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  #1  
Old 06-21-2008, 07:06 PM
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my son has 'episodes'


I'm new to this site, so I figured that I would share my story with everyone.
My story started when my first son, Caleb, was born on May 14, 2004. He was fine at birth, other than colic, he was fine until he was around 3-4 months old. Then, one day while I was feeding him & he was falling asleep- his upper torso, arms, neck and head began shaking. It lasted about 45-60 seconds, stopped for like 30 seconds and then began again. I brought him right into the pediatrician. I was so scared. We ruled out a fever. We were not sure what to do. He had a thirty minute EEG done, it came out normal. That was the only test that was done. At the time he was also having GI problems (bright blue-green, VERY stinky, watery poop- about 12 times a day from the time he was born), which the doctors thought were more important because of the normal EEG. It turned out that by the time he was 15 months, they went from happening up to 12 times a day- to happening maybe once a week. The last time he had one was around the age of 2. He is now a little over four years old.
I thought that would be the end, but on 1/9/08 a had another little boy, DeWayne aka "De". His is a very healthy baby. No colic. Nurses like a champ. No colds. Never had a fever. The only thing that he ever had was a clogged tear-duct (which fixed itself). Then on May 29th... it happened. It was the same as Caleb use to have. But this time when I went to the doctor- they refered me to a pediatric neurologist. He saw her on May 30th, and June 3rd he had a thirty minute EEG (normal). On July 1st, he will be admitted to the hospital for a 24+ hour EEG. The only test done on him so far is the first EEG. But the doctors seem to be more worried this time. They even said that Caleb is lucky that he did not suffer long term effects from his seizures.
This is what happens during his 'episodes'
-happens after nursing, before falling asleep
-falls into a deep sleep after
-breathes through the whole thing
-upper body, arms, neck & head shake
-unresponsive during
-lasts anywhere from 30-90 seconds
I am just worried about him. I am also worried about Caleb. I do not want this to turn out to be something that could effect them later in life. I want them to be ok. I love my boys (I also love my girls, I have a set of twins that were born on 12/9/02- no seizure activity ever). If anyone wants to chat, give me advise, share their own experiences... I'm open & willing.
Thanks for listening to my family's story!
-Amber
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Old 06-21-2008, 10:08 PM
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Hi Amber, welcome to the forum.

I'd recommend you check out this thread if you are new to the world of epilepsy: epilepsy 101
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New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads.

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Old 06-21-2008, 11:55 PM
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Hi Amber - Did you have your sons vaccinated, and if so how was their reaction?
There is a connection between GI issues, seizures and vaccinations. Mostly in the Autistic community, but it all is interrelated. One can have many of the same symptoms and not have the outward classic autistic symptoms until later. It also is more prominant in boys.

A gluten free, casein free diet is something that you can try immediately.
Check out GFCFkids@yahoo.com for some added support.
You should also check out:
www.stankurtz.com for additional ideas on this subject.
He also has a group list:
mb12valtrex@yahoo.com
and
www.danasview.net
is also helpful

.... as of course all of our threads here.

It is the theory that the body is not able to handle the viral load, mercury and other metals are added to the vaccines, which also breaks down the immunity, and can cause neurologist issues. Then the intestines are damaged by fungal and bacterial overgrowth.

There are many that have recovered their children.
Good luck ... and BTW Welcome to CWE.
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  #4  
Old 06-22-2008, 06:27 AM
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Thank you for your advise! Caleb has tried every diet imaginable. He even had biopsies of his GI tract, and a colon oscopy done. The biopsies ruled out celiac. Some of Caleb's GI problems have gotten better, now that he is four. His poop is longer like water & super stinky... but it is still a blue-green color.
In your experiences, besides EEG- what were tests that helped to figure out your epilepsy? I don't feel like they are doing much for De, my five month old.
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Old 06-22-2008, 09:45 AM
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One must understand that Epilepsy is only a label. It only tells you that Caleb and De have had two or more seizures.
You have to figure out why they are having seizures.
I would bet Caleb has to do with his GI issues. What diets have you tried?
Have you had him tested for food intolerances? IGG ?

