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...

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

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.

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.

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.

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.

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.

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.

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?

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

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!

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!!!

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!

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...

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?

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.

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

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.

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.