Guest guest Posted January 19, 2001 Report Share Posted January 19, 2001 Hi Casey I have no experience with seizure disorder but I wish you luck with the test results. Any news yet? Carolyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 : My niece sleeps with her eyes so far open she practically looks awake! Just don't let her big brother take pictures of her asleep (to make fun of her with) when they are older, as my nephew did! She won't like that at all! The eyes rolling could just be REM sleep or the eye trying to " get away " from any light. (mom to Kate, born 9/19/02; and , age 3-3/4 -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Macey sleeps like this. Ursula Holleman Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 That is funny, because Cassie sleeps like this also. Belinda Rose, Mom to Allyssa and Cassie, igg immunodeficient, asthma, sinusitis, IVIG for 6 years, heart condition Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2002 Report Share Posted October 31, 2002 > I've read a lot on this board about seizures, so I know many of you have experience with them and may be able to give me some info. I have no idea if this is related to seizures, or maybe just poor muscle control in the eyes ... or something. is 2-1/2, and very frequently when she is asleep one eyelid is partially open. It always freaks me out a little, and I close her eyelid. Today she was napping and I looked at her, and both of her eyelids were slightly open, and her eyes seemed to be rolled in the back of her head. Maybe during REM sleep this happens to some people? Now I keep checking on her while she sleeps, scared to death that the eye thing is indicative of a medical problem, such as seizures. Is this strange, or do some people sleep with their eyelids slightly open? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Blake Sleeps this way. except both of his eyes are half open. When Blaek had surgery last year, the ENT that did the surgery told not to be scared if he were to come out of surgery with some muscle weakness in the facial area due to the type surgery that he had( Totla Ear Canal Wall Breakdown with Complete Mastiodectomy). Well dad nor I were surprised at all by Blake sleeping with his eyes halv open and rolled back in his head. But the ENT was. He had thought that he did cause severe damage to the facial muscle. The reason being is because as Blake was being rolled back to his room, one of the Nurses was stedily talking to Blake. He would not answer her. The Dr. said that may have been because of the nerve damage. I looked at him and told him, Blake is asleep. He ALWAYS sleeps with his syes half open. Boy are you talking relief. and I cracked up later because you could see the color actually return to the Dr.s face when we told him this. He said, " He always slleps like this? " " YEP! Every day of his life! " Later he told us that the reason he felt the facial nerve had been damaged was because he had to leave that nerve(which is very close to the inside of your ear) uncovered hoping Blake would make enough scar tissue to cover it up(he later had to create a cover for it due to Blake's immune system). We were told that the eyes opining whils sleeping was due to poor muscle tone. eventually as he grows older, his muscles will become coordinated enough to close completely. (mom to Blake 10-1/2 yr. CVID/Complete T-Cell Dysfunction) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2002 Report Share Posted October 31, 2002 Hi , My older sister has slept this way all of her life (and she has no deficiencies). She would actually sleep with her eyes completely open sometimes. One night her eyes would be rolled back in her head and the next night she would just be staring straight ahead. We used to share a bed and at first it was a bit creepy to roll over and feel like someone is laying there staring at you, or worse yet, just seeing the whites of her eyes. Of course, in true sister form (once I learned she was okay), I would roll over and push her real hard in the middle of the night and tell her to quit making faces at me. My sister is 36 years old now and her husband says she still sleeps this way. My oldest son would sometimes sleep with his eyes partially open and either rolled back in his head or rolling all around. My doctor told me that alot of people do this when they are dreaming. Of course I am no doctor, but I think is okay. I would mention it to her doctor on the next visit, just to give yourself peace of mind. Hope this helps, (mom to Adam, age 11, , age 8, and Jarod, age 14 months -- recently diagnosed with Transient Hypogammagoblinemia, pending further blood tests, and asthma all of his life). > I've read a lot on this board about seizures, so I know many of you have experience with them and may be able to give me some info. I have no idea if this is related to seizures, or maybe just poor muscle control in the eyes ... or something. is 2-1/2, and very frequently when she is asleep one eyelid is partially open. It always freaks me out a little, and I close her eyelid. Today she was napping and I looked at her, and both of her eyelids were slightly open, and her eyes seemed to be rolled in the back of her head. She was breathing okay, but when I saw her I screamed and shook her awake, and she looked at me like " why are you waking me up? " . My father died from a heart attack; I found him and that is the way he looked. Today was the second big scare of my life, but thank God woke up. My 4 yr old son's eyes are always tightly shut when he is sleeping. Is this weird, or could she be having some sort of seizure while she's sleeping? Maybe during REM sleep this happens to some people? I can't really find anything on the internet that explains this type of thing. Now I keep checking on her while she sleeps, scared to death that the eye thing is indicative of a medical problem, such as seizures. Is this strange, or do some people sleep with their eyelids slightly open? > > > > > ------------------------------------------------------------------- ------------- > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2002 Report Share Posted October 31, 2002 From: Beth, Mom to Wade,15 (CVID,etc.) Too weird... has ALWAYS slept this way from day one & he's almost 16 years old! >From: rrdgtchr@... >Reply- > >Subject: Re: Seizures? >Date: Thu, 31 Oct 2002 07:07:37 EST > >That is funny, because Cassie sleeps like this also. > >Belinda Rose, >Mom to Allyssa and Cassie, igg immunodeficient, asthma, sinusitis, IVIG for >6 >years, heart condition > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2002 Report Share Posted November 1, 2002 My 6yo slept with her eyes partially open until she was at least 2 years old. Her eyes were rolled back into her head, too. It looked weird, but she was very asleep. She doesn't appear to do this as often now, but, of course, I don't observe her sleeping all that often any more either. Pam mom to 4 Rebekah, 3, CVID Seizures? I've read a lot on this board about seizures, so I know many of you have experience with them and may be able to give me some info. I have no idea if this is related to seizures, or maybe just poor muscle control in the eyes ... or something. is 2-1/2, and very frequently when she is asleep one eyelid is partially open. It always freaks me out a little, and I close her eyelid. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Sherry I am having similar symptoms with the dizziness. I had mine while driving and it felt as if a jolt ran through my head. It only last a minute or so but since that time I have felt very off balance. My LFTs were normal as of December 11th. I dont know if this is liver related or not. I have seen an ENT and he says no ear problem. I am being evaluated for other autoimmune issues, but to be honest with you I also think this is liver related. Rheumy sent me back to the liver doctor when I told him that I have been so dizzy. Let me know what you find out and I will do the same. Im seeing an ocular immunologist tomorrow at Mass Eye and Ear. Take care Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Last week I was very very dizzy. I had what seemed to be to me, a seizure of some sort. I ended up falling and hurting myself. My body jerked one way then it jerked another then my knees buckled. I stayed conscious and kept thinking "what the heck is going on????" If I had been outside when it happened I would have seriously thought I had been shot. It only lasted a few seconds but I remained very dizzy for the next 12 hours and I could not function on my own. Then I was fine. I don't know if it is liver related or not. I am going to the docs for balance testing tomorrow. My neuro doc told me to treat it as an emergency and go streight to the ER the next time it happened. Any body have anything like this??? I am not on any medications that could have caused this. Last summer when my enzymes were moderatly high I had something similar happen . They thought I had a stroke but all the test came back ok. It took 3 months to be able to walk streight with out falling over. The imbalance was always there. Then one day it just wasn't there any more and I could walk with out help. It was so weird. I am not driving until I see my docs I can't imagian it happening while I am driving a car. Sherry Be Dead to your past, be Alive in the present and be Excited about your future! ~Sherry Find out everything you need to know about Las Vegas here for that getaway. