ok so as if my poor dd hasn't suffered enough lately, here is something else. I noticed a few weeks ago that while holding my dd in my arms that she just started shaking uncontrollably it seemed. it lasted less than 30 seconds and she didn't seem phased at all by it. she seemed completely normal so i just shrugged it off, well just a few minutes ago we were all sitting on the couch and my dd was sleepy and nursing. all of a sudden she started shaking again, it was so scary this time, even dh got scared! but again it only laster for maybe 20 seconds. and the confusing part was that through all of thay her breathing stayed relatively the same and she never stopped nursing or opened her eyes. I have dealt with seizure patients with varying degrees and it does not seem to be a seizure to me. she doesn't seem to lose conscienceness or be troubled at all. my dd doctor is out for the rest of the week so i cant go and see him, a trip to the er would be useless umless she does that while she is there. does anyone know what this can be? i am at a loss:confused:

It sounds to me like a seizure. My brother was exactly the same way, he is now 18 and is on medication for his seizures. I also have worked in the past with epileptic patients. To me, that's the way all signs point. Most people who have seizures do not lose their conscience, atleast, the people I have worked with. Deffinitely get it checked out..

I would have to agree. I too have worked with children with seizures of so many varying degrees. Many of the kids I have dealt with had similar activity initially and then it would change into something more noticeable when the got older.
It can never hurt to be cautious.

sorry about how i worded things earlier, i didn't mean to lose consciousness as if fainting or anything like that. I have been thinking a lot about this since it happened and am really scared now. I don't want her on those horrible seizure medications. the adults that i have worked with that were on those meds became basically different. i don't want all of that for her. i am definately going to keep an eye on her and see if it happens again. we are going back to her regular doctor in a few weeks and i am going to bring it up to him. thank you for your replies. i just hope that she doesn't have anymore episodes like this and maybe it was just like a two time thing? lol! but yeah i will definately bring this up with her doctor. thanks ladies!

well after doing quite a bit of research and of course your replies! i am thinking that it could very well be simple partial seizures or something of that sort. i am going to get ahold of her doctor's staff and see what i should do. she just had another 'episode' which lasted about 10 seconds at most. i am so scared for her and i dont even know where to start! her doctor wont be back in until monday but i think this problem should be addressed immediately. i am off to look for support groups and determine what the next step should be...

I know how you could be worried about seizure medication.. My brother has been put on so many different kinds.. His side effects have been listlessness (sorry I don't think I spelled that right), extreme weight gain, and one made his temper VERY bad. BUT an old friend of mine has an 11 month girl and she was diagnosed as epileptic.. After 3 different meds, she was put on a new med (it may have been a clinical trial, not sure) that is wonderful and no side effects that my friend has noticed. I haven't spoken to her in a few months, but I can try to contact her and find out the name of the med her daughter is on.

Please keep us updated on your little one, seizures are something that hits close to home with me. I'll keep you and your daughter in my prayers.

My DS started having seizures when he was one hour old and was put on phenabarbatol AKA phenabarb, until he was 6 months old. When he had seizures the most important thing the doctors and nurses told me to look for was he was still sucking, that meant it was only a partial seizure, some of the times you couldnt even tell he was having a seizure. Now that he is older I found out that seizures are quite common in toddlers when they have a fever. Have you noticed her temperature when this is going on? That is something you might want to look for and do some research on. Please let me know how it works out, seizures are so scary and it is really hard watching your own child go through it. Sara

hey everyone! we're back! we were admitted to the hospital tuesday for the 'seizure' activity and also bad ear infections :( the doctor doesn't really think that she has a seizure disorder as of right now. i do know that infants can have febrile seizures when a fever gets too high and that is what i always checked for when she had one of these 'episodes'.but she didn't even have an elevated temp though. so we had an EEG done yesterday. We also had chest x-rays which showed a possible enlarged right atrium. so now we had to also have an ekg and an echocardiogram done today as well. My poor baby has been through so much this week. she had to be poked NINE times to get her iv in twice! she had to be put to sleep for the eeg. we really won't know anything until monday though. because her doctor was out of town we had to do all this through his 'replacement' and we will have to contact his office for the appts with the nuerologist and cardiologist. the doctor thinks that most likely it was something to do with her electrolytes being off balance or something of that nature. i am so scared for her and i have been really strong, especially when they told me something might be wrong with her heart! but i have faith in god and i have great support so i know everything will be ok. we just got out late this evening so i haven't had time to do much research on this. i can tell i'm probably going to have to dig deep for info on how this effects infants but i will roll my sleeves up tomorrow! lol! i just thought i would update everyone on how she is doing. i am thinking if it does happen to be seizures that it is just a simple partial or something of that nature.i really hope though that they don't find anything wrong with her but that it never happens again. we'll see!

Steph, thanks for the update. Sorry to hear she's beein going through so many tests. Hopefully the drs will quickly find out what's causing this. Please continue to keep us updated!

My son does that when he's drifting into sleep. My ped told me that they are night tremors and it's VERY common for babies to have them. His breathing stays normal and doesn't last for long. Sometimes his head just shakes or his upper half will. Get her checked out though, it might be night tremors or something else. Good luck!

hi everyone! thanks for your replies! mj- i have thought about it being night tremors and have researched it and brought it up to the doctor and we dont think she has that since there have also been times where shes wide awake while having one. thankfully she hasn't had one since wednesday evening(yay). i called the doctor this morning and the earliest he can get me in was wednesday, then they just called me right now and said he wasn't going to be in and the earliest they have is october 6! this sucks! i am thinking of calling that other doctor and seeing what she says about it. it doesn't make any sense to be waiting that long just to get the results. and we have to get the referral from her doctor so her insurance will pay for it. it really sucks and im not sure what to do? as long as she does not have anymore 'episodes' i think i can wait but if she does........?

