Hi everyone! My son has not actually been diagnosted with epilepsy but as I understand the definition it is any one having had more that one seizure. I was just wondering if there are any other parents out there who have been through this or are going through it currently. My son, cadin, is 2 months old and he has been having seizures since he was 2 days old. Our nuerologist has told us that these are not infantile spasms. He has had 4 ct scans, mri, mra, spinal tap 5 or 6 eegs and still no diagnosis. We are taking him for a video eeg and a p.E.T. Scan next week. He is currently taking phenobarbital, dilantin and topamax. After adding the topamax his seizures have finally come under control. He only has 2 or 3 a day now, lasting just a few seconds. Without meds he has seizures every ten minutes lasting between 1 and 2 minutes. These seem to be partial simple seizures, I think. He has no loss of consciousness(spelling?) and they always start in his left arm and sometimes they spread to his right arm. Other than these seizures he is a perfectly healthy baby. Sorry I rambled on and on, but so far I can find nothing written anywhere that sound like this. If anyone out there can give me some insight, that would be great. Thanks.

Virginia
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replied September 16th, 2003
Sooooooooo-how Are You
Sounds like my son but his first one was at almost 20 months. He is on only phenabarb currently & I think we might have it under control at a therapeutic level of 38...
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replied September 17th, 2003
Infant Seizures
Dear virginia,
when my second son was born, he had "tremors" that looked like seizures. My doctor took some blood and found out that it was calcium deficiency (this was in 1972, long before extra calcium was routinely recommended in pregnancy). We had liquid drops to put in his formula, and by the second week, there were no more tremors/seizures. This is just a thought, because the medication you describe him taking is a lot of different neurological "depressants" (for lack of better word).
Best wishes, prayers and love electronically sent your way,
anne
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replied January 28th, 2008
I can absolutly relate. My son began having siezures as 4 months (he is now 5 1/2 months) and he also has developmental delays. He is not playing with toys, smiling or rolling over. He has had one abnormal EEG and has another one scheduled along with an MRI, hearing test, vision test and birth to three services. He was on 60 mg of phenobarb and was switched today to topomax as he has been still having about 20 siezures per day. It is so devestating to watch and hard to stay positive but I am doing the best I can. It is encouraging to know that I am not alone. My son has not been diagnosed yet besides being told he has epilepsy as that is only the act of having mulitple seizures, what is causing them we don't know.
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replied February 3rd, 2008
seizures
Hi i have a web site that i have found useful in the past. it is an english site but i receive a news letter from them every month. sometimes they have good stories and advise.

www.epilepsyresearch.org.uk

hope you find something useful. they may even be able to give you an american site if you ask them.
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replied February 26th, 2008
New member-describe seizures?
Hi all,

I'm currently in the beginning "tests" stages with no diagosis yet for my 1 month old.

I was wondering if any of you would consider describing what you are seeing in your infants when you indicate seizure?

I have a one month old with some very vague, hard to categorize symptoms, but on most forums/sites there are no actual descriptions by parents of very young infants of what they are seeing.

I apologize if this is inappropriate - but we are just trying to gather as much info as possible.
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replied March 27th, 2008
Describing seizures
when my daughter just turned a year old, she had a seizure. her arms were twitching, pumping her hands. her eyes were rolling in around in her head and her breathing was a short quick breath every 20 seconds or so. She was unresponsive to her dad's voice and turned blue. This happened again almost 4 months to the day. It was the second time that the doctors actually diagnosed it a seizure. Test after test, they found out it was her low iron which was causing the seizures. Iron is what helps give you the oxygen to breath, from what i understand.

