what kind of seizure is my son having now?? please help

Michelle - posted on 03/29/2013

hes having grand mal seizures askthe doctor about dilantin or lamictal zonegran is very good for grand mal

Shelly - posted on 01/22/2013

It would be maybe, called a Grand Mal seizure. There are many kinds of seizures and a person can have more than one kind of seizure. Medicines, illnesses, blood levels, hormones, activity, growth spurts or excitement, or many other things can cause a person to have different kinds of seizures. My daughter has had epilepsy since birth. She has had many kinds of seizures. Eventually medication levels can be adjusted so there are fewer or no seizures. Unfortunately if the person is getting a virus, had a big, busy day or one of the things mentioned above, can cause more seizures. My daughter is 31 & still has seizures a few times a month. Some medication combinations work betterfor one person but not the next. Each person is different. It is a journey. Finding what works best for your child may take time.

April - posted on 09/02/2012

Two yes later I hope he's better. My grandson is 1 and has polymicrogyria as well....its a bitch. These poor babies shouldn't have to go thru all this

Bronnie - posted on 12/22/2011

hey sorry to hear about your son, my daughter is 36 hours ol and not even 24 hours old she started having seizures, get them to run test as that what they are doing for us, you need to get on top of it, not something you can ingore. get them to send away for more test and stuff.

Dani - posted on 12/15/2011

My son had what I call his "Episode" when he was first 8 months old. After a few hours of being asleep...He would start gasping really fast with short spurts of a short cry. His left arm was also completely limp, while his right arm was strong and bent up. He has now recently done it again a couple weeks ago. I told his pediatrician about it today and she ordered a EEG to be done. Do these sound like seizures?? she thought they were night terrors..but after reading over the pamphlet she gave me..it's not that at all. He remains asleep..eyes closed and impossible to wake up and normally last 3-10 min. It is really starting to scare me especially after this 2nd "episode"

Cheryl - posted on 12/15/2010

A few things I have come to beleive after 4 years with two children with seizures plus additional challenges.
1. There is a difference between a neurologist, pediatric neurologist, and a epitiologist (spelling may be wrong) We have an pediatric epitiologist...that is a pediatric neurologist with additional training in seizures and specializes in just that area of pediatric neurology. I have learned to skip right to one of these and they usually practice at a epilepsy evaluation center/medical center. In the future I will skip even dealing with a pediatric neurologist.
2. Video taping is wonderful. modern phones fantastic cause the doctor can see what is going on.
3. Some one asked if there has been an eeg yet..this is a tool used in diagnosis...there can be a lot of information gained or a child can have a "normal eeg" and still have seizures.
4. I have quit looking for "the answer" in our case we just get another piece of the puzzle. We were just at the video taping unit for the second time in two years. Result we left on friday knowing more then we did on monday. A big piece of the puzzle came but that is still just a piece. Seizure pattern had changed and we went from a diagnosis of partial seizures to one of generalized seizures. With possible absentee and possiible partial seizures as well. This is not a world of absolutes. Frustrating but less stressful once I accepted that.
6. As someone else mentioned. Get the referal now and appt scheduled asap as it takes time. We screwed around with two pediatric neurologist because traveling that far and being gone that long seemed like the last thing to due. Now it is the first.
7. Journal or document daily. Not just the bad but the good. Not just suspected seizures but anything. Like emotionalism, temper tantrums, strange sensations. Our youngest has uncontrolable itching for 10-20 minutes "all over" the doctors don't know what it means but it is definately runs just before seizure activity. The oldest has his right ear and side of the face and neck turn bright bright red. They have become clues. Still don't know the meaning.

Nicki - posted on 12/11/2010

wow....sounds like you maybe should change Neurologists...that sounds like a Grand mal seizure to me....good luck!

Jami - posted on 10/13/2010

I really hate hearing all these stories. It is so sad that children have to go through this, but it has helped me with my son's seizures. He has had partial focal seizures for 3 years now. He got an infection on his brain when he was 2 1/2 and was hospitalized for 6 days where they determined that he was having silent seizures at first and now he has a jerk of his Left hand and arm. Weird thing is he only has them when he goes to sleep IF he has them. He was started on Dilantin, but we changed that due to the damage it was doing to his gums. We are now taking Lamictal, Keppra and Topamax. We started seeing a new neurologist and he is stopping the Keppra! He is on such high doses of these meds it's a wonder how he functions. He is taking 125 mg of lamictal 2 times a day, 3 ML of keppra in the morning and 4 ml of keppra at night, he also is taking 25mg of Topamax in the morning and 45mg of topamax at night. Just wish there was an easy cure for all these little ones.

