4.5 month old Boy with possible seizures

Leslie - posted on 01/22/2009 ( 16 moms have responded )

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Hello since Saturday my son has been having convulsions once or twice a day lasting for about 10 sec. They always happen as he is falling asleep while feeding. I am fairly certain they are seizures as I used to work with 4 children with various types of seizures. We go to see the pediatrician and I want to know what sorts of things to ask and advocate for so that he gets the best care possible.

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Kim - posted on 02/03/2009

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All of the ladies have givin you great suggestions. I feel the best thing that you can do is record them if possible. Most cell phones have video capability, if you have one that does that then you can easily bring it with you. Not always does the 1st EEG show something. My son had West Syndrome/Infantile Spasims and his 1st 3 EEG's didn't show any signs. Hang in there though, it sounds like you are doing everything you can.

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Lauren - posted on 02/05/2009

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My sons seizures last for about 2 mins each time, thankfully he is on Tegretol and has responded perfectly to that and hasn't had any more. But we were told that the seizures won't do any brain damage unless they last for over 10 mins. Hopefully this will put your mind at rest a little bit until you get some answers.

Deborah - posted on 02/04/2009

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i know how you feel! we ended up paying for the ECG in a private hospital as i wasnt prepared to wait, mind you, i had to "beg borrow and steal" from family and friends!!!

then the results were clear! and we were back to square one, but owing money to everyone! same thing with the CT scan!

How can a hospital make a baby wait? its a sad situation, but monday will be here before you know it.

just hold on, y

Leslie - posted on 02/04/2009

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Thank you all for your advice and support. I was very hopeful after the Pediatrician appointment but now that is waning.  Before the appointment Grady only had 6 episodes and then they had stopped for the week prior to the appointment so the Dr was certain they weren't seizures but was still sending us for an EEG.



Of course the day after they started up again. Both the pediatrician and our family doctor say that because they happen as he is falling asleep it is just normal baby falling asleep twitches but I feel they are more than that and they don't happen everytime.



He has had 6 more episodes since Jan 28. He is non-responsive, his whole upper body shakes for 3-10 sec (today he had back-to-back ones) and the shaking doesn't stop even if i hold his arm or head.



So I called the dr. office and thay said it is a 4month wait for the EEG! How can that be? I am so worried and this waiting is terrible. We managed to get another appointment with the Pediatrician for Monday but that seems so far away.



I will try to record then but the are so short I doubt I will catch it.

Deborah - posted on 02/01/2009

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hi!, first of all, i have a 7yr old called Grady!!! i love your choice of name!

my 5mth old Harri, has just been started on epilim due to seizures, he has up to 14 a day, its very scary,

he starts by screaming out, arching back, head goes down onto his left shoulder while at the same time his eyes roll backwards to the left, his fingers and toes "twitch", he makes a strange moaning noise, then after 30-40 seconds, he seems to start to come back but stares off to the left for another 30-40 seconds, his eeg and ct scans came back clear.

im terrified of what damage is occuring in his brain.

keep up getting him checked if your worried!

and good luck.

Rebecca - posted on 02/01/2009

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Hi, not sure if its to late to reply but we are currently and have been for the last 6mth going through the diagnosis process with my 6mth old daughter, she does something similliar to your child, she has been diagonised with sandifers syndrome and still investigating epilepsy because she still has seizures, our doctors have asked us to try and vidoe tape the events -- we often dont the the actual seizure because they are so short but the after effects are helpful also. this might be a good idea as i found that doctors dont like to believe what they dont see and its hard because how often do babies have seizures in the doctors office

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my son who is 23 months now atrating having seizures on nov. 18th of this year and like your son theystarted out as just 5-10 second twitches and at first i didnt know what they were but i knew it wasnt normal so i called his dr and explained what he was doing he was turning his head to the right and his eyes were also going that way and he was glazed over and not responding and the dr said it sounds like seizures lets get him in for an eeg which in turn came back that he was having small seizures on his left side of the brain so we were then sent for an mri which they saw a tumor in his left frontal lobe so now he is on kepra and lipitral for the seizures which were coming more frequently and lasting up to 2 minutes and were getting worse each time he now falls to the floor and it is just aweful he has a hard time breathing and his eyes would roll up into his head and he would actually pass out afterwards. it is just so scary. he has had his second mri and there is no change in the tumor and we were told the dr's believe it is a dnt tumor and benign and low grade so that was a relief. he is now going in to have an eeg video test where he will stay for 5 days and be monitored constantly and they will slowly wean him off the meds and if all goes well with that and the dr's get all there data and information he will then have his surgery in the spring. sorry to go on about my situation but it is all i can think of...

