seizures

Atinuke Eunice - posted on 11/09/2009

Quoting Jennifer:

seizures

My 2 year old son has just been diagnosed with Partial or Focal seizures. We have no epilepsy in our family, so I have not the slightest idea of what's to come with this. If anyone can share a story or give me some advice I would greatly appreciate it.

do not worry jenny, with strict adherence to doctors instructions, it will be a thing of the past, you dont need to have an history of epilepsy before having seizures, something trigger it off from the brain. 

Dee - posted on 10/29/2009

Jennifer,



My name is Dee and I have epilepsy and I lead a normal life. It is sometime scary to people around the patient but it is a chance to educate people who are in his everyday life. The most important thing is to stay on meds, find out what are triggers, strobbing lights, stressers, ect, there are many things that can trigger a seizures. Seizures can be caused by a bump on the head or several different reasons. I know from statistics that some children out grow seizures, my onset of seizures did not begin until age 22 and I had no neurological history in my family either. I’ll keep your family in my prayers and you may check with your physicians for a support group.

Lisa - posted on 10/25/2009

Quoting Jennifer:

seizures

My 2 year old son has just been diagnosed with Partial or Focal seizures. We have no epilepsy in our family, so I have not the slightest idea of what's to come with this. If anyone can share a story or give me some advice I would greatly appreciate it.

Hi Jennifer,

My son was diagnosed with generalized absence seizures 3 years ago.  We don't have epilepsy in our family either, or so we thought.  After a lot of research, we found out that some of our distant, very distant, cousins had them.  Weird.  After the neurosurgens tried 3 different kinds of medications,  they wanted him to go through Vagal Nerve Surgery Therapy or VNS Therapy.  Then they told us if it didn't work he would have to have brain surgery.  We didn't want to go through all of that until we knew we had tried everything else out there first.  We ended up going to a pediatric epiologist.  We had to go through many different kinds of medications and many different doses of each medication.  It was a quite a challenge.  2 years ago, our son was on Depakote ER.  The doctor had our son get his blood checked and we found out that our son was allergic to it.  His platelets and white blood cell count went down considerably.  The doctor pulled him off it and put him on something else.  Now our son takes a very high dose of Keppra, but it seem to work for him.  He has been seizure free for one year now.  You might check out your local epilepsy foundation.  I know where I live they really helped by just listening and giving me a lot of information.  I never went to any of the support groups, but I did get a lot of informational brochurs and books.  Also, just so you know there is a national walk in March in Washington D.C.  Our local foundation also has a walk in our area.  My biggest advice talk to everyone you know about it.  Your friends, family even aquaintances will be happy to help.  I found out a lot of information about different doctors, meds and types of epilepsy doing this.  Stay strong girl,  you and your family will  get through it. 

Teresa - posted on 10/25/2009

Hi Jennifer, My names is Teresa, and my 5 year old daughter had her first and only seizure about three weeks ago.Her EEG was normal, we are still waiting for the results of her MRI. Her's lasted only about 15 seconds, but her arms clenched, eyes rolled back in her head and she urinated.. Very scary.. but working with kids with disabilities at least helped me identify what was going on. Hopefully the neurologist can get your son's under control.. good luck...

Natalie - posted on 10/24/2009

My brother in law has seizures(due to a hit in the head when he was younger, got in a fist fight) , and I am not sure about seizures, but, I know when it comes to children, that you will be in my thoughts and that I hope that all works out. Good luck! Natalie