Were they vaccinated on schedule?
You might look into a heavy metals test. I believe it is called a Hair Elements test.
Many doctors won't know how to read this, so you will have to be their advocate and keep searching for those that can help.

The sites I listed have a lot of great info about intestinal issues, mitochrondrial dysfunction etc.

Or here:
http://www.coping-with-epilepsy.com/...seizures-2607/
http://www.coping-with-epilepsy.com/...n-toxins-3252/
http://www.coping-with-epilepsy.com/...seizures-2849/
http://www.coping-with-epilepsy.com/...imonials-1317/
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Last edited by RobinN; 06-22-2008 at 09:54 AM.
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Old 06-22-2008, 03:07 PM
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For Caleb we tried celiac diets, lactose-free diets, combo of celiac & lactose-free diet, kept diaries of everything that he ate and took the foods that he would normally eat away... every diet that he could have been on- he was on. But Caleb has not had a seizure in over 2 years. It's his younger brother, De, who is having them. And De is not having any GI problems. They both tolerated their vaccinations very well. No problems have, not even high fevers.
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Old 06-22-2008, 03:49 PM
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Originally Posted by lahacade View Post:
I'm new to this site, so I figured that I would share my story with everyone.
My story started when my first son, Caleb, was born on May 14, 2004. He was fine at birth, other than colic, he was fine until he was around 3-4 months old. Then, one day while I was feeding him & he was falling asleep- his upper torso, arms, neck and head began shaking. It lasted about 45-60 seconds, stopped for like 30 seconds and then began again. I brought him right into the pediatrician. I was so scared. We ruled out a fever. We were not sure what to do. He had a thirty minute EEG done, it came out normal. That was the only test that was done. At the time he was also having GI problems (bright blue-green, VERY stinky, watery poop- about 12 times a day from the time he was born), which the doctors thought were more important because of the normal EEG. It turned out that by the time he was 15 months, they went from happening up to 12 times a day- to happening maybe once a week. The last time he had one was around the age of 2. He is now a little over four years old.
I thought that would be the end, but on 1/9/08 a had another little boy, DeWayne aka "De". His is a very healthy baby. No colic. Nurses like a champ. No colds. Never had a fever. The only thing that he ever had was a clogged tear-duct (which fixed itself). Then on May 29th... it happened. It was the same as Caleb use to have. But this time when I went to the doctor- they refered me to a pediatric neurologist. He saw her on May 30th, and June 3rd he had a thirty minute EEG (normal). On July 1st, he will be admitted to the hospital for a 24+ hour EEG. The only test done on him so far is the first EEG. But the doctors seem to be more worried this time. They even said that Caleb is lucky that he did not suffer long term effects from his seizures.
This is what happens during his 'episodes'
-happens after nursing, before falling asleep
-falls into a deep sleep after
-breathes through the whole thing
-upper body, arms, neck & head shake
-unresponsive during
-lasts anywhere from 30-90 seconds
I am just worried about him. I am also worried about Caleb. I do not want this to turn out to be something that could effect them later in life. I want them to be ok. I love my boys (I also love my girls, I have a set of twins that were born on 12/9/02- no seizure activity ever). If anyone wants to chat, give me advise, share their own experiences... I'm open & willing.
Thanks for listening to my family's story!
-Amber
Hey Amber sorry you been having a rough time.