Priscilla - posted on 10/08/2010

Yes my son was 8 mths old and statred having seizures after having his DPT shots given to him.

Jessie - posted on 10/08/2010

some seizure activity is emotional , visual, or gastrointestinal. so he may not have external signs of what he is going thru. check out a book called seized about Temporal lobe seizures.

Jessie - posted on 10/08/2010

please contact the epilepsy foundation; google them. or call they are very helpful. hang in there , is your son on meds? is it helping? stopping breathing is serious, watch him closely. get help if he continues not breathing long. ask the MD what to do in this situation. take care.

Jeanette - posted on 10/02/2010

this sounds like grande mal seizures. my daughter who is now 9 has been having seizures since 6 months old. she has different types but this is the most common for her. does your son have any other problems or is it just the seizures? hope this helps good luck x

Jennifer - posted on 10/02/2010

I am not a doctor but my son had episopes like that and the doctor called them gran-mal seizures

Kelly - posted on 09/29/2010

immediatly get an EEG done, for i cannot stress this enough. if the doctor isnt moving fast enough find another neurologist. He is deflinatly having a seisure just what kind im unsure for I only really know my daughters which is benign rolandic epilepsy. Find a doctor that will treat the ENTIRE family, for that is very important. ypu are going to need strength to get thru this. I wish you the best of luck. sorry i couldnt be of more help to you.

Kim - posted on 09/29/2010

The seizures your talking about sound just like my sons. He has been having seizures since he was 18 months old and is now 3 1/2. They happen mostly with illness but can happen at any time. His whole jerks, very dramaticly.He can have several at a time. His doctors havent given them a name, but I did some research on-line , they sound very similar to a type of seizure called MYOCLONIC. Im not a nueroligist but, the info i got sounds just like what my son has. Next time i go to the doc im going to ask.

Wendy - posted on 09/29/2010

Hi Beth,

My daughter has had a couple types of seizures since she was 4 months old (including infantile spasms) and she is now 8 years old. As I've read all of the responses 2 things stand out for me. I think that video taping them is an amazing tool. We did this with our daughter and it saved a lot of frustration. Also, naming the type of seizure is really only important in some cases as I understand it. If your Doctor is not suggesting medication changes at this point, I would definitely make an appointment with another Pediatric Neurologist. I wouldn't waste any time making a new appointment as it takes time to get in. You can see them both for a short time until you decide which style fits best for your family. It sounds to me like your current Doctor is on the passive side for my taste. My daughter was lucky to respond swiftly to Valproic Acid. It has controlled her seizures well to this point with only a few breakthrough seizures here and there. You will have a gut feeling at some point that will lead you in the right direction as far as Doctors. The one thing that I am very clear on after dealing with my daughters health problems for years is that my maternal gut feeling about whats happening with her has never been wrong. Believe in yourself! You are her best advocate.

Brandy - posted on 09/29/2010

If his eyes where closed I would dare say they are Grand Mal seizures.My son has episodes like that except his eyes are closed.You might Google Grand Mal and see if they occur when the eyes are open.

Linda - posted on 09/29/2010

I think you may want to take him to another neurologist. These neurologists are suppose to know these things. My son had something similar but his arms would go straight out and he would look frightened and stay that way, the same with the shallow breathing, drooling, legs were drawn in, but hands were open and sometimes he would turn blue. They put him on Phenobarbitol but he would sleep most of the time. When they did an EEG and an MRI, that was when they realized that his entire right hemisphere was malformed and it was seizing constantly and the seizures were crossing over to the left side. They did a hemispherectomy at age 5 1/2 months old. I hope you can get another opinion and get some tests done to determine the cause and cure! May God bless you and yours.

Shauna - posted on 09/29/2010

Beth, my son has a brain malformation - Holoprosencephaly. He started having infantile spasms at 7 months old, he is now 5. It sounds like your son might be having myoclonic seizures. My son is on a few seizure meds but the one that has been most effective for him is Sabril, it has only been FDA approved in the US for a year now so some neurologists arent real familiar with it, you might do some research on it. Hope this helps! Best wishes, Shauna

Michelle - posted on 09/29/2010

Hi,
I have been there, and I know what you are going through. Is he starting with one side of his body? Is the right arm or left arm for example starting to jerk first? My son had partial complex seizures that start with his right arm jerking, and they it can get more intense. Sometimes it will develope into a grand mal seizure. We have found that the brand name only lamictal has worked for him. It doesn't sound like your Neur specializes in seizures. We ran into the same issue and left our first doctor. Now I drive 2 hours to a better doctor that specialized in seizures. It has really made a difference. I have also noticed that the generic lamictal doesn't work as well as the brand name. I hope this helps you. It is such a stressful time, and I pray that you will have peace soon!