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Hi Sherry, I am sorry to read of you having this "dizzy " spell. I myself get off balance often. I feel a little fuzzy headed and weird. That's about the only way I can describe it. I have told my MD. about it and she thinks I have an inner ear imbalance. I do have problems with earache in the left ear. However, when I was at Mayo Clinic, a young woman I met up there that has the same liver disease I do, asked me if I became "unbalanced" at times..What I mean is dizzy.. (lol) Sometimes I feel I am "unbalanced " in a mental capacity too. (lol). I am just wondering if it is liver related. Best wishes, Lyn from Ark. Sherry O'Shea <sirkotbe@...> wrote: Last week I was very very dizzy. I had what seemed to be to me, a seizure of some sort. I ended up falling and hurting myself. My body jerked one way then it jerked another then my knees buckled. I stayed conscious and kept thinking "what the heck is going on????" If I had been outside when it happened I would have seriously thought I had been shot. It only lasted a few seconds but I remained very dizzy for the next 12 hours and I could not function on my own. Then I was fine. I don't know if it is liver related or not. I am going to the docs for balance testing tomorrow. My neuro doc told me to treat it as an emergency and go streight to the ER the next time it happened. Any body have anything like this??? I am not on any medications that could have caused this. Last summer when my enzymes were moderatly high I had something similar happen . They thought I had a stroke but all the test came back ok. It took 3 months to be able to walk streight with out falling over. The imbalance was always there. Then one day it just wasn't there any more and I could walk with out help. It was so weird. I am not driving until I see my docs I can't imagian it happening while I am driving a car. Sherry Be Dead to your past, be Alive in the present and be Excited about your future! ~Sherry Find out everything you need to know about Las Vegas here for that getaway. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2004 Report Share Posted January 15, 2004 Phew! I just returned from several days of docs and tests. My hep is next week. The vastibular balance center tested my inner ear as well as vision and balance. They said that it was not because of my inner ear , balance, vision or posture. (tons of things they looked at.) They told me that when my head is in a certain position they found that I have some kind of pressure affecting the base of my brain and they told me I was in the right docs office since it was most likly neurological. I had some spells they thought were strokes last summer and the area affected was the base of my brain. So it makes sense. I see my Neuro Feb. Mean while I am to go to the ER ASAP if I have another spell. I am so exhausted I think I will go back to bed. Have a happy rest of the week all! Sherry Be Dead to your past, be Alive in the present and be Excited about your future! ~Sherry>From: Stidham >Reply- > >Subject: Re: [ ] seizures? >Date: Mon, 12 Jan 2004 09:27:04 -0800 (PST) > >Hi Sherry, >I am sorry to read of you having this "dizzy " spell. >I myself get off balance often. I feel a little fuzzy headed and weird. That's about the only way I can describe it. I have told my MD. about it and she thinks I have an inner ear imbalance. I do have problems with earache in the left ear. >However, when I was at Mayo Clinic, a young woman I met up there that has the same liver disease I do, asked me if I became "unbalanced" at times..What I mean is dizzy.. (lol) Sometimes I feel I am "unbalanced " in a mental capacity too. (lol). I am just wondering if it is liver related. >Best wishes, >Lyn from Ark. > >Sherry O'Shea wrote: > >Last week I was very very dizzy. I had what seemed to be to me, a seizure of some sort. I ended up falling and hurting myself. My body jerked one way then it jerked another then my knees buckled. I stayed conscious and kept thinking "what the heck is going on????" If I had been outside when it happened I would have seriously thought I had been shot. It only lasted a few seconds but I remained very dizzy for the next 12 hours and I could not function on my own. Then I was fine. I don't know if it is liver related or not. I am going to the docs for balance testing tomorrow. My neuro doc told me to treat it as an emergency and go streight to the ER the next time it happened. Any body have anything like this??? I am not on any medications that could have caused this. > >Last summer when my enzymes were moderatly high I had something similar happen . They thought I had a stroke but all the test came back ok. It took 3 months to be able to walk streight with out falling over. The imbalance was always there. Then one day it just wasn't there any more and I could walk with out help. > >It was so weird. I am not driving until I see my docs I can't imagian it happening while I am driving a car. > >Sherry > > > > > >Be Dead to your past, be Alive in the present and be Excited about your future! ~Sherry > > > >--------------------------------- >Find out everything you need to know about Las Vegas here for that getaway. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2004 Report Share Posted January 15, 2004 Hey , Let me know what you find out. The Vistibular Balance Center here said I didn't have any trouble with my ears either that checked out ok. But they did find that I had a certain reaction when my head was in a certain positin and that it was at the base of my brain. So neurological. I seem to be having these spells more often than I was. When I am dizzy I can not stand up at all. I am pulled to the left side and down. When that wears off I can't walk in a streight line with out running into stuff. Geezs I hope you will be doing ok! I hate being dizzy!!!!!!! I deal with pain better than I deal with this. Hope you get to feeling better! Sherry Be Dead to your past, be Alive in the present and be Excited about your future! ~Sherry>From: TrixTrix1980@... >Reply- > >Subject: Re: [ ] seizures? >Date: Mon, 12 Jan 2004 13:00:53 EST > >Sherry > >I am having similar symptoms with the dizziness. > >I had mine while driving and it felt as if a jolt ran through my head. > >It only last a minute or so but since that time I have felt very off balance. > >My LFTs were normal as of December 11th. > >I dont know if this is liver related or not. I have seen an ENT and he says >no ear problem. I am being evaluated for other autoimmune issues, but to be >honest with you I also think this is liver related. Rheumy sent me back to the >liver doctor when I told him that I have been so dizzy. > >Let me know what you find out and I will do the same. Im seeing an ocular >immunologist tomorrow at Mass Eye and Ear. > >Take care >Tracey Let the new MSN Premium Internet Software make the most of your high-speed experience. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2005 Report Share Posted November 3, 2005 In a message dated 11/3/2005 9:56:15 PM Eastern Standard Time, Foxhillers writes: In a message dated 11/3/2005 6:55:20 PM Eastern Standard Time, littleone849@... writes: Hello everyone, I'm Masen. I live in Michigan and I'm 16 years old. Last year I was having seizures. From October to February. Then a couple months ago I woke up in the middle of the night and I couldn't move. I could only open my right eye. I couldn't move any other part of my body and I wasn't shaking like I did when I was having seizures. I try to move my hands and it feels like I am but I'm not because I tried to put it out in front of my eye and I wasn't moving. It feels like it lasts forever. Then I snap out of it. And I have a very bad headache on the left side of my head. And I feel like I could sleep the entire day. It has happened several times lately and I'm not sure what's happening. Do you have any thoughts? Masen .. .. >>> Masen I live in Micigan, too. I know this is very scary for you. The is a kind of sleep disorder that you are like between asleep and awake that is similar to what you describe. Are you eating a good diet and taking nutritional supplements, especially B vitamins, Magnesium and fish oil? These supplements helped my son a great deal. Please tell you folks and contact your doctor. Write down what you experienced right now in as much detail as possible while you are remembering stuff. Send this to your doc. Keep in touch and let us know how you are doing. mjh " The Basil Book " http://foxhillfarm.us/FireBasil/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 mjh, I don't eat well at all. I have Gastroparesis so I am limited extremely in diet. Right now I manage yogurt, pudding, and lots of chicken. I am taking a Vitamin B6 supplement. Thanks, Masen foxhillers@... wrote: In a message dated 11/3/2005 9:56:15 PM Eastern Standard Time, Foxhillers writes: In a message dated 11/3/2005 6:55:20 PM Eastern Standard Time, littleone849@... writes: Hello everyone, I'm Masen. I live in Michigan and I'm 16 years old. Last year I was having seizures. From October to February. Then a couple months ago I woke up in the middle of the night and I couldn't move. I could only open my right eye. I couldn't move any other part of my body and I wasn't shaking like I did when I was having seizures. I try to move my hands and it feels like I am but I'm not because I tried to put it out in front of my eye and I wasn't moving. It feels like it lasts forever. Then I snap out of it. And I have a very bad headache on the left side of my head. And I feel like I could sleep the entire day. It has happened several times lately and I'm not sure what's happening. Do you have any thoughts? Masen .. .. >>> Masen I live in Micigan, too. I know this is very scary for you. The is a kind of sleep disorder that you are like between asleep and awake that is similar to what you describe. Are you eating a good diet and taking nutritional supplements, especially B vitamins, Magnesium and fish oil? These supplements helped my son a great deal. Please tell you folks and contact your doctor. Write down what you experienced right now in as much detail as possible while you are remembering stuff. Send this to your doc. Keep in touch and let us know how you are doing. mjh " The Basil Book " http://foxhillfarm.us/FireBasil/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 Hi Masen: I am sure this is scary for you. Only doctors can give you medical advice. But I am sending you some sites that may give you some additional information. Many people have gotten help through some of these treatments. Here is what I would do if I were you. !.