Join Circle of Moms
Sign up for Circle of Moms and be a part of this community! Membership is just one click away.Join Circle of Moms
Summar - posted on 05/17/2013
My son had a seizure yesterday for the first time , went to hospital but no one has told me what type of one it was , but from reading everyones comments, im thinking tonic.he was at pre school eating lunch and went stiff slid off his chair, under the table and was making funny sounds. He has to wait a few months now to be seen by specialist, but even then might not get a brain scan. Just feel so helpless
Deb - posted on 05/09/2012
My granddaughter, aged 5, had a tonic seizure on May 4, 2012. She'd never had a seizure before. She was sitting at the breakfast table shortly after waking when she jerked off the chair and hit the floor. Her body was stiff. Head turned. Eyes open. No noise. No convulsions. My daughter took her to the local ER where they diagnosed her as having "new onset seizure". We took her to the neurologist yesterday, who was very kind, but she doesn't even want to do an MRI until after we do a sleep deprived EEG in three months. It was as if she kept looking for it to be anything BUT a seizure. Even though my grand daughters symptoms are classic Tonic seizure, the doctor seemed hesitant to buy into that. She basically said that one seizure does not a seizure disorder make. We get that. We would much rather it be a fluke and done. That being said, to ask us to wait three months and "if something else happens, bring her back", seems to me to be quite ridiculous. Anyone else who has been through this agree?
Sarah - posted on 04/05/2012
My daughter was hospitalized Monday morning. She had a seizure in May of 2011 it was her first and they dubbed it as a febrile seizure because she had had an ear infection and a fever the day before. My husband also had febrile seizures until he was 5 years of age. Monday morning my daughter had a seizure at 7 am and I called 911 and she was brought to the ER. She had a temp on saturday but sunday didnt have anything. At the ER they again told me it was a febrile seizure and that she could go home and just to keep an eye on her. We were walking down the hall of the ER after discharge and she again has a seizure, right infront of the doctors and she turned blue, it looked like she was stone cold. I started screaming at the doctors to do something because she clearly wasnt getting enough oxygen. A huge team of doctors swarmed around her and gave her oxygen and an iv for adavant to stop her from having seizures. They eventually moved us to the Pediactric ER and again after waking up she had another seizure. The neurologist got to see her seizure she turned blue again. She had her 4th and final seizure 6 hours after her first it was the shortest one and she didnt turn blue. They put her on the PICU floor of the hospital took blood gave her an EEG a cat scan they pricked her finger they checked her urine they almost did everything under the sun except an MRI which she is going to be doing in a month and all of her tests came back normal. She was discharged yesterday with the diagnosis of Staph Sepsis and an upper respiratory infection and a chronic tonic febrile seizure. Its a very scary thing and u feel helpless because there is literally nothing you can do for your child. My daughter is 2 1/2 and I am scared to death she is going to be developmentally delayed as well. Since we returned home she has been extremely quiet and wont really talk to me and shes been throwing he stuff around the house and ripping up stuff she usually likes to play with. Im just going to see what she does in the next couple of days. My friends daughter died of a brain tumor because when her mom kept telling the doctors she had seizures they didnt believe her until it was too late and she was 3 years old when she passed away.
Deserie - posted on 04/03/2012
they diagnosed my 9 month old baby girl with tonic seizures ...but i want to know does it go away?they put her on keppra and it has helped she was having up 14 seizures a day that would last about 30 seconds ...today she had none but yesterday she had 7 so i dont know....
Caryn - posted on 07/28/2009
Hi! I am new here and have enjoyed reading everyones post. I have a two year old little girl who suffers from atonic seizures, or drop seizures. She suffered a grand mal at two days old, had absent seizures there after and now only has atonic. They are getting to be dangerous as she loses all tone and completely collapses. She is also visually impaired and very developmentally delayed. I was wondering if there is anyone else there in the same/similar boat.