Melany - posted on 10/23/2009

My husband had his first seizure at 2 months he was diagnosed with epilepsy at the age of four. He has had two brain surgery's the first one at 13 the second at 23. the surgery's took care of his seizures for a while but due 2 the fact part of his scar tissue caused by seizure activity is on the part of his brain that controls speech they slowly came back cause they could not remove that part of his brain without him losing his ability 2 talk, we r now looking into another form of surgery that is called VNS therapy where they will implant a little box by his collar bone that will stop the seizures before they start by sending a shock 2 the brain. We have found that some ways 2 help prevent his seizures is 2 make sure he gets proper sleep, a good eating schedule, and preventing as much stress as possible cause when he is really stressed out it seems 2 make things worse. So if you see that ur little one is getting really frustrated you may want 2 make sure u try calming him down and comforting him. I have also found that while my husband is in a seizure if i rub his back and stay calm and just comfort him he comes out of them a lot faster. I really want 2 stress that you make sure not 2 be 2 protective i know he ur little one and u want 2 protect him in every way you can but the best thing you can do is let him live his life like every other little kid. My husbands mother made the mistake of being 2 protective which i kno she just wanted 2 protect him but in the long run it just caused him 2 be scared 2 do anything and the fear would cause him 2 have a seizure cause she wouldn't let him do things cause she would say he might seize but by putting that in his head he would dwell on that and put himself into one. Another thing make sure ur child know that he can come 2 u and tell u when hes had a rough day or talk about his seizure but for him 2 be able 2 do this u need 2 make sure u stay calm with no matter what he is telling u because back 2 my husbands case instead of staying calm his mother would freak out so he got 2 where he was scared 2 tell her if he had a seizure or anything and it would all bottle up causing him a lot of stress which would lead 2 seizures. Also by having a open communication it will help when it comes 2 explaining things 2 the doctors so that they can find the best treatment. I hope this helps you good luck and if u have any more questions feel free 2 ask.

Stephanie - posted on 10/23/2009

My son Bridger, 11, is hydrocephalic (water on the brain) and started having partial complex epileptic seizures a little over 3 years ago. His seizures are related to scar tissue in his brain from a shut placed when he was younger. We have a lot of other issues related to his shunt and developmental delay but dealing with the seizures has been the most complex. We have tried several different medications and he is currently taking one that seems to be holding him fairly well. Being a ER nurse, I know that it is very important to keep track of his medications and medical history. If you can, type up a list with phone numbers and addresses of mom/dad/family (if he goes to daycare or preschool), his medications, prior hospitalizations and surgeries, doctors (and their numbers) and the therapies that he receives. This can be very helpful if you need to call 911 or go to the ER because you can hand them a copy of this and it will have much of the information on it that they will ask for. He caries a backpack with him at all times that has his emergency meds and a folder with his medical history. Make sure that you find a doctor that you trust and that you feels listens to you! It is so important that they listen because you know your child best and if your "gut" tells you something, LISTEN! Moms know their kids. Also, epilepsy.org is a wonderful resource as well. I know how hard and frustrating this can be. Most of all, remember to let him be a kid.....it will help you both. Best wishes :)

Jenny - posted on 10/23/2009

I was diagnosed at 15 with petty mal epilepsy. No one in my Family has ever had it so it was a wonder where I got it from. I have a 13 year old son that one day out of the blue had a grand mal at school. It was a shocking phone call but it was a wonder if he'd get it cause of me. They say it is only 5% hereditary. Watching the seizure and the aftermath is VERY scary when it is your own child. I missed the 1 and 3 seizure but witnessed the 2nd one where he fell to the ground and smacked his head hard.

Once they start you with meds there is still a chance of a seizure till the right dose is in your system. Meds work great as long as no dose is missed.

My son missed two pills this week and was watching a movie in the auditorium in the dark and had another seizure. I'm trying to learn to not be so smothering to him. I feel better when he is with me so I can watch him but he is 13 yrs old. Good luck to you and your son. Everything will work out...

Jennifer - posted on 10/23/2009

Thank you so much for your post. I have noticed that spinning and heat/direct sun triggers my son's. He is on meds now as they were occurin g 1xwk. He's has improved tremendously. I love him dearly! Again that you and it was a pleaseure meeting you.

Catherine - posted on 10/22/2009

I developed epilepsy at 13 after falling and hitting my head. I have grand mal seizures, but I control them with a low dosage of medication, and have done so for more than 32 years. My life is a normal one. Seizures are not a death sentence, and many grow out of them.