- Talk to your parents or a responsible adult. 2.-Pray to God that he will bring to you the information and people you need to cure you. Imagine yourself completely healthy everyday! 3.- See a Doctor 4.-Eat only healthy food. Read about nutrition and allergies related to seizures. 5. Be your own detective. Have your Mom or Dad help you. Read everything you can about your condition. Write everything you do and eat the day you have your seizures and the day or two before. See if you can find patterns or things that trigger them. AVOID THE STUFF! Look around your house and school or work. See if there are any chemicals that could be triggering them. If you are using drugs STOP NOW! If you had a head injury, look into neurofeedback. 5.- Ask this question again later. Other people come in and read here and have other info. 6.- Never give up! 7.- Tell us what you find and so others can be helped! Okay Mr. Detective here is something to think about... Have you seen a doctor? Do your parents know? Have you had any falls or injuries before your seizures started? Were you sick in any other way before your seizures started? Is there anyone else in your family who has this problem? Did your seizures start all of a sudden or have you always had them? Are you experimenting with drugs? Have you been exposed to chemicals or pesticides? http://curezone.com/dis/1.asp?C0=130 http://home.iprimus.com.au/rboon/Epilepsy.htm http://www.caffeineweb.com/NASA%20Study.htm http://home.iprimus.com.au/rboon/NeurofeedbackQEEGbased.htm http://www.healthsentinel.com/org_news.php?id=058 & title=Stopping+epileptic+seizu\ res+using+omega-3%2C+vitamin+E%2C+diet%2C+and+more & event=org_news_print_list_ite\ m Okay sweetie, Good Luck! Masen Greene <littleone849@...> wrote: Hello everyone, I'm Masen. I live in Michigan and I'm 16 years old. Last year I was having seizures. From October to February. Then a couple months ago I woke up in the middle of the night and I couldn't move. I could only open my right eye. I couldn't move any other part of my body and I wasn't shaking like I did when I was having seizures. I try to move my hands and it feels like I am but I'm not because I tried to put it out in front of my eye and I wasn't moving. It feels like it lasts forever. Then I snap out of it. And I have a very bad headache on the left side of my head. And I feel like I could sleep the entire day. It has happened several times lately and I'm not sure what's happening. Do you have any thoughts? Masen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2005 Report Share Posted November 15, 2005 In a message dated 11/15/2005 7:33:18 AM Eastern Standard Time, littleone849@... writes: mjh, I don't eat well at all. I have Gastroparesis so I am limited extremely in diet. Right now I manage yogurt, pudding, and lots of chicken. I am taking a Vitamin B6 supplement. Thanks, Masen .. ..>>>> Sorry to hear about your gut problems, please know that vitamin B6 needs Magnesium to work in your body and that B vitamins should be taken with the whole B complex and not just one B vitamin alone. My late son got B-100 complex three times a day plus B6, 100 mg three times a day Also Magnesium, 200 to 400 mg three to four times a day Fish oil, 3 grams three times a day Lack of Magnesium alone can cause seizures. mjh " The Basil Book " http://foxhillfarm.us/FireBasil/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2007 Report Share Posted May 5, 2007 Seizures can be confusing as well as scary. It's good that he's getting an EEG done soon. My son is almost 11 and has had seizures on average about one a year. Most of his have been with fever. Although he had 2 that a cause could not be explained. HTH Rhonda in CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2007 Report Share Posted May 5, 2007 Hi everyone, My almost 6-year-old son has now been taking Houston enzymes - AFP Peptizide and Zyme Prime - for approximately three weeks. He has done incredibly well - his stools now look entirely normal, formed, not floating, etc. For a week and a half he has eaten all his food entirely by mouth - prior to enzymes he was still 100% tube fed with very limited interest in or willingness to try oral eating. His tummy is no longer bloated after meals. On Thursday he had a major seizure - the first one of his life. He had an EEG Friday morning that was very abnormal. I am not suggesting that the enzymes caused the seizure, as he has a very complex medical history. I am just wondering if anyone else has experienced this - if there could be any connection at all since the change in his digestion is so apparent? He has actually gained about 2 1/2 pounds since we started the enzymes so he clearly is absorbing the food much better. Again, not blaming or stopping the enzymes at this point - he is at higher risk of seizures due to his extreme prematurity and also I know seizures are common in children with autism - just wondering what other experiences have been in this area. Thanks so much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2007 Report Share Posted May 10, 2007 , First, congratulations on such success with your son's eating. You must feel wonderful about that :-) IME, seizures can be related to viruses. There is a chance, especially if you've given protease on an empty stomach, or more protease than was needed, that the enzymes are acting against viruses. My son has had seizure activity during two periods of his life: both time when we were using antiviral protocols. I've copied and pasted some seizure information below. It is simply a bunch of stuff I put together in a file (in not a very sensible fashion--just all stuck together. Sorry). It may hold some sort of clues for you. Anita Below is a bunch of cut and paste information on seizures. I'm pretty sure I got most of it from autism treatment using ONIBASU to search for it. I hope it makes sense and might be of some help. How do you know the seizures were gone? My son has been chelated for four years total, on enzymes all the time. On specific carb diet. Started viral treatment 5 years ago on seizure meds and guess what, overnight sleeping eeg showed he was having continuous spike and wave during slow sleep in frontal lobe and temporal. If your child is seizure prone try only feeding him or her foods w/ glycemic index of less than fifty. They are realizing seizures are being controlled by stabilizing blood sugar level, spiking of blood glucose can cause seizure activity which explains why some of our kids react to food w/in 15 minutes of ingesting it. We just started my son on lamictal for seizures and I am only given foods under the 50 glycemic index and he is better than ever. He is finally being transformed. This is like a miracle. I hope it continues but I will keep people posted. Jack is 9. http://tinyurl.com/9amcc (text below) Stopping epileptic seizures using omega-3, vitamin E, diet, and more Roman Bystrianyk, " Stopping epileptic seizures using omega-3, vitamin E, diet, and more " , Health Sentinel, October 20, 2005, Recently a parent brought their child to a neurologist because of concerns of a possible seizure disorder. After an overnight EEG, which is a test in which electrodes are placed on the head to measure electrical activity produced by the brain, the neurologist determined there were some irregularities and that seizures were possible in the future. The parent asked a few questions including whether there was anything they could do with diet to prevent that possibility. The neurologist replied that aside from the Ketogenicdiet, which would only be considered in extreme cases, that there wasn?tanything that could be done. I decided to see what information I could find on seizures and epilepsy. According to the website epilepsy.com: ?There is a fine balance in the brain between factors that begin electrical activity and factors that restrict it, and there are also systems that limit the spread of electrical activity. During a seizure, these limits break down, and abnormal electrical discharges can occur and spread to whole groups of neighboring cells at once. This linkage of electrical discharges creates a " storm " of electrical activity in the brain. This is a seizure. When a person has had at least two of these seizures, that's called epilepsy.? They also note that essentially many times the cause was unknown: ?The reasons why epilepsy begins are different for people of different ages. But what's true for every age is that the cause is unknown for about half of everyone with epilepsy. Children may be born with a defect in the structure of their brain, or they may suffer a head injury or infection that causes their epilepsy. Severe head injury is the most common known cause in young adults. In middle age, strokes, tumors, and injuries are more frequent. In people over 65, stroke is the most common known cause, followed by degenerative