Now to lighten the mood maybe. Are these episodes MASH or Key stone cops. Episodes are too mild a word for what typically happens during a seizure. It's more apt to say it's like a really violent storm. The only way you can handle this is to admit that you are angry with the specialists for not checking him sooner. Just go on get good and mad. if you are terrified then say so, if you are sad then say so. Come on it's all rather confusing especially for a panicked parent. I mean they should call them seizures and have given you an education on them and how to cope with them so you are better prepared to handle raising a kid with epilepsy but if they did that then we'd have to find something better to do most likely.
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Old 06-22-2008, 04:04 PM
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I just HATE the doctors that I am dealing with. They never went any farther than doing a 30 minute EEG on Caleb (luckily his seizures stopped by the age of 2), but now De is having them. The doctors say that they are just episodes because the 30 minute EEG showed nothing. But I am pushing them to figured out what is wrong with De because it's likely that Caleb had the same thing that De has now. So I want them to make sure that both of my boys will be ok. I just don't understand why they aren't doing blood work to rule out metabolic abnormalities that can cause seizures. I mean, my husband is a type 1 diabetic and it runs in his family. Maybe my boys have early diabetes and their blood sugar is getting messed up??? And we only know 1/2 of our family history: my mother's family and my husband's family (let's hear it for dead beat dads!!!). I am just really pissed of and really scared. I am confused. I am terrified. I don't want to admit it though, because I can't afford to fall apart. Does anyone know of any good pediatric neurologists in new york state? I live in upstate NY... north of Saratoga. The closest neurologist is in Albany. But lets just say that I am looking for another. My son's insurance only covers in New York State.
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Old 06-22-2008, 06:31 PM
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I am going to share a few things that I have going with my kids, to show you that something is going on in their little bodies.

My oldest son was diagnosed at 16 with Asperger Syndrome. He is very high functioning and I can't place a time and date on changes in his behavior, but he did have all vaccines with thimerisol and now has an inflamed instestinal tract at the age of 23 (ongoing since around 20).

My second son has vitiligo which is an auto immune dysfunction. Most likely in my mind caused by vaccinations and the inability of his body to handle the onslaught. No other symptoms.

My third at the age of 18 mo stopped trying to speak. Regressed again at the age of 5 after boosters. Had to be held back in first grade. At the age of 14 began having seizures. Hormonal triggers, additives in foods, and heavy metals in her system (most likely from vaccinations and environmental causes)

I think you have to look at the whole picture. Some of these kids don't have fevers, and the seizures can even begin months to years after the onslaught of virus overload. Certainly is like figuring out a puzzle at times.

I have also learned that insurance won't many times cover what we are asking them to cover, unless you can make a good case for them to do so. It is worth however the search for doctors that support your decisions. I hope you find some suggestions here.
If you want the blood work done.. .why not ask for it? Keep focused on what you need to do to find a good doctor, and support. It is okay to be confused and scared, but come here and write what you are confused about, and get comfort when you are scared. Help those little ones feel safe when you return to care for them.

Perhaps you already have the glucose tester and can take a reading throughout the day.
I was thinking about buying one, as I think this might be a trigger for my daughter too.
Can't hurt...

Sorry this post is not very well thought out.

Have you ever looked at this diet?:
http://www.breakingtheviciouscycle.i...llegal_a-c.htm
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Last edited by RobinN; 06-22-2008 at 06:44 PM.
  #10  
Old 06-23-2008, 12:38 AM
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Originally Posted by lahacade View Post:
I just HATE the doctors that I am dealing with. They never went any farther than doing a 30 minute EEG on Caleb (luckily his seizures stopped by the age of 2), but now De is having them. The doctors say that they are just episodes because the 30 minute EEG showed nothing. But I am pushing them to figured out what is wrong with De because it's likely that Caleb had the same thing that De has now. So I want them to make sure that both of my boys will be ok. I just don't understand why they aren't doing blood work to rule out metabolic abnormalities that can cause seizures. I mean, my husband is a type 1 diabetic and it runs in his family. Maybe my boys have early diabetes and their blood sugar is getting messed up??? And we only know 1/2 of our family history: my mother's family and my husband's family (let's hear it for dead beat dads!!!). I am just really pissed of and really scared. I am confused. I am terrified. I don't want to admit it though, because I can't afford to fall apart. Does anyone know of any good pediatric neurologists in new york state? I live in upstate NY... north of Saratoga. The closest neurologist is in Albany. But lets just say that I am looking for another. My son's insurance only covers in New York State.
I'm sorry I don't know anyone in New York State. I've only been to NYC three times and hated it all three times. Try the city they'll do the blood work in self-defense to get it out of the way. Or go to a very large hospital and tell them you think your son's might have diabetes and would like to have both of them tested. I had to ditch my pediatrician as a kid because she didn't care about anyone except herself and was a lousy doctor. Your husband being a type I diabetic has a glucose meter. And probably knows how to get one just get him to say he broke his and needs another one and using the extra glucose meter check the levels on both after they have eaten, keeping records and then check the results against the base line after about two weeks and use it to either sue them for malpractice or give it to the media tell the story about how they treated your kids badly and almost got both of them killed.

