean the depakote right out. You get it from a health food store.

User - posted on 06/11/2011

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Hi, im so sorry to hear what your going through, but we have a 4 yr old son that has had epilepsy for nearly a year. He has tonic clonic and absences and we have also had a really rough time sorting meds out and just don't know what to do or where to go, the doc just keep passing the buck. So i totally know where your coming from, our sons seizures are not controlled yet and the side effects of his meds are awful and so bad that i did'nt want to send him to preschool any more. So my thoughts are with you :)

Brandee - posted on 08/02/2009

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Wow - I now feel like I have a twin in the world. My son Ayden(2 in Nov.) went months without seizures and then in June started seizing like crazy mostly tonic and myoclonic. We changed neurologist, went to Riley for a consult, and now(with lots of drama,and persistent mother moments) we are scheduled for the Cleveland Clinic. We have been on Phenabarb, Keppra, Dilantin, and Resperdol(one doc thought it was movement disorder). Now he is on Topamax, Klonopin, and Depakote (we just changed to liquid from sprinkles because of $$) He gets CBC/liver/med levels every few weeks and so far we are ok, but still seizing 10-15 times a day. Honestly, I have to say keep asking questions and start looking beyond your current doctors. When we got our call from Cleveland this huge weight was lifted off my shoulder now I just feel like I am finally getting him some real help. My favorite line from the medical field is "well these types of seizures are not really medically harmful"- To which I want to reply GLOBALLY DELAYED, NONVERBAL!!! how can he develop and move beyond his delays if he is constantly seizing??? I wish you the best and hope you find some answers soon. Remember quality of life is what you have to advocate for! Good Luck!

ToyNera Crystal - posted on 08/01/2009

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My son was having tonic seisures, and lots of other types of seisures. He had also tried lamictal, phenobarb, clonazapan, and others I can't remember. They did nothing good for my child, just caused more damage. My son hasn't had a seisure now for 2 years thanks to the ketogenic diet. It's helped his brain work alot better too! We're almost finished retraining his brain on the diet, and will slowly decrease fat and increase his protein and carbs until he can eat whatever he wants again (within reason lol). Here is a link to find out more about it http://epilepsy/treatment_ketogenic_diet Its done WONDERS for us! Goodluck!!

Julie - posted on 07/31/2009

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My daughter who is now 16 was diagnosed with Epilepsy at 18 months. We have been through the same thing but for us Depakote was the answer. She has been on it for 6 yrs without any of those side effects, her neurologist closely monitors her, doing blood work every 3 months. I am so sorry that you are going though this.

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