Aww I'm sorry! I really hope she gets better and it turns out to be nothing major. You both are in my thoughts and prayers. Good luck.

Oh Steph I feel for you, DS had all those same tests performed when he was a week old, they even did a spinal tap! He had problems with the IV too and they finally had to go through his cord stump. I was suprised to read she was put to sleep for the EEG, DS had to stay awake so they could see how his left side of his brain was talking to his right side when he was moving and kicking and stuff. One of my first pictures I ever took of my son he has all those wires hooked to his head. I really hope they find an answer for you because they didnt for me. We had to wait just like you because the EEG was performed right before a 3 day holiday weekend so all the doctors were on vacation and there was no one to read the results so we had to wait in the NICU for an extra 3 long hot terrible days (it was 4th of July weekend). Anyways one of the things they found on DS was he had encephalopathy-I think thats how you spell it-anyways it was swelling of his brain that "may" have been causing seizures. I lost so much hope for doctors after all that happened, I swear the nurses knew more then the doctors. All they did was perform a whole bunch of invasive, expensive tests on a one week old baby and come up with nothing and try and make themselves sound smart telling me they have no idea what is wrong with my son. Sorry for the rant. Anyways, I am thinking about you and your daughter and I hope you find some answers. Take care, Sara

I have a two year old with seizures.
He did these "episodes" as you described as an infant. I too, shrugged it off. At 15 months old, he had 5 grandmal seizures- which of course- I couldn't just shrug off. Since hten he's lost his speech and also delayed in developement. He was diagnosed with Complex-partial epilepsy. He has autism now as well.

My son tried several meds, none worked- until we found Keppra. It's been our miracle drug. He isn't any more violent than before either. Which is part of his autism- but I wanted to say that meds aren't neccesarily bad. A lot of parents and children and adults benefit from these meds. For my son, a simple change in diet didn't seem to work, nor did anything else-
I'd rather the meds than to watch him suffer with seizures throughout the day, which he was doing before the Keppra.

My son (one of a boy/girl twin set) who is 4 months old has had activity like that since he was 1 hr old. We had a CT scan and an EEG and were told it's just a tremor, though I worry it's something a bit more, we are going for a 2nd opinion soon, please post when you get a diagnosis, I'm very curious.
my son was given the diagnois of Benign Tremors.

wow- I am very sorry that we all seem to be in this boat right now. I am so sorry about your children and I hope that they all continue to thrive and grow. I am still waiting to get into her doctor and I continue to pray that it is nothing serious. I am thinking more and more of making them do a ct scan as well just to get a more accurate view of what's going on in her little head. Esp after reading mamaglitterbug's post. I am so sorry about your son and I can not imagine how devastating this must have been for you. I will pray for all of us. So far she has not had anymore of these 'episodes' again. mamaglitterbug, did your ds have these little 'episodes' often? or was it just a few times and then nothing again until 15 months? I will be sure to definately post what we find out for the doctor (when we ever get in! lol!). Should I ask to have a ct scan or an mri done? which one would be better?

To answer your question:

Isaac, my son had this go on from birth until 9-10 mo. Then there was this silent period and we thought he had outgrown it.

At 15 months was the grand mals. So yes there was a period of time that nothing went on.

Steph, if I were you, my next step would be to head to the ER. If it's nothing, then you'll have piece of mind, either way, it's definitely not something I would think another minute over. I now you're scared, but trust that the doctors know what they're doing. Please let us know what happens, I'll be thinking of her........:angel:

Steph, I'm sorry, i didn't realize that there were 3 more pages, and that you took her............hang in there.

Steph

I am not saying this to scare or worry you, but I want you to be fully prepared.

When Isaac had his grand mal seizures, immediately he was hospitalized for seven days. During the course of those days, they ran many tests: spinal taps-blood and urine samples-MRI-CTscans-EEGs, everything came back normal.

This happened the week of Thanksgiving 2005....Isaac continued to have seizures, many a day at times. During the next few months, he was seen every four weeks or so by a neurologist. He had three additional EEGs and tests ran, all of those continued to be 'normal'. He was taking and tried many different meds to stop him from seizing. In MARCH 2006, we finally did one last EEG, and I prayed that if there was something truley wrong- it would show up something. That was the ONLY EEG that ever showed up anything, and they found slow spike waves in his left frontal lobe. He's had other CTscans since, amongst other tests, including genetic panels- and still nothing has shown up.

My point to this is that you must be an advocate and KEEP ON THOSE DRS TOES until you get answers. There will come a time that they will want to throw their hands up in the air in frustrastion and won't want to test anymore, YOU MUST BE STRONG! DO NOT LET THEM PUT YOUR CHILD'S CARE ON THE "BACKBURNER", CONTINUE TO TEST.

I have been fighting them for several months to do a VIDEO EEG. One day I will succeed in my fight, and will have one done. A video EEG is much more advanced- as they record your child's brain waves AND they also videotape him...usually this procedure is overnight or for several days/nights. I also want them to decrease his meds slowly and safely, but I want him medicine free for the EEG. I know it sounds strange, but I want him to seize during the time of that EEG, so they can have him videotaped and see his brain waves, and can tell me more information.

Just hang in there, BE STRONG.

Jessica