Well, Stacy was very determined that her new diet experiement was going to work immediately and decided to start taking 100mg of Dilantin at night instead of the 300mg that she had been taking in spite of my most stringent objections, pleas and arguments. I asked her to give her body some time to adjust to the new diet and start weaning off the Dilatin in several weeks if the diet helped her achieve control of her somewhat daily jerk seizures.
In any event, she felt great Monday through Wednesday and only jerked one time. Unfortunately, she had a grand mal/TC seizure Wednesday night around 3:30am. She proceeded to have 6 more grand mal/TC seizures just about 20 minutes apart. She never regained consciousness between the seizures. I called 911 around 5:30am after the 7th consecutive seizure.
She had one more seizure in the ambulance on the way to the ER room. They gave her a shot of something – I don’t remember the name of it – and said it helped cut the seizure short. Once in the ER, they hooked her up on an IV and gave her Cerebrex again.
The initial blood test they ran showed that Stacy’s blood Dilantin level was a “3″. The doctor said it should have been between “10″ and “20″ for a therapuetic dose. The staff at the hospital somewhat remembered us from our first trip there last November. Fortunately, they agreed that she didn’t need another round of X-Rays, CT scans, MRIs, etc. They just helped her get her Dilatin levels back up.
She was admitted to the hospital from the ER and spent the night there. She was released this morning and is functional but moving slowly today.
#1 by capri142 on February 21st, 2006
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Hi there, I’ve been reading about Stacy’s epilepsy “adventure’s” and just wanted to say a few things. First I’m 59 anf have lived with epilepsy all my life. I’ve tried just abpout everything possible there is to try. Diets, Acupuncture, Various medications, etc. I can tell you right now, there are no diets that will stop or eliminate seziures. Alcohol and Caffiene make them worse. I’ve also found that cutting back on refined sugar seems to help me. I don’t understand why stacy is only on 300mg of dilantin, that’s not very much and reducing it to 100 was just asking for trouble as she found out. Also Dilantin is usually used in combination with other anti-seziure medications (there are lots of them). I am currently on Tegretol and Topamax and they seem to work well for me. Stacy needs to see a neurologist reguarly and keep a journal of her seizures and intensity of same. I hope You don’t feel that I have been intruding. I wish her the best. Regards Phil
#2 by Bernard on February 22nd, 2006
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Hi Phil. It doesn’t cost anything to try the diet and see, so we’ll see how it goes.
300mg of Dilantin is sufficient for her to achieve seizure control (if she just accepts that she has to take the pills). Stacy is also sensitive to alcohol, caffeine and simple sugars.
#3 by kpatterson on March 17th, 2006
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my daughter Taylor is 13 yrs old she was diagnosed with epilepsy at age 8, she has been on many medications and still having grandmal and petimal seizures. Yesterday I took her to a new neurologist and finally someone understands, she has medically refractory seizures, she does not respond to medication.One med. that she never had was Dilantin and when I asked the doc. if maybe we should try that he said for her type of seizures it would not help her at all. Stacy is having grandmal after grandmal. Has she ever been on any other medication? The doctor also talked about VNS therapy which I am researching. If anyone has any info to share about it I would appreciate it.The neurologist also said the Atkins diet seems to be helping other epileptics so maybe cutting out the sugars and caffeine is a good idea for anyone.Taylor is also depressed and angry and not doing well academically, the doctor says it is as much from the epilepsy as it is also from the medication, VNS therapy is supposed to help also with the depression.I am scared to put my daughter through surgery as scared as I am when she has seizures, but I am leaning towards it at this point.
#4 by Bernard on March 20th, 2006
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Hi K.
Yes, Stacy has tried several meds including zorontin, neurontin, depakote/epilim and a handful of others that I can’t remember off the top of my head.
Doctors don’t like to prescribe Dilantin so much these days. I’m not sure if it’s because the side effects and adverse effects of long term use are better understood than with newer drugs, or just because it isn’t pushed by the pharmas in favor of newer drugs (since the patent on it expired several years ago and it’s cheap now).
#5 by kpatterson on March 23rd, 2006
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my mom works for a Doctor and she says it’s unbelievable how much the pharmacy companies push these new drugs. Is she a candidate for surgery? is there a focal point in the brain from scans that they know where this is coming from? with my daughter there is no focal point so she could not have the surgery but she is a candidate for the VNS therapy which I am still researching. I hope Stacy gets the help she needs, its just so much to go through.
#6 by Bernard on March 24th, 2006
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Hi K., I don’t think Stacy has ever been tested for surgery candidacy. Prior to a year or so ago, her seizure pattern was not severe enough to ever consider it.
#7 by kpatterson on March 24th, 2006
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I really hope the best for Stacy, it seems to be all just a guess try this and try that, sometimes I feel like my daughter is a experiment. But my sister is also epileptic and she grew out of it. She was on Dilantin and that was the only drug she ever needed. Everyone is different, it does help to see what others have tried.
#8 by Emeriol on April 14th, 2006
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Kpatterson,
I recently had VNS surgery. So far it is non-conclusive as to whether it works, but I have only had it 3 months. Check out my website for more information about what you might expect from surgery & side effects. I wish you and your daughter the best!
Bernard,
I hope that Stacy’s seizures reduce. What other medications does she take. Everyone is different, but when I was on Dilantin, it only made my seizures worse. Has she been on Keppra or Tegretol or Lamictal before?
-Emeriol
http://scott-lwe.blogspot.com
#9 by Bernard on April 18th, 2006
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Thanks Emeriol, Stacy has been on a number of medications. I am not sure if she has tried the 3 you mentioned.