conditions such as Alzheimer's disease.? According to the website that apart from the Ketogenic diet there wasn?t much that anyone could do to prevent seizures. I decided to take a trip to a local medical library to start my own research to see what I could come up with. I spent quite a few hours the first night searching and sifting through studies from a large number of medical journals. I did that over a number of weeks and accumulated a large number of studies that provided some amazing information. Omega-3 Fatty Acids One of the first studies I discovered was from the journal Epilepsia (1). The authors described that omega-3 fatty acids (or n-3 PUFAs) are essential for normal brain development and that a deficiency in these fatty acids can?contribute to the emergence of neurologic dysfunctions?. With respectto epilepsy, ?recent studies in animal models have shown that n-3 PUFAs can raise the threshold of epileptic seizures.? Based on this knowledge the study authors provided a spread of 65% n-3 PUFAs (46% DHA, 18% EPA, 1% alpha-linolenic acid) plus 100 IU of vitamin E to 5 patients with severe seizure disorders. The spread (about 5 grams) was eaten at breakfast by 5 patients each day for 6 months. Although this was a small study, the results were nothing short of dramatic. The frequency of grand mal seizures (grand mal seizures are characterized by sudden loss of consciousness followed by violent full-body convulsions lasting several minutes) before the omega-3 diet and after were as follows: Patient 1 ? Grand mal seizures before were 2-3 per week and after zero. Patient 2 ? Grand mal seizures before were 6-8 per week and after zero. Patient 3 ? Grand mal seizures before were 1-2 per week and after 1 per month. Patient 4 ? Grand mal seizures before were 1-2 per week and after zero. Patient 5 ? Grand mal seizures before were 14 per week and after 3 per week. The authors conclude in their study that, ?All five [epileptic] patients exhibited substantial improvement and alleviation in frequency and strengthof both GM [Grand mal] and PM [Petit mal] seizures. No adverse affects were noticed in any of them. Our study shows that n-3 PUFAs [omega-3 polyunsaturated fatty acids] can alleviate symptoms of human epilepsy.? In another journal, Seizure (2), two authors discussed epilepsy and sudden unexpected death in epilepsy or SUDEP that claims the lives of approximately 500 people each year in the UK. Although epidemiological studies indicatethat 70% to 80% of people who develop epilepsy eventually go into remission there are those that continue to have seizures. The authors note the importance of omega-3 fatty acids in brain health. Keyomega-3 fatty acids that are found in large amounts in fish are eicosapentaeonic acid (EPA) and docosahexaenoic acid (DHA). ?Nutrition is likely to be one of these factors [contributing to seizures] and, in particular, deficiency in omega-3 fatty acids might be an important factor. Nutritional studies suggest that the Western diet is deficient in omega-3 fatty acids, which is an essential nutrient. Hence people with epilepsy in the UK, like those in the general population are likely to be deficient in omega-3 fatty acids. Omega-3 fatty acids have important roles in determining the structural and functional properties of neuronal membranes,affecting membrane functions such as electrical signaling, receptor sensitivity, and neurotransmitter release.? Vitamin E Vitamin E (or & #945;?tocopherol / alpha-tocopherol) prevents the damagingeffects of oxidation in brain tissues. Free radical scavengers, such as vitamin E, have been implicated in prolonged seizure activity. Vitamin E is anatural nutrient that works to stabilize the membranes of cells and has noknown toxic effects. Early animal studies, published in the ls of Internal Medicine (3), found that rats and mice that were exposed to 100% oxygen had seizures. However, the authors found that they could prevent the seizures if they administered vitamin E before the experiment. ? Seizures occurred in 100% of the vitamin E deficient rats and in 50% of those fed a normal diet, but none developed in rats fed a diet containing an & #945;?tocopherol supplement.? In the journal Epilepsia (4), the authors of a study examined the effect ofvitamin E supplementation on 24 patients. The study was a double-blind andplacebo-controlled using 400 IUs of vitamin E for 3 months. At the end of the three months the authors found a dramatic decrease in seizure activity in the patients taking the vitamin E supplement. ?Of the 12 subject receiving active drug [vitamin E], 10 were considered responders (> 60% reduction in seizure frequency), 6 had 90-100% reduction of seizure frequency, and 4 had 60-90% reduction. Two were considered failures (< 60% reduction in seizure frequency). The two failures were clinically identified as noncompliant subjects during the trial period, and so confirmed by Vitamin E assays.? Not only was there a dramatic decrease in seizure activity, there was even improvement in some of the patients? EEG measurements. ?The EEG findings, however, appeared to have improved in > 50% (four of seven patients) of the responders who had EEG performed before and after trial of add-on vitamin E.? After the 3 months, the 12 patients receiving the placebo were placed on the vitamin E supplementation. Those 12 patients also showed dramatic improvements by a ?reduction in seizure frequency between 70 and 100% in all patients.? Also, those patients that continued the vitamin E protocol after the first 3 months continued to show improvement. ?[The] response of six subjects continuing vitamin E after beneficial effects in the first phase [of the study] showed continued improvement.? This study followed an older study published in Canadian Journal of Neurological Sciences (5), where the author examined 100 children that had grand mal seizures versus 100 healthy children. The author found that those with the seizures had a much lower blood level of vitamin E (632 & #956;g/dl [micrograms per deciliter) than those that did not have seizures (822 & #956;g/dl). Here the author concluded that, ?supplements of & #945;?tocopherol might improve seizure control in such patients.? Vitamin B1 Thiamine, also known as vitamin B1, is essential for the functioning of theheart, muscles, and nervous system. A deficiency of thiamine can cause weakness, fatigue, psychosis, and nerve damage. There is no known toxicity associated with thiamine and studies have documented a relationship between thiamine deficiency and epilepsy. At the neurotransmitter level, thiamine deficiency may be accompanied in a lowering in the concentrations of & #947;?aminobutyric acid (gamma aminobutyric acid) or GABA. GABA is a neurotransmitter that is inhibitory, that is, it helps quiet the brain. Low levels of GABA are also associated with epilepsy or seizure disorders. Studies of elderly populations show that 10% are deficient in thiamine, andan even larger amount of 23% of nursing home residents were also deficient. This indicates the relatively high rate of thiamine deficiency occurring especially in the elderly. Thiamine deficiency appears to exist in 25-30% of epileptic patients. A study in the journal of European Neurology (6), examined 50 patients who were diagnosed with a vitamin B1 deficiency. Out of the 50 patients 16 of them had shown epileptic manifestations, where 11 of them had severe vitaminB1 deficiency. They patients were provided with thiamine supplements. In 10 of the patients epileptic seizures were completely ?abolished?. The authors conclude that, ?patients with late-onset epilepsy thiamine deficiency may be considered as one of several possible causes and that a search for thiamine deficiency should not be neglected as it many give a clue towards simple and effective treatment.? Another study in Epilepsy Research (7) involved 72 adult epileptic patientsreceiving a supplement of 50 mg of thiamine and 5 mg of folic acid. The 6 month, double-blind, placebo-controlled study measured the improvement in verbal and non-verbal IQ. At the end of the study the authors found there was an improvement in verbal and non-verbal IQ scores as well as in other neuropsychological functions. The authors conclude that, ?the search for thiamine deficiency should not be neglected in chronic epileptics; empirically? if thiamine assessment is not available ? we suggest 50 mg of thiamine supplementation daily for 1-3 months in chronic epileptics to prevent organic cerebral damage.? Vitamin B6 Vitamin B6, also know as pyridoxine, is needed for protein metabolism, red blood cell metabolism, and proper functioning of the nervous and immune systems. Vitamin B6 is also involved in forming GABA, which mentioned before is a major inhibitory neurotransmitter in the brain. Impaired creation of GABA can lead to seizures. Vitamin B6 deficiency has been known to produce neuritis (nerve inflammation), dermatitis, anemia, and convulsions in infants. A report in the journal Epilepsy Research (8), discusses the case of an 8-day-old boy that had developed seizures. A variety of antiepileptic medications that were tried, such as diazepam and phenobarbital, did not block the seizures. An injection of 80 mg of vitamin B6 did ?abolish the seizure immediately.? In subsequent weeks the child got 40 mg of vitamin B6 daily and ?several EEGs were normal and no further convulsions were observed.? Analysis showed that the boy?s GABA levels were only at 13 pmol/ml (picomoles per milliliter) before the vitamin B6 and after had increased to 124 pmol/ml after vitamin B6 treatment. Children without any neurologic disease have a GABA level at 