Amber - posted on 09/28/2010

my son was diagnosed with infatile spasms on his first bday. he is now 2 1/2 and they have never been completely controlled. we tried topomax and now sumthing his dr said id new called banzel. and he is on keppra. with my son it was the same thing, they couldnt c it so they couldnt do anything. we have also just changed docs. hope all goes well!

Tammy - posted on 09/28/2010

My granddaughter has had seizures since she was four months old, They diagnosed her with Tuberous Sclerosis. They first gave her a series of shots of steroids and that seemed to have keep her spams under control for a while then she started having seizures in her sleep and sometimes she would have them while awake. The symptoms of her seizures in her sleep are she would open her eyes wide open and she will stiffen up like a board, shallow breathing and then she would start smacking her lips. While awake she would have a blank stare, her lips would turn blue and pretty much all of the symptoms while she's sleeping. She would get very drained and tired after having a seizure. She is on Keppra right now and it seems to be working. She was also diagnosed with Autism at three and is now five years old. Even though I know God has his reasons I still question why these poor children have to go through such an awful experience!

Beth - posted on 09/28/2010

thanks everyone who replied. i was a great help. i have been told by several people that it sounds like a grand mal. his doctor wants us to record it next time so he can see what hes doing and give a diagnosis. but i have described what hes doing and he dosent know what it is so we are trying to get an appointment with another doctor for a second opinion.i just wish they would completly go away. NO child should have to go through something like this.

Virginia - posted on 09/27/2010

Beth I also think your son is having Grand mal seizures.The reason i am saying this is i have them myself.I have had the seizures since I was 10 months old and I am 53 yrs. now.They should be able to tell what kind of seizures hes having .I have many different types of seizures. When I have a grand mal My body jerks and I drool or foam at the mouth.sometimes I go to sleep after wards and sometimes I dont. To stop breathing is part of the seizure also.I take Keppra, Phenebarbatol and Dilantin for my seizures.

Amanda - posted on 09/26/2010

It sounds like grand mal to me, similar to how my son's seizures are. Hard to say though, even seeing them the neurologists sometimes have a hard time determining.

Trish - posted on 09/25/2010

Try http://www.epilepsy.com/
My son has different types of seizures and cronic migraines so I know how it feels to want to know what and why.

Donna - posted on 09/24/2010

my son has had different types of seizures since he was a day old due to an infection he caught that spread to his brain, he is 9 now and i can tell u in most babies they change with age. chase had infantile spasms from birth till about 6 months then he went to clonic tonic now he has traveling localized and some signs of grand mal (grand mal is what it sounds like ur son is doing) im not a dr or anything but i do have 9 yrs of this under my belt. the best thing is to question his neuro, over and over again, if u dont like what ur hearing ask for a 2nd opinion... as for meds chase has been on the same combo for yrs phenobarbitol and keppra, his pheno level has to stay on the high side (above 19 for it to be theropudic) and the keppra helps keep it there without having to raise it through the roof. he has had 2 seizures in the last 5 yrs both because his levels got to low. thank goodness his r controlable. but everytime we go to a new neuro they say he is always having brain wave patterns that show seizure activity and they dont no why he doesnt show outward symptoms of them

Beth - posted on 09/24/2010

my sons spasms were not caused by vaccinations or fever. his brain did not develop normally before he was born and his MRI results showed he had extensive bilateral cerebral polymicrogyria.

Julie - posted on 09/24/2010

Did either of your children have a fever related to the vaccinations they were just given?

Victoria - posted on 09/23/2010

she started having the spasms after her 4 month vaccinations, which they say have nothing to do with the infantile spasms?? she was immediately put on prednisolone and it stopped them completely in 3 days. since then she hasnt had another episode and shes been weaned off the pred for 1 1/2 months, but i am still watching her like a hawk. did they find an underlying cause for your son? this stuff just breaks my heart knowing these innocent babies have to suffer like this!

Beth - posted on 09/23/2010

yes he has been having the spasms since 4 months. these new seizure just started about a month ago. he is currently taking zonisamide. we have also tried prednisolone and topamax. which none completely controlled them. have they said what is causing your daughters seizures?

Victoria - posted on 09/23/2010

my daughter was diagnosed with infantile spasms when she was 4 months old too. has he been having seizures since he was 4 months old? what type of medication is he taking? im sorry for all the questions, this just happened with my daughter 2 months ago.