Jessica - posted on 10/22/2009

Hello, my step mother is epileptic (having 1-5 seizures daily) and so is my son (he had a stroke at 4mo- another story). Seizures are not as scary as they look, just remain calm and each will end. Sometimes the after effect can be scary as well as they seem really out of it, but it is like every part of their body, brain included has gone through a marathon. I have hope my son will outgrow his seizures( he is 3yo), but if not, my stepmom helped prepare me and I feel I can face it and you can too. Sometimes talking and light stroking on a cheek can help end seizures faster, my dad tested it out on my stepmom.:)

Jessica - posted on 10/22/2009

Seizures are one of the scariest things u can watch ur child have.. its somethign u cant seem to control.. my son had seizures at 1 yrs old, where he was hospitalized, and hen again he was having them at 3 yrs old and again was hospitalized. They said they were fever seizures but he never had fevers UNTIL he had the seizure.. after the seizure he would burn up so bad he would get blisters on his lips =( the said he would grow out of this.. and at 5 ( since it seemed 2 happen every other year.. he did not get them.. they also said by 5he would grw out of them.. he is now about 2 be 6. We are doing good. Knock on wood neither of us will ever have to go thru that again. I never really understood wut trigger them.. the 2 times he did have the seizures.. once he became over heaed from sleeping in a much too warm bedroom in the winter.. and the next time he was out in the snow in his snow suit and we had come in and he was just rosie checked but not extra warm and we were layed on the couch watchin a movie.. everything was fine and then he started jerking.. i was like hey stop kicking me.. then saw that fixed look.. and freaked out!! 911!!! but yes things are fine now!!! soo they do seem to "GROW" out of them.. good luck to all theother moms.. hopefully u will have the same "luck" as me. =)

Donna - posted on 10/22/2009

My grandson had a stroke a birth. We only found out after he started having seizures about 30hrs after he was born. It was a long hard birth (47hrs) they finally did a c-section.His stroke was very small and did not show up on the CT scan but it did show on the MRI and 10 days later it was very visable on the 2nd MRI.He is on phenobarbital(sp)and doing very well..no more seizures(knock on wood) and hopefully we can keep it that way. I would suggest that you request and MRI for him, if you haven't done so already. The sooner the better. Kids are very resilient and can overcome a lot, they are pretty amazing!

Sapphire - posted on 10/22/2009

I am sorry your son is having seizures. My 3 year old lab has violent cluster seizures, and I would never compare a human to a dog, but I have learned a lot over the past 2 years. 1) Most importantly-make certain your son is wearing a Medic Alert bracelet or necklace. I know it will be hard to keep this on a little one, but it is really important that in the event of an emergency, health care professionals know he is prone to seizuers. 2) Start keeping a seizure log-like someone else mentioned. Document the date and time of the seizure, and the duration of the episode. Document the recovery time. For example, my dog Hercules might have a 2 minute seizure, followed by a 15 minute post-ictal recovery time which is sometimes more heart-breaking than the actual seizure. Then go into more seizures. Also document possible triggers: a new food, an illness, new medication, new laundry detergent-anything that might seem different or out of routine. I document my log on the calendar, then transfer everything to a Word document. I can easily type it up and fax it to the vet's office to be placed in his main file. Hercules is currently on phenobarbital & potassium bromide. Again, I can't compare humasn to canines, but the way I document his seizures have been very helpful to the vet's office.



All the best to you!

Amy - posted on 10/22/2009

I am sorry to hear this. My husband has 12 different types of seizure. They can not put a name to it because there is so many types he has and could be more. He also has blood clots, as well as mini strokes. He can not work. It is very helpless when someone you love is having a seizure. I have watched my husband a few times and it is not pleasant He had a bad child birth and that is what caused it. Not enough ozygen to the brain and some of his brain is burned out. The doctors told his parents he woyld be a vegtable.If you ever need to talk just email me. I am here for you. Have a great night. PS. I went to Overbrook School for the Blind in Philadelphia PA. I have seen other children have seuzures.