174 pmol/ml. In the journal Pediatrics (9) several cases of children with seizures are discussed. The first case was of a 4 year old girl that had seizures since she was 2 months old. Despite antiseizure medications she still had daily seizures. She received 50 mg of vitamin B6 twice a day and within 24 hours she was seizure free. After a month her legal guardians stopped the vitamin treatment on their own and her seizures started again within 2 days. After restarting the vitamin B6 she again became seizure free. The second case was of a boy who had been normal until 19 months old when he started having seizures. Despite antiseizure treatment he had between 2 to 6 seizures per day. He was given 100 mg of vitamin B6 intravenously followed by 100 mg of vitamin B6 orally by mouth and the seizures suddenly stopped. ?The pyridoxine was stopped; 1 week later seizures recurred. The EEG showed runs of central spikes and sharp slow waves. Pyridoxine was restarted. A subsequent EEG was normal.? Despite the boy being seizure free for 3months the parents stopped the treatment believing it was ?dangerous?.Within 3 days he started to have 5 to 10 seizures per day. Vitamin B6 was restarted and again the seizures completely stopped. A third case of a 4-month-old boy showed similar results. Despite large amounts of antiseizure medications his seizures continued. He was given 100 mgof vitamin B6 and ?seizures stopped in less than 5 minutes?. Two yearslater he has not had any further seizures and is receiving 50 mg of vitamin B6 twice daily. The authors conclude that, ?the recommendations for pyridoxine treatment should be extended to include all children with seizure disorders with onset at any age who are poorly responsive to medical therapy. The upper limit to the age of onset of pyridoxine-dependent seizures is unknown; no one hasstudied this question.? Selenium Selenium is a structural component of and a co-factor for the antioxidant glutathione peroxidase. Glutathione peroxidase is part of the defense mechanism of the body against oxidation. If there were selenium depletion this would lower glutathione levels, which would cause a higher susceptibility of the delicate fats that are part of cell membranes causing membrane and brain cell damage. The failure of protection against oxidative stress due to selenium depletion increases the oxidative stress on important firing neuronsin the brain. A study in the journal Neuropediatrics (10) discusses the cases of 2 children with severe seizures. The first patient has suffered from seizures from 4 days old until the visit to the study authors? hospital at 5 1/2 months. The second patient had seizures from 11 months until the visit to the hospital at 3 years and 9 months old. The first patient showed an abnormal EEG pattern with ?large slow activities mixed with smaller amplitude polyspikes and marked asymmetry.? The child was started on oral selenium supplements and within two weeks, ?the daily number of seizures was reduced by 75% while the duration of seizures regressed dramatically from more than 30 minutes duration to less than 5 minutes. The focal sharp waves and spike-wave activity on the EEG recordings disappeared.? The authors note that the patient?s condition may have been aggravated by the low selenium content of the infant formula he was using. The second patient had recurrent petite mal seizures that ?recurred and became uncontrollable despite benzodiazepine drips or high doses of dexamethasone.? He was started on an oral supplementation of selenium rich lactobacillus (a probiotic bacteria) referred to as ?Se- Lb?. After two weeks on this supplement his glutathione levels became nearly normal and ?petitmal status and mycolonic seizures together with generalized spike-wave activity in the EEG stopped completely.? After selenium treatment was stopped his glutathione levels dropped and seizures started again. Selenium treatment was restarted which resulted in ?marked clinical improvement with virtually complete cessation of myoclonic seizures and petit mal.? The authors conclude that, ?we think that children with epilepsy who develop intractable seizures should be screened for the possibility of seleniumdeficiency as a trigger of neuronal membrane damage and instability. Inborn errors of selenium uptake or metabolism could be involved in the pathogenesis of intractable epilepsy, Alpers disease (a progressive degenerative disease of the central nervous system that occurs in infants and children) orprogressive neuronal degeneration of childhood.? Carnosine Carnosine ( & #946;-alanyl-L-histidine) is a dipeptide, which is a combination of two amino acids of alanine and histidine. Carnosine is an antioxidant that stabilizes cellular membranes protecting them from damage by free radicals and is found in large amounts in the muscle and brain of mammals. Carnosine also appears to help to modulate zinc and copper into neuronal cells near GABA receptor sites potentially helping with the epileptic inhibition effect of GABA. Carnosine appears to be non-toxic and studies involving carnosine have shown no side effects. A study in the journal Neuroscience (11) examined the effects of carnosine on seizures in rats. In that study the authors found that carnosine decreased seizure duration as well as the amount of time between seizures. ?Carnosine could easily penetrate across the BBB [blood Brain Barrier] and has few side effects. Therefore, it is likely that carnosine might be a new potential anticonvulsant drug for clinical therapy of human complex partial epilepsy in the future.? Past research has shown that there is an association between EEGs and autism. One in three children with autism suffer one or more seizures by adolescence. A double-blind, placebo-controlled study in the Journal of Child Neurology (12) examines the effect of L-carnonsine supplements in children withautism. They studied 31 children with autistic spectrum disorders over 8 weeks using 800 mg daily of L- carnosine. The authors of the study found that, ?the results of this study suggest that supplementation with carnosine can significantly improve receptive speech, socialization, and behavior in children with autistic spectrum disorders.? In addition, ?if, indeed, carnosine acts to affect GABA bioavailabilty, it may likely alter the seizure threshold or GABA function.? Diet During a previous study that analyzed the effect of an oligoantigenic diet to treat migraine and hyperactive behavior in children the authors noted those children with epilepsy often had their seizures stop during the study. An oligoantigenic is a ?few foods? diet in an attempt to eliminate foods that might be causing a reaction in a person. A study based on this observation in Journal of Pediatrics (13) examined the role of diet in 63 children with epilepsy. All the patients were put on a restricted diet for 4 weeks. Normal daily helpings of excluded foods were reintroduced one at a time at the rate of oneper week. If symptoms reoccurred that had disappeared in the initial stages of the diet, then it was eliminated, otherwise it was incorporated back into the diet. Although none of the 18 patients with epilepsy alone improved, 40 of the 45patients with migraine and epilepsy did improve in one or more symptoms. All patients, except for one, reacted to at least two foods. ?During follow-up of 7 months to 3 years on diet, 25 of these patients achieved completecontrol of seizures, four other had seizures only with upper respiratory tract infections, and seven had seizures less than half as frequently as formerly; in all these patients other symptoms also improved. In four other patients, other symptoms improved but seizures did not.? Also, ?19 of the25 patients whose seizures stopped have phased out anticonvulsant therapy,and five are still doing so.? A large number of foods caused reactions in the different patients. The foods that caused the most seizures and symptoms were: cow milk (seizures: 37%, other symptoms: 63%), cow cheese (seizures: 36%, other symptoms: 55%), citrus fruits (seizures: 29%, other symptoms: 50%), wheat (seizures: 29%, other symptoms: 49%), and food additives (seizures: 25%, other symptoms: 58%). In 16 of the patients EEG was repeated at least 1 month after the study started. ?There was no change in five of six patients who previously had hadmultifocal discharges, whereas normalization of the EEG occurred in one. The EEG improved markedly in there of six patients whose previous EEGs had displayed unilateral epileptic activity. The EEG of one of the two with moderate abnormalities became normal.? NutraSweet or Aspartame The artificial sweetener aspartame or NutraSweet was introduced to the market in July 1983 and has become pervasive in the food supply. Although some studies have shown it to be safe, large numbers of adverse reactions are still reported. According to a report in 1984, two-thirds of reactions involve neurologic or behavioral symptoms, particularly headaches. A study in the journal Biological Psychiatry (14) examined the effect of aspartame on 40 patients with unipolar depression along with 40 patients without a psychiatric history. The study was double-blinded and placebo controlled. Patients either received a placebo or aspartame capsules roughly equivalent to 10-12 cans of diet soda. The study was halted early by the Institutional Review Board [iRB] because of the severity of reactions within the group of patients with a history ofdepression. During the study 3 of the patients reported they felt that hadbeen ?poisoned?. One of the three to use the term ?poisoned? experienced ?a conjunctival hemorrhage for the first time