Kimberly - posted on 07/20/2009
My boy Wrylee has major epilepsy and has seizures on a daily basis some weeks...I am feeling very alone with this and not feeling like i am coping very well at the moment ...He is 4yrs and has other problems too I am struggling with all this pre seizure behaviour ... He has 3 different types he has absent seizures a tonial seizures and tonic clonic I guess i am just trying to make contact with others who deal with this too just so i can talk about it with others that know how it feels .... Cheers Kim
Vicki - posted on 07/19/2009
Tonic and tonic-clonic are TWO DIFFERENT THINGS!! Tonic clonic otherwise known as grand mal...and tonic where the child stiffens only, nio clonic movement...both are seizures but look totally different. Our little guy has tonic seizures!!!! No clonic movement!! They are one form of generalized seizure. meaning the entire brain missfires, n=he also has absence seizures and myoclonic seizures, atonic too, where he falls and busts his pretty little head, and wears a helmet to protect his brain!!
Vicki - posted on 07/19/2009
Yes. Our little guy, /Hayes has tonic seizures. He has epilepsy and tonic seizures are one kind of seizures that he has. He straightens out...called tonic. He is a delightful child!! What are you going through?
Sabine - posted on 07/19/2009
both my sons had tonic seizures after birth, beginning when they were about 3-5 days old. They both were on Phenobarbital for 2 years before we weaned them off. Philipp, our older one, was seizure free until 8th grade - we were told, that it might start over again, once he hits puberty, and so it did...he has been on Keppra now for 3 years, and we're trying to wean him off again, since there was no seizure under medication for more than two years now. Niclas, our younger one, is seizure free for 5 years now.
I can see your fear about people not recognizing a seizure, or not taking the right action, but on the other hand you need to learn to trust other people as well. Check out a few daycare center or private daycare, and go by your sense - if you don't feel comfortable, find another one. Daycare staff usually is trained in CPR and First Aid, and knows what to do, but you need to feel good about them as well.
Good luck with your little one - I hope it was only a reaction to your meds, and he's good now.
Tracey - posted on 02/11/2009
Again I don't mean any disrespect. And I don't believe you would purposely give false information on something as serious as this. But there has been a huge misunderstanding about seizures and/or Epilepsy and the conditions surrounding these circumstances for years. In order to change this, people have to be getting the correct information. And that's not always the case. I know that Amber's concern for her son is that, should he have a seizure after he is put into day care, are they going to know how to tend to his needs? If they should ever have to call an ambulance for Gavin and the people around him tell emergency services; Oh, from what I could see he had a grand mal (tonic clonic) seizure. Then, this could cause problems for Gavin medically. Because, if there are no convulsions involved, like his past seizures then the type of seizure has been misinterpreted by one person saying they saw something in fact they did not. To date there are well over 40 known types of seizures. I have personally been experiencing uncontrolled complex partial and grand mal (tonic clonic) seizures for 14 years. I know what it' like to chew the skin off the inside of my mouth, not be able to eat because I bit the end of my tongue, and barely be able to walk for days because of sore muscles, etc. And in the past, approximately, 10 years mine have been nocturnal. I also have two family members who, prior to my own diagnosis, have Epilepsy. One, chose to take there own life several years ago. I've spent the last 12 years working with my local Epilepsy Organization. Between what I've learned personally and over the years with the Organization and through the professionals in the field I trust I am doing a service to those who may be struggling and need help.
Jessica - posted on 02/10/2009
I found this information and thought it would clarify exactly what I mentioned before.
This is a definition of a Tonic Clonic Seizure but it will explain the phase of tonic and then clonic and you will see the difference.
This type is what most people think of when they hear the word "seizure." An older term for them is "grand mal." As implied by the name, they combine the characteristics of tonic seizures and clonic seizures. The tonic phase comes first: All the muscles stiffen. Air being forced past the vocal cords causes a cry or groan. The person loses consciousness and falls to the floor. The tongue or cheek may be bitten, so bloody saliva may come from the mouth. The person may turn a bit blue in the face. After the tonic phase comes the clonic phase: The arms and usually the legs begin to jerk rapidly and rhythmically, bending and relaxing at the elbows, hips, and knees. After a few minutes, the jerking slows and stops. Bladder or bowel control sometimes is lost as the body relaxes. Consciousness returns slowly, and the person may be drowsy, confused, agitated, or depressed.