Donna - posted on 10/22/2009

SORRY BOUT THE SPELLING Just wanted to add have 2 dogs. 1 took epilepsy as a puppy and the other took it 3 weeks ago aged 7!!! How lucky/unlucky is that lol

Donna - posted on 10/22/2009

Hi Jennifer-I have 2 grown children both took epilepsy at puberty. My sons was quite quickly controled as he took grande mall. My daughter however suffers from Myclonic epilepsy which sets the body in2 spasm. She is concious and has these everyday. She now also suffers grande mall and abenth seizures. Always be 1 step ahead-my son, now 24 told me that he was like a moth drawn to a flame couldn't take his eyes away. You can buy a screen at argos that fits over the tv which filters the frequence. Computers are better than tv's becoz of the frequence. You usually can tell by the mood if a seizure is on its way-very crabby/arsey for want of a etter word. We were told it doesn't have to run i the family it just takes something simple to set it off-high temperature, bang on head, a shock. Specialist told us that if they had taken it in infancy there is a good chance they grow out of it. Don't panic-let him have a full fun life. Just make nursery/school etc football coach aware. My son always said no matter what injuries he was left with the worst he really felt was tired and sick. We suffer more coz we have to watch it helplessly-lol. After a seizure as young as your son is ask him simple questions like who you are and teddy's name. If he answers ok let him sleep for 30 mins then wake and talk to him again. If confused then take him to hospital.It will come natural to you just stay calm-oh and dont let him play on it. As young as he is he will soon get the idea. My daughter is 22 and lives alone-you cope you are a MUM xx

Becky - posted on 10/22/2009

I have been working with children with seizures for a while now and there is really no rhyme or reason to what children have seizures and why. Keeping a log is a good way to help determine what is causing the seizures. Has the Dr. been able to determine a cause? Does your son have tumors? Some other type if neurological issue? Some kids have seizures and no one knows why. That is the worst. At least if you know why you can work to make them stop or get them under control. There a bunch of things the Drs. can try to make the seizures go away or happen less often. I would suggest you find a good neurologist and visit with him or her regularly. The Dr. will be able to help you decide where to go next. Aside from medications (which can have side effects that do more damage than the seizures) there are therapies available to help get the seizures under control as well as a special diet that has been shown to be helpful to some children. There are many other options as well, but you need to discuss them all with your Dr. If I were you I would find a neurologist and keep a daily log- list the date, what time the seizure begins, how long it lasts, what your son was doing at the time the seizure occured, and what you did while the seizure was happening. Always remember that a seizure over 5 minutes is unsafe and you should seek medical help. If you are not already CPR and First Aid certified- you may want to get that. If you do not want to become certified you can take classes for around $25 that do not certify you but teach you the basics. Good luck to you. You and your son are in my prayers.

Erin - posted on 10/22/2009

I had seizures when I was little as well. My first was on the way home from the hospital! I'm 26 now, and at that time, the doctors prescribed phenobarbital (not sure on the spelling). They told my mom that I had them because of a short in some connection in my brain. Anyway, I ended up "growing out of it" and haven't had a seizure since I was 2. I hope this is the case for you!! I have had no developmental problems from the seizures, as I was actually in advanced classes growing up! Good luck hun!

Samantha - posted on 10/22/2009

Hi Jennifer my name is Sam, our daughter is almost 3. She has had some seizures also some with temp some not has your son had a MRI or EEG Taylor's are normal her seizures last aprox 30min. I have found a web site www.epilesy.org.au they have sent me info pack and a phone No you can call to talk to someone hope they can help.

I have been told that they grow out of it by the age of 6 goodluck

Teressa - posted on 10/21/2009

Hi Jennifer my name is Teressa, I work with people who have seizures frequently. When we first start noticing their seizures we look around and try to find the trigger for the seizure, it could be a flashing light or a banging noise, and we keep a log of every time they have a seizure so we can become more aware of what the main triggers are, then we take this log to the doctor with us, so he can see what is going on and can prescribe their meds accordingly, I really hope this helps you! best of luck to you and your son!