I implore everyone with seizing children and no diagnosis of why to get their iron checked!!! I hope this helps truckdad.
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replied March 27th, 2008
Describing seizures
I forgot, my friends daughter had a seizure, but it was a silent seizure. She wasn't able to keep herself up, her heartrate was really fast and so was her pulse. She was staring off into space and wasn't acting herself. This kind of seizure i think is the worst because it's not very detectable.
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replied June 7th, 2008
seizures
My mom, my sister, my daughter and my nephew all had seizures as infants all caused by calcium defiencies. They tested for calcium but it was a specific calcium that came in low. They all were medication until the calcium was built up then the medication reduced. All are fine and no more seizures since.
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replied June 14th, 2008
Infant seizures
Hi Virginia... I am responding to you because I, too, have a 2 month old daughter who has been having the same thing since she was 6 weeks old. She, too, is a normal happy baby when she is not seizing or completely drugged up. She is on Phenobarb and we just recently started Topomax just yesterday. I was curious how your son has taken to that and what your dosage is? How much Does he weigh? we have had all the tests and every thing has come back normal. This is absolutley devastating and we are thinking of going to boston childrens hospital for a second opinion. Did you get one? I am interested in hearing back from anyone about this topic. We currently have about 5-7 seizures a day, mostly when she is going to sleep or coming out of it. They have only recently gotten a bit longer in nature. Doc thinks she will grow out of this? Is that what yours says?
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replied July 15th, 2011
Virginia and Kristin,
My grandson is 14mths old and has been having unexplained seizures since his 6mth shots and they have now become longer in lasting 45min the one he had on Saturday afternoon. The Neurologist said if he has any more after he starts on Topomax that he will send him to a clinic in Seattle, WA. We are at our wits end as when they first started to occur they life flighted him to Denver, CO and even there they could not give a reason for the seizures!!! Raymond
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replied June 15th, 2008
infants
Does anybody have an infant who has panhypopituitarism, optic nerve dyplasia and epilepsy, our babe is 8 months old, would really like to share info. Ta Pat
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replied September 10th, 2008
my story
Hello to all the mothers who nightmares we share while are children suffer from this siezures and we get no answers..my daughter Melinda, now 3 yrs old has had 10 fehbral siezures since the age 1... after the first one they pretty much swore that she would never have another one....then they just started comming..again and again...in and out of the top hospitals in massachusetts, but left with no answers...one of many neuroligist told me she may just be one of these children who have fehbral siezures..and told me they will stop...and the start again...now with rashes...they did evry test out there..mri.ct scans,eeg,ekg's...and no answers...they did a spinal tap and could'nt walk for a month...my heart feels weak like i can't save her...and they come again..always in the middle of the night...and i don't know how..but i just wake up..they say mothers instinct..today i woke up and went to my parents house..i was looking through my fathers dvr and saw "mystery diagnosis".. he recorded a show about this little girl who was having the same kind of siezures as my daughter...exactly.. the show said that her calcium level was low and that was causing the heart to skip and cause the siezure.. im on my way to the lab to have her calcium level drawn... i feel in my heart this is it... good luck and remember..you are not alone!
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replied September 10th, 2008
to - my story
When they checked my daughters calcium first time did not find it - but it was a certain type of calcuim. There was also a magnicium deficiency also. GOOD LUCK!!!
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replied September 21st, 2008
my baby's seizures
Hi. My baby is 8 months old and just started having seizures this week. We are terrified. He turns blue, eyes roll back in head, goes limp, and then doesn't recover for several minutes. It is awful. We are headed to see a pediatric neurologist this week, but I will definitely ask about the calcium levels. I pray it can be fixed quickly. It makes me sad there are so many of us that are dealing with this. Good luck to you all!
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replied September 30th, 2008
hi, i can relate to this...at 4 month of age my son became ill. at first they thought it was viral encephalitis. he was having 10 - 15 episode a day and lasted for 5 to 10 minutes. they were called full body jack knife. when he came home from the hospital at 4 months old they had him on phenobarbital, later they said they it was over. after 3 weeks of not being on phenobarbital he started to have seizures again, so back to the hospital we went. they put him back on there and a few weeks later put him on valpotic acid (sorry if spelling is wrong) they told me that phenobarbital slows them down. He is now 11 months old and is regaining his strength back from the virus he had. he had no neck or arm control. he still does not roll or sit on his own and does not hold his bottle. etc... i love my son to death. they told us that infant epilepsy often goes away by the age of 3..so we are keeping our fingers crossed. everyday is a new day for us...signs to look for
rolling of the eyes, finger and toe twitches, spacyness, body throws. if they don't regain conscious take him or her to the ER...
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replied January 20th, 2009
Nystagmus
Hi! My daughter is five months old. At 2 months old and three months old, she had episodes where her eyes would jerk horizontally to the left for 5 to 10 seconds at a time. Her body did not jerk and she did not lose consciousness, but her head would lean down to the left and she would scream. Both times, my three other children were all in her face talking to her at the same time right before it happened. She is developmentally right on track. She rolls over, has found her feet, smiles, giggles, 'talks. I'm just trying to figure out if this is a seizure problem or an eye problem or just a fluke thing. Has anyone experienced anything like this?
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replied January 27th, 2012
Infant Seizures, Eye Deviation, Head Deviation
Just wondering if you ever found out anything with your daughter. Has she had any problems since? My daughter had a problem that sounds almost the same as yours. She is 9 yrs. old now. My daughter was diagnosed at 4 weeks old with epilepsy. They were seizures. Her eyes would deviate to the left, and her head would turn as far as she could turn it to the left. She would scream a lot because of them. I thought couldn't possibly be seizures because she would stay that way eventually. It got to the point where she would never make eye contact and her head was almost always turned to the left. We put her on Phenobarbitol, and it took them away. I took her off at 9 months old, and she seemed fine, except that she had severe developmental delays from the medication. Now, 9 years later, we started noticing that she was having seizures again. Our first appt. back since she was 9 months old will be tomorrow. I haven't a clue what this will bring. We thought maybe she was misdiagnosed as an infant, so this comes as a complete shock to us. I hope your daughter made it through what she was going through.
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replied February 11th, 2009
Length of seizure
My 10 month old son Had a seizure last saturday. The Dr.let it go on unmedicated for 1.5 hours, with Valium suppositories down the hall and Ativan in hand. He said it was better to just cool him, his fever was 102. They tried nine times to place an IV during the seizure. It took a week for him to start to be himself, and he is still not quite there. We have faith he will be OK, but it seems this is not the proper way to deal with an infant seizure. After watching my boy seize for that long under the care of a non caring MD I am very angry. And don't know what is right.
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replied February 16th, 2009
4 month old baby with seizure
Hi. My son Gavin is 4 months old and is diagnosed with epilepsy seizures. He turns blue, stops breathing and goes limp. This happens about 30 seconds to one minute. When ever he has one he always has a cluster of them about 8. We always rush him to the hospital (CHOP). It has been 4 weeks since his last episode. He is on topomax and phenobarbital. I hope for the best. Can anybody relate?