in her life during the aspartame week. These events led the Chairman of the IRB to halt the project.? Some of the more severe symptoms noted are as follows: headache (placebo: 63%, aspartame: 88%), nervousness (placebo: 25%, aspartame: 63%), trouble remembering (placebo: 0%, aspartame: 63%), nausea (placebo: 25%, aspartame: 100%), depression (placebo: 38%, aspartame: 75%), insomnia (placebo: 38%, aspartame: 50%), and temper (placebo: 0%, aspartame: 25%). The authors concluded that, ?a significant pattern of reactions to aspartame emerged in patients with a history of major depression. It would appearthat individuals with mood disorders are particularly sensitive to this artificial sweetener; its use in this population should be discouraged.? A study in Environmental Health Perspectives (15) also examined the effectsof aspartame on the brain. The authors note that ?doses of aspartame which are within the range actually consumed by some people can affect the chemical composition of the brain, and may thereby contribute to particular CNS [Central Nervous System] side effects, including headaches, inappropriatebehavior responses, and seizures.? The authors performed a study on rats to determine the effects that aspartame might have on the human brain. They pretreated the animals with various doses of aspartame 1 hour before exposing them to a seizure inducing treatment. At 1000 mg/kg [milligrams per kilogram] 78% of the animals had seizures, at 2000 mg/kg 100% of the animals had seizures. Only 50% of the animals that were pretreated with water had seizures. The authors note that, ?it is possible that doses of the sweetener [aspartame] that cause a sufficient increase in brain phenylalanine might increase seizure frequency among susceptible humans, or might allow seizures to occur in people who are vulnerable but without prior episodes.? Pesticides Pesticides include various agents devised to control a wide number of pests. A 1997 report by the Environmental Protection Agency (EPA) estimates annual usage of 975 million pounds of pesticide active ingredients. Because thecalorie and fluid intake of children are much higher relative to body weight than adults, small amounts of pesticides considered safe for adults could result in unsafe exposures in children. A study in Pediatric Clinics of North America (16) discusses the effects ofvarious pesticides on children. Cholinesterase-inhibiting insecticides arethe most commonly used pesticides. ?Central nervous system toxic signs and symptoms include headache; nausea and vomiting; dizziness; respiratory depression; mental status changes, including coma; and seizures.? Several studies have provided evidence that children display different symptoms than adults. ?In these studies, children were more likely to present with mental status changes, including coma. They were also more likely to present initially with seizures.? Organophosphates produce toxicity by inhibition of the cholinesterase enzyme. The result is an accumulation of the neurotransmitter acetylcholine. This causes a prolonged firing of neurons in the brain. There is a wide range of toxicity for organophosphates and many of the more toxic ones are absorbed right through the skin. ?Organophosphates have been thought for many years to be associated with subtle, long-term neurologic effects years after acute and sub acute exposure. Individual case reports first documented patients with reported headaches, blurred vision, memory, depression, irritability, and problems with concentration.? A case history of a child in the journal Pediatric Emergency Care (17) discusses organophosphates. ?Organophosphate poisoning continues to be a relatively common occurrence, especially in rural areas of the United States. Insecticides fall into four classes: organophosphates, carbamates, organochlorines, and pyrethroids. All compounds can precipitate seizures except for carbamates, which have poor central nervous system (CNS) penetration.? Organically grown foods reduce the amount of pesticides on food and in the environment. A recent study, reported in Medical News Today (18), by researches at Emory University examined the effects of an organic diet on children. ?Immediately after substituting organic food items for the children?s normal diets, the concentration of organophosphorous pesticides found in their bodies decreased substantially to non-detectable levels until the conventional diets were re-introduced.? Wrap Up Omega-3 fatty acids are extremely important in a properly working brain. These omega-3 fatty acids through EPA and DHA supplementation appear to have anti-epileptic effects in animal studies and in a dramatic but small clinical trial. Vitamin E protects the membranes of brain cells dramatically reversing seizures. The B vitamins (B1 and B6) are important in the formation of GABA, a brain ?quieting? neurotransmitter, also with dramatic results. Selenium is important in the formation of glutathione, which also helps protect the brain from oxidation. Carnosine also plays a role in the GABA story. A diet free of certain items (often dairy, wheat, food additives, and citrus) is important in controlling seizures. Aspartame causes neurologic problems in certain individuals and may be a contributing factor in seizures. Pesticides, which are pervasive in our environment and in our bodies, arealso a piece of the puzzle. Other factors, such as lead, mercury from the environment and vaccines, quercetin (a bioflavinoid), vitamin C, and more also play a role in the healthof the human brain and can also have an effect on seizures. These studies mentioned here and many more are all important pieces of the puzzle. Each study was designed and executed by a large number of dedicatedand thoughtful scientists. But what is often lacking is a synthesis of these pieces of information. Combining all the mentioned approaches into a comprehensive protocol: omega-3, vitamin E, vitamin B1, vitamin B6, selenium, carnosine, proper diet, avoidance of aspartame, pesticides, and more could only produce spectacular results. SOURCES: (1) Diet Enriched with Omega-3 Fatty Acids Alleviates Convulsion Symptoms in Epilepsy Patients, Simon Schlanger, Meir Shinitzky, and Yam, Epilepsia, January, 2002, Vol. 43, No. 1, pp. 103-104 (2) Is omega-3 fatty acid deficiency a factor contributing to refractory seizures and SUDEP? A hypothesis. Alan W. C. Yuen and mir W. Sander, Seizure, 2004, Vol. 13, pp. 104-107 (3) High atmosphere pressures; physiological effects increased and decreased pressure; application of these findings to clinical medicine, A.R. Behnke, ls of Internal Medicine, 1940, Vol. 13, pp. 2217-2228 (4) A Randomized, Double-Blind, Placebo-Controlled, Clinical Trial of D-Alpha-Tocopherol Acetate (Vitamin E), as Add-On Therapy, for Epilepsy in Children, A.O. Ogunmekan and P.A. Hwang, Epilepsia, 1989, Vol. 30, No. 1, pp. 84-89 (5) Vitamin E Deficiency and Seizures in Animals and Man, A.O. Ogunmekan, The Canadian Journal of Neurological Sciences, February 1979, Vol. 6, No. 1,pp. 43-45 (6) Epileptic Mainfestations and vitamin B1 Deficiency, A. Keyser, S.F.T.M.De Bruijn, European Neurology, 1991, Vol. 31, pp. 121-125 (7) Thiamine and folate treatment of chronic epileptic patients: a controlled study with the Wechsler IQ scale, M.I Botez, Therese Botez, Andrée Ross-Chouinard, and Lalonde, Epilepsy Research, 1993, Vol. 16, pp. 157-163 (8) Disappearance of neonatal seizures and low CSF GABA levels after treatment with vitamin B6, G. Kurlemann, W. Löscher, H.C. Dominick, and G.D. Palm, Epilepsy Research, 1987, Vol. 1, pp. 152-154 (9) Postneonatal Vitamin B6 Dependent Epilepsy, B. Coker, MD, Pediatrics, August 1992, Vol. 90, No. 2, pp. 221-223 (10) Selenium Deficiency Triggering Intractable Seizures, V. Th. Ramaekers,M. Calomme, D. Vanden Berghe and W. Makropoulos, Neuropediatrics, 1994, Vol. 25, pp. 217-223 (11) Effects of Carnosine on Amygdaloid-Kindled Seizures in Spargue- Dawley Rats, C.L. Jin, L. X. Yang, X. H. Wu, Q. Li, M.P. Ding, Y.Y. Fan, W.P. Zhang, J.H. Luo, and Z. Chen, Neuroscience, 2005, pp. 1-9 (12) Double-Blind, Placebo-Controlled Study of L-Carnosine Supplementation in Children with Autistic Spectrum Disorders, G. Chez MD, Cathleen P. Buchanan PhD, C. Aimonovitch, Marina Becker RN, Karla Schaefer RN, Black RPh, and Komen MA, Journal of Child Neurology, November 2002, Vol. 17, No. 11, pp. 833- 837 (13) Oligoantigenic diet treatment of children with epilepsy and migraine, J. Egger MD, C.M. BA, J.F. Soothill MD FRCP, and J. PhD FRCP,Journal of Pediatrics, January 1989, Vol. 114, No. 1, pp. 51-58 (14) Adverse Reactions to Aspartame: Double-Blind Challenge in Patients from a Vulnerable Population, Ralph G. Walton, Hudak, and Ruth J. Green-Waite, Biological Psychiatry, 1993, Vol. 34, pp. 13- 14 (15) Possible Neurologic Effects of Aspartame, a Widely Used Food Additive, J. Maher and J. Wurtman, Environmental Health Perspectives, 1987, Vol. 75, pp. 53-57 (16) Pesticides in Children, J. Routt Reigart MD and R. MD, MPH, Pediatric Clinics of North America, October 2001, Vol. 48, No. 5, pp. 1-17 (17) Toxic seizures in children: Case scenarios and treatment strategies, MD, a McElroy DO, a L. Liebelt MD, Pediatric Emergency Care, June 2003, Vol. 19, No. 3, pp. 206-210 (18) Organic Diets Lower Children?s Dietary Exposue to Common AgriculturePesticides, Medical News Today, September 30, 2005 http://66.102.7.104/search? q=cache:uqzceEuurj0J:www.vitacost.com/science/hn/Concern/Epilepsy.htm+ seizures+supplements & hl=en & gl=ca & ct=clnk & cd=12 Classifications of seizures: http://www.epilepsy.ca/eng/content/types.html Our 19 year old has a seizure history. 