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son newly diagnosed with Absence Seizures
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I am new to this forum. My 5 year old son was diagnosed two months ago with Absence Seizures. I have been assured this is a classic case. He is perfectly "normal" in every other way. There is no known epilepsy in our family. I have been told there is a 99.9% chance he will grow out of this in a couple of years. We are currently on Zarontin. I only ever saw about 10 per day. Went down to about 2-4 per day and he caught a virus this past weekend. I know he is tired but I am seeing a lot more of them in the last couple days. Dr. increased his med and he will go for bloodwork next week. They are very brief but a lot in a short period of time. I can't seem to find anyone with a similar situation. I know a lot of people have Absence seizures but tend to have other seizures as well. Can anyone give me some advice?? How long should it take to gain control of these seizures??
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My daughter was diagnosed EXACTLY the same this past August, no family history, I can remember the doctor saying the words "text book" absent siezure, and thinking it's not text book to US!! Zarontin was the first drug that we tried too. Her stomach couldn't handle that one, it did seem to work for the seizures, but she ended up on Prevacid daily and Tums hourly, we had to way the side effects against the results. We are now on Depakote, and the doses kept going up because the seizure would continue to return, her hair started to break and fall out a much higher rate that I could handle, not to mention the personality changes and mood swings. So now we are working to get off this one and are heading back tot he Neuro on Wed. this week.
We find too that she has to get her sleep, eat regular meals, keep life in a routine, and any illness adds to the daily seizure totals. I think I also finding that if she is nervous or stressed out they increase. I would love to keep in touch with you because it sounds like we are pretty much in the same stage in this situation, feel free to contact me at mdavid2@twcny.rr.com. Missi
My 7yo daughter was diagnosed 3 weeks ago -absence only, no family history. We are still trying to come to grips with all this. Some questions I have are --When you say that a break in routine or lack of sleep can trigger seizures - Is this with complete control otherwise? What I mean is that when people say they are seizure free does this generally mean a seizure won't be triggered by these circumstances or are seizures still triggered by hyperventalting (sp?) or lack of sleep even when a child is otherwise seizure free. Also, how long will it be before we know if a medication is or isn't going to work. My daughter has been on Zarontin for 9 days now - this is only the 3rd day at the 5ml 2X a day dose that we were working up to . Should it take days or weeks to work, or should the results be more immediate?
Thanks.
I answered your questions on another post as well. You sound just like me " What I mean is that when people say they are seizure free does this generally mean a seizure won't be triggered by these circumstances or are seizures still triggered by hyperventalting (sp?) or lack of sleep even when a child is otherwise seizure free" I asked my neurologist the same question. If they truly become seizure free, I don't think any of these things will trigger seizures however, while getting to this point, you need to be aware of the triggers for your child. My son was diagnosed in Jan. so it has only been about 5 months for me but we are still trying to find the right med and right dosage. Everyone will tell you - it takes time and patience. I am getting better but it really stinks. You want your child to be helped right away. I find I put the rest of my life on hold while trying to get thru this. Just try to take one day at a time and don't rush the med increase. Increasing slowly can help with any side effects. Some people have success right away with the first med - I wish you good luck!
Hello there, I am a young adult (19) who has had absance to generalized seizures for over 13 years and when I was younger they had me on Zaronitn too and said that I would grow out of it - apparently I was born with Epilepsy but I don't know where it came from since I am adopted - anyway, have hope, I know that things can and will work out. I have dealt with them for a long time and if treated correctly your son will have a seemingly "normal" life. Just for info, I was also on Zonegram and now I am on Depekote - if you have any further questions feel free to ask! hollywx07@yahoo.com (put epilepsy.com in the subject heading)
My daughter was diagnosed last May with absence seizures. This is the only thing that she has. I understand the feelings of watching them space out for several seconds. She would do it about 20 + times a day.
These are a few things I noticed. If she didn't get enough rest she would have more, if she was hungry she would have more, if she was laughing for an extended period of time more, when we would go to the amusement park before and after every ride she would have one. It was extremely disheartening to watch all of this day after day.