Just call a news station and tell them the deal and that your insurance sucks the whole thing about what you went through with both sons I'm telling you the media will love it they might get a prize out of it and higher ratings most likely. You can also report them to the AMA. Not running blood tests on kids who might have a metabolic disorder is negligence and I think the AMA will have something to say about that. Talk to the press and tell them everything you know and that you think the doctors you have to deal with don't care about your kids. While you are holding the baby and your husband is holding the hand of the other one. People love babies and like kids and will want to help you and your family. Once that airs then people will try to help you. It works out for both you and the press and the only ones who will lose are the doctors who treated both of your kids badly and disrespected you. That a woman would stand up for their little ones will inspire others to do the same and we might be able to win the fight for our kids then. They're my kids too. All of the disabled are my kids too since I'm incapable of reproducing you can fight them but you are going to need help. I'll fight for them always because I know if I don't stand up for what is right then on one else will.

I'm glad I met you because it gives me a chance to make a difference in the lives of others. I lost track of how many lives I saved but I know for certain 6 people wouldn't still be around if I hadn't done what I did to help them. Probably rescued more than that but I stopped keeping score a long time ago. It only takes one heart to change everything. Courage in the face of fear. Integrity in the face of self serving lies manufactured out of convinience. Honor in the face of betrayal. Compassion and mercy in the face of brutality and cruelty. That is what I believe in also that true love lasts forever and hope is more real than anything in this world. I'll pray you find the strength to fight for your kids and the hope to get through the night and I'll ask the folks upstairs to send you Raphael the Angel of healing. Also pray that you get some sleep to face what it is ahead of you which is not going to be easy for anyone.

You sound like a great mom and I believe in you so it's time you learned to believe in yourself one hundred percent win or lose I believe in you no matter what happens. Yet that doesn't matter unless you believe in yourself. They are your kids and mine too because they are in pain so I feel like if I can help then maybe I can be a part of the solution rather than part of the problem. I want to create a better world for them to live in just like you do. I belong to Thadeus Jude. Epilepsy is no cause for despair. You have to stay strong and fight for your family no matter what the consequences are. You think it is easy for me to say that courage is easy for those who haven't faced their own death I have multiple times and I've been scared that I might not make it through the night. I asked Jude to go to your house and help you. Also prayed for you and your family. Sometimes all we can do is pray for the endurance to withstand what we have to even if their are no answers we have to believe inspite of everything and hang on even when everything in us wants to die it is easy to say but it isn't so easy to know inside of you. I suspect you understand that better than I do and have more strength than you know.

I'm proud to be here with you and proud you would care about your children so much it hurts you inside. I do not claim to be anything special I'm just disgusted with slack doctors and like the disabled because they saved my life and I owe them. So I owe you.
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Old 06-23-2008, 10:16 PM
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Quote :
The association of abdominal symptoms with epilepsy has been recognized for many years. For example, "gastric and intestinal disturbances" were viewed as primary etiological factors by medical doctors during the late 19th and early twentieth century (Dercum, 1912, p. 917). Osteopaths noted that, ".in cases where the exciting factor seems to be in the intestine and there is reverse peristalsis of the intestines, causing a reversion of the nerve current in the vagi, thorough rapid abdominal treatment will normalize peristalsis and aid in preventing an impending attack" (Hazzard, 1905, p. 275). Edgar Cayce insisted that idiopathic epilepsy is produced by lacteal duct adhesions along the right side of the abdomen that produce nerve reflexes to the brain. "From every condition that is of true [idiopathic] epileptic nature there will be found a cold spot or area between the lacteal duct and the caecum" (Cayce, 1934). The invention and clinical application of the electroencephalogram (EEG) during the 1920's shifted the focus of medical attention from the abdomen to the brain where, for the most part, it has remained to this day.