'Partial complex' is the label for what began at age nine after 3 years of bad migraines. The episodes were infrequent at first, 2-3 times per week and progressed to many times daily. Evaluations at a major U and Mayos produced no help-we rejected offers of a temperol lobotomy! She was on tegretol, tegretol sr and depakote. The depakote actually seemed to provoke seizures with episodes occurring 1-1.5 hours after dosing- we dropped that drug after a short time. After reading Seroussi's book in the summer of 2000, I implemented GFCF, cold turkey. The next few days were VERY stressful as she had what appeared to be DT like withdrawal symptoms; 3 days of seizure after seizure, tapering by end of day 3 and gone by day 5. Once we got pure on the diet, we have been able to relate 99.9% of seizures to a dietary infraction. Even her tegretol had a milk coating that would trigger the seizures. They don't appear until about 8-12 hours after eating an offending food. Usually she will wake up with an episode, have several throughout the day(12-18) and taper by bedtime. She has gone from 600-800mg tegretol per day to 100mg at bedtime( mainly for my mental health!) since then. Also in the summer of 2000, she had IgG testing for gluten and casein which showed very elevated levels to both. Neither traditional/non traditional allergy testing nor the Great Plains profile ever showed this. She remains quite sensitive to both gluten and casein. This fall she had a day of seizures in mid Sept and another just one seizure last week- a far cry fron the many daily that we used to see. None of the chelating we have done has been associated with seizures. She does get more irritable sometimes - what I call 'pre-seizure behavior' but we've not seen it progress to seizures with either DMSA, ALA or td-DMPS. Her liver function studies have also remained normal with all this. Thyroid function still stinks though. Improvements that have come about include a gradual awakening of what you and I think of as normal sensory function-hands and feet are no longer 'asleep', bluish in color or stone cold. Cuts and scrapes get attention now. She'll wear hats, coats and mittens in the winter without protest. She's reading the paper and talking about the school sports teams-generally much more interested in the world about her. Pupils are beginning to respond normally to light. One thing that we have seen for a long time now is urinary urgency and frequency that begins about 24 hours into a round and subsides within a day after the round is over. I hope this means that her pituitary is getting cleared. We did a few rounds of the td-DMPS late this summer and early fall. We were unable to work up to more that 6-8 gtts per day without seeing a nasty, right sided skin rash. The rash did respond to an otc yeast cream but was quite severe and has left scars. We've gone back to DMSA/ALA on a 3/4 cycle. In reading the Minimata long term follow ups, it seems that our childrens' symtoms of poisoning will only worsen with time unless we do the positive interventions NOW that can clear some of the toxins. For me, that would mean that I would live with some extra seizures now to clear her system as best that I can. We lost our neurologist of 9 years because he did not 'like' the idea of chelation. He was convinced that there were no symptoms of mercury poisoning-even though our child had approx 85% of the symptom's outlined on the 2 page synopsis of the paper by Redwood et al. He refused to run any of the tests that Andy suggests to comfirm. He would not even do a thyroid profile on a child who could not stay awake during a normal day. I did/do have the support of an internist who usually run the tests I request. I also use Direct lab Services for those he won't authorize, if I feel a need for verification. I would urge you to look upon these folks with the credentials as 'consultants' who can help you along the way, if they/you choose. You don't have to divulge all of your choices for your child to them. The seizure history has allowed us to keep track of liver function, electrolytes, CBC, all with the 'blessings of mainstream' with no mention that our primary concern involves chelation. Once I found the mercury connection, I knew the problem. It was intimidating to begin chelation without any support but the benfits for our daughter have been worth it. Thankfully, you both have much time on your sides that we did not. Your children are young! and need your help!! Yes mercury poisoning can cause seizures. One thing mercury can do is drop the level of the amino acid taurine which can then cause seizures in some kids. We have been supplementing taurine with my son (after proper testing, of course) and he no longer shows signs of any seizures. Our 19 year old is prone to seizures. A few days of inositol or any kind of choline(phos, bitart, chlor) will result in seizures for her. In retrospect, I did not recognize the seizures when they began. We saw a pattern of a slight cough with a little blink that occurred for several months before the first truly recognizable event. It took a seizure at school for anyone in the medical community to take us seriously. GFCF has offered remarkable seizure control for her. Her diet in low carb(SCD ideas have helped), VERY low grain, high fat and protein. As Andy says, stay away from hydrogenated anything. Peanut and chocolate(probably the milk) also produce a very irritable person-I term it 'pre-seizure' behavior. She also does not tolerate any combination vitamin. > > Hi everyone, > > My almost 6-year-old son has now been taking Houston enzymes - AFP > Peptizide and Zyme Prime - for approximately three weeks. He has > done incredibly well - his stools now look entirely normal, formed, > not floating, etc. For a week and a half he has eaten all his food > entirely by mouth - prior to enzymes he was still 100% tube fed with > very limited interest in or willingness to try oral eating. His > tummy is no longer bloated after meals. > > On Thursday he had a major seizure - the first one of his life. He > had an EEG Friday morning that was very abnormal. I am not > suggesting that the enzymes caused the seizure, as he has a very > complex medical history. I am just wondering if anyone else has > experienced this - if there could be any connection at all since the > change in his digestion is so apparent? He has actually gained about > 2 1/2 pounds since we started the enzymes so he clearly is absorbing > the food much better. > > Again, not blaming or stopping the enzymes at this point - he is at > higher risk of seizures due to his extreme prematurity and also I > know seizures are common in children with autism - just wondering > what other experiences have been in this area. > > Thanks so much. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2007 Report Share Posted May 11, 2007 I read the post with the vitamins that are beneficial and found it facinating. Two years my son's carnosine levels are almost undetectable. I found this paragraph confusing (tired Mommy brain, sorry): Other factors, such as lead, mercury from the environment and vaccines, quercetin (a bioflavinoid) , vitamin C, and more also play a role in the healthof the human brain and can also have an effect on seizures. Does it mean quercetin is NOT helpful? I was told it is a good anti- inflammatory. Thanks, > > Below is a bunch of cut and paste information on seizures. I'm > pretty sure I got most of it from autism treatment using ONIBASU to > search for it. I hope it makes sense and might be of some help. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2007 Report Share Posted May 11, 2007 > > Other factors, such as lead, mercury from the environment and > vaccines, quercetin (a bioflavinoid) , vitamin C, and more also play > a role in the healthof the human brain and can also have an effect on > seizures. > > > Does it mean quercetin is NOT helpful? I was told it is a good anti- > inflammatory. > > Thanks, , I think it means that it is helpful. Badly written sentence though, lumping it in with lead, mercury, and vaccines! I've looked at a rat study that showed that quercetin helped prevent seizures in ethanol withdrawl. Quercetin also does good stuff for the damaged gut. It's role in brain health, as mentioned above, could also play a role in reducing seizures. Anita > > > > > > > Below is a bunch of cut and paste information on seizures. I'm > > pretty sure I got most of it from autism treatment using ONIBASU to > > search for it. I hope it makes sense and might be of some help. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 My son is 6 yrs old, non verbal w/ autism. We was originally diagnosed w/ PDD and later with classic autism. We did an MRI 3 yrs ago and it came back normal. We later did a 24 hr eeg at home where he wore a fanny back around him with the monitor and found that he is having absent seizures. The left side of his brain by the frontal lobe is having abnormal activity. We had no idea. We were against meds until we had justification to use them for our son. The last two years he has been on meds that have controlled his " absent "  or " starring " seizures. We confirmed that he needed the meds when we took him off the med (do to side effects) and detoxed him prior to placing him on another. During the time he was off of meds, he regressed and lost all his ability to communicate thru signs and sounds, not to mention he lost his connection to us and all his surroundings. All his hard work in therapy just went down the drain and we had to start all over. This was the worse time of our lives. Last Oct. we did another 24 hr eeg at the hospital and his seizures are now controlled. He is progressing, Thank God. If your nephew does not get treatment, it will continue to hurt him. Look for the best neurologist out there. He deserves nothing less. God bless. Re: seizures? Here's another thought..does your sister have a camcorder? It would be a good idea if they could capture one of his " seizure episodes " if possible,that way the ped neuro can have a better understanding of what is happening.Maybe keep a journal of what was happening right before and after ..does he get sleepy after a seizure..that sort of thing. It's so hard to watch them go through that ..especially when they're so little.. Prayers to you & family Stacey > > My nephew is 3and 1/2 and has been diagnosed as pdd today sis was at > hospital because he is having seizures we are all so scared he goes > limp his eyes roll into the back of his head his breathing is shallow > and he is non responsive today his seizure lasted 10 minutes cat scan > and blood work are all fine and now she has to schedual an eeg at the > hospital they told her that there is nothing we can do for him and they > gave her a sheet on different types os seizures after reading this > paper she said she believes he is having more than one kind of seizure > I dont remeber the names for all but there is the one described above > and a temperal lobe she says she thinks he is having these due to > violent uncontrolable outbursts that end suddenly and he does not seem > to remember acting that way also sometimes he goes into a stare and is > not responsive We all just want to know has anyone else had this happen > how do we handle it Is it true that there is nothing we can do but sit > and wait for the seizure to end and the biggest question is how > dangerous is this for him sis is scared to sleep worried he will stop > breathing we would be greatful for any info any one may have Thanks > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2008 Report Share Posted June 26, 2008 My daughter is on Keppra and has been on it scince January of 08 but it took alot of fighting with the doctors to do it. He was refusing due to the fact she had a normal eeg and ct but i was not going to let him bully me and not do anything. we do have an appt with the doctors at the Blue Bird Clinic at TCH in August but our pysch says that they are not real aggressive when it come sto treating this but she has done some what better but she is still having partial tonic clonic and absent seizures. The abset=nt are 3-10 on some days and only 1-4 others. But the school does not do anything and can not figure out why there is a problem with reading and writing.  Good Luck Stacie in Magnolia Subject: Re: Re: seizures? To: Texas-Autism-Advocacy Date: Friday, June 20, 2008, 11:14 AM My son is 6 yrs old, non verbal w/ autism. We was originally diagnosed w/ PDD and later with classic autism. We did an MRI 3 yrs ago and it came back normal. We later did a 24 hr eeg at home where he wore a fanny back around him with the monitor and found that he is having absent seizures. The left side of his brain by the frontal lobe is having abnormal activity. We had no idea. We were against meds until we had justification to use them for our son. The last two years he has been on meds that have controlled his " absent "  or " starring " seizures. We confirmed that he needed the meds when we took him off the med (do to side effects) and detoxed him prior to placing him on another. During the time he was off of meds, he regressed and lost all his ability to communicate thru signs and sounds, not to mention he lost his connection to us and all his surroundings. All his hard work in therapy just went down the drain and we had to start all over. This was the worse time of our lives. Last Oct. we did another 24 hr eeg at the hospital and his seizures are now controlled. He is progressing, Thank God. If your nephew does not get treatment, it will continue to hurt him. Look for the best neurologist out there. He deserves nothing less. God bless. [Texas-Autism- Advocacy] Re: seizures? Here's another thought..does your sister have a camcorder? It would be a good idea if they could capture one of his " seizure episodes " if possible,that way the ped neuro can have a better understanding of what is happening.Maybe keep a journal of what was happening right before and after ..does he get sleepy after a seizure..that sort of thing. It's so hard to watch them go through that ..especially when they're so little.. Prayers to you & family Stacey > > My nephew is 3and 1/2 and has been diagnosed as pdd today sis was at > hospital because he is having seizures we are all so scared he goes > limp his eyes roll into the back of his head his breathing is shallow > and he is non responsive today his seizure lasted 10 minutes cat scan > and blood work are all fine and now she has to schedual an eeg at the > hospital they told her that there is nothing we can do for him and they > gave her a sheet on different types os seizures after reading this > paper she said she believes he is having more than one kind of seizure > I dont remeber the names for all but there is the one described above > and a temperal lobe she says she thinks he is having these due to > violent uncontrolable outbursts that end suddenly and he does not seem > to remember acting that way also sometimes he goes into a stare and is > not responsive We all just want to know has anyone else had this happen > how do we handle it Is it true that there is nothing we can do but sit > and wait for the seizure to end and the biggest question is how > dangerous is this for him sis is scared to sleep worried he will stop > breathing we would be greatful for any info any one may have Thanks > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2008 Report Share Posted June 26, 2008 how long was the eeg my sis just did one for 48 hours with my nephew and it was normal she is very upset because she does not know now what to do or if this is or isnt a seizure from everthing the doc gave her and from how he acted limp barely breathing non responsive eyes rolled up in his head it seems to be a seizure it lasted for 5 min the first time and ten the next they said they are going to do more tests but they told her that they do not believe he has a seizure disorder is it common for eegs to be normal even when a child is having seizures thanks for your response, jennifer From: Andja Bozic <bozicandjayahoo (DOT) com> Subject: Re: [Texas-Autism- Advocacy] Re: seizures? To: Texas-Autism- Advocacy@ yahoogroups. com Date: Friday, June 20, 2008, 11:14 AM My son is 6 yrs old, non verbal w/ autism. We was originally diagnosed w/ PDD and later with classic autism. We did an MRI 3 yrs ago and it came back normal. We later did a 24 hr eeg at home where he wore a fanny back around him with the monitor and found that he is having absent seizures. The left side of his brain by the frontal lobe is having abnormal activity. We had no idea. We were against meds until we had justification to use them for our son. The last two years he has been on meds that have controlled his " absent "  or " starring " seizures. We confirmed that he needed the meds when we took him off the med (do to side effects) and detoxed him prior to placing him on another. During the time he was off of meds, he regressed and lost all his ability to communicate thru signs and sounds, not to mention he lost his connection to us and all his surroundings. All his hard work in therapy just went down the drain and we had to start all over. This was the worse time of our lives. Last Oct. we did another 24 hr eeg at the hospital and his seizures are now controlled. He is progressing, Thank God. If your nephew does not get treatment, it will continue to hurt him. Look for the best neurologist out there. He deserves nothing less. God bless. [Texas-Autism- Advocacy] Re: seizures? Here's another thought..does your sister have a camcorder? It would be a good idea if they could capture one of his " seizure episodes " if possible,that way the ped neuro can have a better understanding of what is happening.Maybe keep a journal of what was happening right before and after ..does he get sleepy after a seizure..that sort of thing. It's so hard to watch them go through that ..especially when they're so little.. Prayers to you & family Stacey > > My nephew is 3and 1/2 and has been diagnosed as pdd today sis was at > hospital because he is having seizures we are all so scared he goes > limp his eyes roll into the back of his head his breathing is shallow > and he is non responsive today his seizure lasted 10 minutes cat scan > and blood work are all fine and now she has to schedual an eeg at the > hospital they told her that there is nothing we can do for him and they > gave her a sheet on different types os seizures after reading this > paper she said she believes he is having more than one kind of seizure > I dont remeber the names for all but there is the one described above > and a temperal lobe she says she thinks he is having these due to > violent uncontrolable outbursts that end suddenly and he does not seem > to remember acting that way also sometimes he goes into a stare and is > not responsive We all just want to know has anyone else had this happen > how do we handle it Is it true that there is nothing we can do but sit > and wait for the seizure to end and the biggest question is how > dangerous is this for him sis is scared to sleep worried he will stop > breathing we would be greatful for any info any one may have Thanks > > Quote Link to comment Share on other sites More sharing options...
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