I don't want anyone to think I would give false information. If I don't have the information for you I will help you look it up. So if you have any question just ask
Tracey - posted on 02/10/2009
I don't mean any disrespect to anyones knowledge about seizures but, I want to make a clarification on Jessica's comment that tonic seizures & tonic clonic seizures are basically the same. This statement is NOT TRUE. They are listed as being two completely different types of seizures for the following reasons: With "Tonic Seizures" there is often a stiffening of the body but, as commented, the person does not go into convulsions. This type of seizure will average under a minute. Also with tonic seizures consciousness is often preserved & they will often happen during sleep. With "Tonic Clonic Seizures" a person will lose consciousness, the body stiffens & convulsions occur, often involving the entire body for an average of 1 to 3 minutes. There are variables with all seizures for many reasons - individual chemistry, age, gender, levels & combinations of medications, etc. but watching every detail before, during, and after will help your specialist be able to tell the difference from one type of seizure to another. This can be detrimental in making a proper diagnosis. If you are interested & have more questions, you're welcome to contact me personally at my new Community Site-Epilepsy Awareness 2009. Or, please, feel free to check out the Epilepsy Huron Perth Website at www.epilepsyhpb.ca Best of Luck!
Jessica - posted on 02/07/2009
Hi my daughter has had two tonic clonic seizures and I have done alot of researching and have learned that a tonic seizure is basically the same without the convusions. I bet those can be very scary also. If you have any questions just ask!
Tracey - posted on 02/06/2009
Hi again Amber: I know dealing with a loved one having a seizure for the first time or, all the time, can be terrifying. But I won't pretend to know how it feels going through it with a newborn. If the cause of your baby's seizures was from a chemical reaction, as suspected, then phenobarbitol was necessary to stop the seizures. And phenobarbitol has been on the market forever. Unfortunately, any medication given to control seizure activity can have a number of various side effects. It's a good possibility this is why you were noticing Gavin's mood swings and difficulty with sleep. And when someone is ready to be taken off of an anti convulsant it is necessary to do so, slowly. This allows chemical levels in the body to adjust accordingly, so as not to induce more seizures. It sounds like things are headed in a more positive direction for you and your family now. And I hope your experience with this is now over. Best of luck in the future, Tracey Alderson
Amber - posted on 02/06/2009
No he did not have a tonic clonic seizure. He had a seizure that me neonatoligist refered to as tonic where he stiffens his arms and arches his back. Gavin had four of them within six hours after birth. When he had the fourth one they started him on phenobarbital. We then went to Children's Hospital to see a neonatologist where she gave us the diagnosis of tonic seizures. She said that she thought it was due to some of the medication that I was on while Gavin was in urtero. I am on Effexor XR for bipolar depression and was given a shot of morphine 24 hours before Gavin's birth due to extreme pain from pubic shear. She gave me instruction to wean Gavin off of the pheno slowly over a month period. This was extremely hard on Gavin and my fiance and I. Gavin was extremlely irritable and would cry for hours on end. He also had a terrible time getting to sleep while being weaned off. He was really bad for probobaly 6 weeks, and then progrssively started to calm down. I am now glad to report that he has been off of the pheno for almost 10 weeks and there are no seizures to report. But they could pop up at any time. I just have to keep an eye on him. I am currently home from work on a leave of absence to watch him carefully to make sure hes not seizing again. I'm kind of scared to put him in daycare. What if he has a seizure and they are unaware? Will it go untreated? I know that being off the meds for this long without a re-occurance is a very good sign, but it still worries me. I just wanted to know if anyone else had a child who had the same experience that my son did or the same diagnosis?
Thanks for responding,
Tracey - posted on 02/06/2009
Hi Amber, my name is Tracey and I am very familiar with seizures. I don't have a child with seizures but I have Epilepsy. More simply put, I have a seizure disorder. I also have dealt with family who have had seizures. And I've been working with my local Epilepsy Organization for over 10 years. If you are refering to tonic clonic seizures, this is the newer name for a grand mal seizure. Does your child have convulsions during these seizures?