Another example of the abdominal connection in epilepsy is the aura which is common in certain types of epilepsy. For example, temporal lobe epileptic seizures frequently begin with an aura. In neurological terms, an aura is actually a mild seizure which precedes the primary seizure. It can be thought of as a warning that a seizure is about to happen. Most often, auras manifest as an altered consciousness or peculiar sensation. "The most common aura is of vague gastric distress, ascending up into the chest" (Gordon, 1942, p. 610).

Modern medical science has rediscovered the abdominal connection in epilepsy. A few papers published in the medical journals during the 1960s called attention to the abdominal features in epilepsy (Berdichevskii, 1965; Takei and Nakajima, 1967; Juillard, 1967). Over the past twenty-five years, numerous researchers and clinicians have reported on various aspects of abdominal epilepsy (Agrawal et al., 1989; Babb and Eckman, 1972; Bondarenko et al., 1986; Douglas and White, 1971; Hotta and Fujimoto, 1973; Loar, 1979; Matsuo, 1984; Mitchell et al., 1983; Moore, 1972; O'Donohoe, 1971; Peppercorn et al., 1978; Peppercorn and Herzog, 1989; Reimann, 1973; Singhi and Kaur, 1988; Solana de Lope et al., 1994; Yingkun, 1980; Zarling, 1984).

Common clinical features of abdominal epilepsy include abdominal pain, nausea, bloating, and diarrhea with nervous system manifestations such as headache, confusion, and syncope (Peppercorn and Herzog, 1989). "Although its abdominal symptoms may be similar to those of the irritable bowel syndrome, it may be distinguished from the latter condition by the presence of altered consciousness during some of the attacks, a tendency toward tiredness after an attack, and by an abnormal EEG." (Zarling, 1984, p.687). Mitchell et al., (1983) regard cyclic vomiting as a primary symptom of abdominal epilepsy manifesting as simple partial seizures. Although abdominal epilepsy is diagnosed most often in children, the research of Peppercorn and Herzog (1989) suggests that abdominal epilepsy may be much more common in adults than is generally recognized.

One of the primary problems in understanding abdominal epilepsy is clearly defining the relationship of the abdominal symptoms to the seizure activity in the brain. In other words, what is the pathophysiology of abdominal epilepsy? Is the essential pathology in certain areas of the brain which happen to be connected to the abdominal organs? Or, is the primary pathology in the abdomen, which is conveyed through connecting nerve fibers to the brain, resulting in epileptic seizures? Peppercorn and Herzog noted both possibilities in their attempt to understand the cause of abdominal epilepsy:


* "The pathophysiology of abdominal epilepsy remains unclear. Temporal lobe seizure activity usually arises in or involves the amygdala. It is not surprising, therefore, that patients who have seizures involving the temporal lobe have GI symptoms, since discharges arising in the amygdala can be transmitted to the gut via dense direct projections to the dorsal motor nucleus of the vagus. In addition, sympathetic pathways from the amygdala to the GI tract can be activated via the hypothalamus. On the other hand, it is not clear that the initial disturbance in abdominal epilepsy arises in the brain. There are direct sensory pathways from the bowel via the vagus nerve to the solitary nucleus of the medulla which is heavily connected to the amygdala. These can be activated during intestinal contractions" (Peppercorn & Herzog, 1989, p. 1296).
Quote :
The possibility that neurological syndromes such as epilepsy, migraine and autism may be caused by pathology in the gastrointestinal system raises some intriguing questions with regard to clinical practice and basic research. What is the nature of the pathology? Can it be measured? If pathology is shown (or assumed) to exist, what type of treatment regimen is most effective? Is there any evidence to support therapies which focus on abdominal pathology? Can these illnesses be cured?
http://www.meridianinstitute.com/ceu/ceu12abd.html
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  #12  
Old 06-24-2008, 07:33 AM
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Welcome lahacade



I hope you continue to fight for your boys. Keep researching and write down specific questions for their doctors. If they refuse to respond to your questions, find new doctors. However, having them written down logically usually helps to get them to respond. Plus you don't risk forgetting to ask something.

You could even send them to the doctor a week before your appointment to give him a chance to review them.

Let us know how the 24 hour test turns out. It is not unusual for the 30 minute tests to be normal.

Again, Welcome to CWE

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