Jim
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replied September 22nd, 2011
Jim, we're just starting down this road. First seizure was on Tuesday. Five month old daughter is at CHOP in Philly. I see your post is from 2009. How have things worked out for you son?
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replied June 11th, 2012
My son Ashton has had seizures since he was nine months old he is now 15 months old at first they started maybe once a month *starting in december as of april they were coming at least once a week* he has had 17 total he spent 2 days in chop in april an has had eegs cat scans blood work urine tests spinal taps an mris an nothing an they doctors want to write him off as having febril seziures but i know there is something more an he has had a rash all over his body except his legs an lower arms which they dont know whats causing it so far he hasnt had a seizure since may 19th 2012
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replied May 21st, 2009
4 month old with epilepsy
Hi, My daughter Morgan is 4 months old. She has been having seizures since 2 days after her 2 month shots. She has one grand mal that lasted 2mins and two weeks later had another grand mal that lasted 2mins. She went for 3 weeks without one then had a large cluster. We took her to the Children's Hospital in Cincinnati Ohio. They diagnosed her with Epilepsy, she has Generalized Grand Mal Seizures. She is currently on 100mg of Keppra twice a day and she seems to not be having any more seizures. The keppra makes her tired and not have much of an appetite but its better than the seizures. She has Larynigomalacia and Aspirates thin liquids as well. They arent sure what causes the seizures but they seem to be under control for now. We can only hope for the best.

Her seizures were full body rythmic jerking, with eyes rolled back in head, small amount of foam at mouth, blue lips, and when she would come out of it she would vomit then sleep for hours on end.
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replied July 6th, 2009
My nephew started having seizures less than ten hours after birth. He had over a dozen seizures in his first 24 hours. We just had an EEG done and are awaiting results. Docs don't have any answer on what is causing this or what the outcome will be other than brain damage or death... This is such a scary thing.
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