Elaine - posted on 01/30/2009

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What made the difference for me was recording the episode. As my son started developing a new type of seizure I found it difficult to describe and just like a car with engine problems, when the doctor was around my son never had them. In the beginning he didn't believe they were seizures either until he saw the recording I made of one of the episodes. He quickly changed his mind. Get a digital camera with movie capabilities or a camcorder. It saves the frustrating explanation of something you know isn't normal behavior for your baby. Good luck.

Kelly - posted on 01/29/2009

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my son started seizing the day he was born and the hospital pediatrician said it was gas.... Sooo he kept sleeping and not eating because he was so tired from the seizures (5-10 a day) that his actual pediatrician was getting worried because he was losing so much weight. We went in for daily weight checks. after 2 weeks of this I told him that I really think they are seizures and he still said he didnt think they were, but sent us for an EEG anyways. He seized twice during the 30min EEG before the tech stopped it and sent us to childrens hospital. He was then hospitalized for 2 weeks while they ran tests only to prove that, yes they were seizures. The moral of the story is that you are the mom, and if you think its seizures keep fighting until someone listens and does something about it! Keep in mind, EEGs only show if they are having seizure activity at the time of the EEG, so you may need more than one.

Farrah - posted on 01/29/2009

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It sounds like you have a good doctor because even though he doesn't think they are seizures he is still sending for an EEG. So many times doctor's just say no, no, but it sounds like he wants you to have peace of mind.  My daughter started having seizures when she was 2 months old (she's 9 now), they weren't convulsions but a twitching on one side of her body, one doctor said it was baby "jitters" but the other doctor immediately sent us to a neurologist. She was diagnosed with epilepsy at 5 months old. You know your baby best and you should always fight for what you think is right, someone will listen to you. You are your childs only advocate!! Good luck with the test and hang in there...you are doing all the right things.

Leslie - posted on 01/29/2009

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We saw the pediatrician yesterday he doesn't think they are seizures. However he is still sending us for an EEG. I have been documenting each incident (noting time, date, Grady's temp, what is happeing before, length, symptoms and any extra notes) The Dr. suggested to hold the area that was shaking as that is one way to tell the difference between a seizure and just a twitch before sleeping.



Grady went from Jan 17-22 having or or two per day lasting no longer than 10 sec always during feeding and always as falling asleep. The he did not have any until today. the shaking did not stop when I held the areas that were shaking. But again not longer than 10 sec and normal temp.



 



So I guess we just wait now for an EEG.

Claire - posted on 01/24/2009

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Yes, I agree with Leslie - document everything so your pediatrician can have a better picture of what is going on. Time of day, length of time, what it looked like, what he was doing when he started convulsing, etc.

Good luck!

Claire - posted on 01/24/2009

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HI, my son started having seizures at 4 months old. He is now 9 months old and it has been a long road. He was diagnosed as having Infantile Spasms and occurs as he is just about to fall asleep. I first saw it while I was breast feeding and went to the hospital. They originally thought it was stomach cramping but after the doc. actually saw him have one, they immediately scheduled an EEG. The EEG showed abnormal brain patterns called hypsarrythmia. He has been on a number of different meds. including a two month stint of ACTH (steroid). It has been a challenge but he is doing better now and has been seizure-free for two months now. My advice: stay positive (it will be hard to but try), know that there are amazing support groups and early intervention groups to help, and to avoid as much as you can reading stuff on the internet about it. Listen only to what your doctor/neurologist says because the disorder can be very different for every child. I hope you get a good one. My boy is delayed by a few months but he is doing very well. I try to not compare him to other kids because it can be quite hard. I will think of you and pray for you, your family, and our son.

Darlene - posted on 01/24/2009

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The only thing I can suggest is to let the pediatrician know exactly what is happening. The when it happens, What exactly your child is doing etc.  If you don't like what the ped tells you get a second opionion until you get a doctor that will listen to your concerns for your child.  It was hard when my daughter was young to get a doctor to diagnose her, I can just imagine how it is now.  Document how long it lasts when it happens everything you can think of as this is vital information to give to your childs doctor.  I wish you my best

Leslie - posted on 01/23/2009

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Quoting Michelle:

what happens when he's going into seizure can you describe this?



Nothing particular happens as he is going in he just either stops sucking or increases sucking and then his whole body convulses rapidly.

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