Her Neuro put her on Lamictal and from the first dosage we could see a decrease. By the time she was at her full dosage they were gone. If you have any questions please email me. joi_128@msn.com
Almost to the day my son was diagnosed with classic absence seizures a year ago. After four meds and 11 months we found the med that helped us. That med is ZARONTIN. Took awhile to find his right dosage but he has been seizure free since Jan 15,2008. Tyler is now 7 years old. The only side effects we have seen is Tyler is sleepy more in the afternoon and if he doesn't have food on his stomache when he takes his meds he gets a small tummy ache. Let me jknow ifyou have any questions..I would love to answer any you have!!
I'm in a similar situation. I got diagnosed with epilepsy when I was 10. I only had absence seizures and the doctors assured me I would grow out of it. I didn't know there was a 99.9% chance of growing out of it though. I got off of meds when I was 15, but my seizures returned when I was 19.
That morning I had about 30 absence seizures in a row. They lasted about 5-10 seconds and as soon as I finished one, another one came on. After deciding to go to class before calling the neuro, I returned home but didn't make it because I had a seizure and blacked out. The paramedics told me I had a seizure and I just said "Oh, okay." I believe that this was a tonic-clonic though and not an absence one. It looks like I'm on to new seizures, but since your son only has absence, the chances look good at outgrowing it.
I hope your son outgrows it. It looks like a good chance that he will.
MY DAUGHTER HAS MYOCLONIC, TONIC CLONIC, FREBILE CONVULTIONS AND BLANK FITS. AND I DONT KNOW WHAT CAUSES IT, SHES HAD IT SINCE 3 MONTHS OLD AND SHES 5 NEXT WEEK , SHE HAD A BLANK FIT THE OTHER DAY AND STARTED GETTING PAINS DOWN 1 SIDE OF HER CHEEK.
My daughter's medical past is long, and complicated, but one of her conditions is epilepsy. We have been surviving it for almost 9 years, and is a result of a stroke she suffered, when she was 11 weeks old. After being put on tegretol, and seizure free for about a year, she began having simple partial, absence seizures called infantile spasms. Like your son's, hers only lasted a few seconds, and were so slight that at first I was the only one who could catch her having one. They too came in "clusters" where there was one there were always more soon to follow. They put her on a new med, which after adjusting it multiple times, remained unsuccessful. Her neurologist then put us on a combination, which strengthens the effectiveness. There are a couple of traits that are very typical of epilepsy, and one of the biggest ones to keep in mind is,that when their immune systems are down,and especially when running a fever, their seizure threshold is lowered (they are more succeptable to having seizures.) Most neurolgists will typically keep the kids on their meds for about 1-2 years after being seizure free. And, as long as there is no underlying neurological problems, most kids will outgrow epilepsy. As their brains grow,and reach full maturation they are less likely to have seizures. But, realistically you need to know that you can be seizure free for many years and out of the blue one can occur. But, stay optomistic, and be your son's advocate, be observant. The more information you can give to your neurolgist, will benefit your son, and his treatment. I have had a lot of experience with multiple types of seizures over the years, and have done a lot of research, so please if you have any questions, ask. Even though our children's epilepsy is very different in many ways, I can relate to how you are feeling right now, the beginning is so tough. The vast amount of emotions you experience all at once, questions with seemingly no answers, and the helpless feeling that can sometimes overcome, not being able to just "fix" it for your child. Believe me, I've been there, and I understand. Let me know if you need anything! Meggie
My daughter was diagnosed with Absence seizures at the age of 5. We were told that once medication was started, 95% of children are controlled. It took us almost 4 years to finally control Jessie. After trying numerous medications, we stopped trying and kept her on Epival and Zarontin as they seemed to work the best. Before medication, Jess was having over 100 absence seizures a day. We had no clue why, no one in our family have epilepsy. We were very concerned. When they first began, they were short and she would come out of one and continue playing. After a couple of weeks of noticing this, they continued to get worse. Jess's eyes would roll back and more oftern than not she would pee in her pants. She also would occasionaly rub her fingers together and hum. Most of these symptoms stopped once the epival and Zarontin were introduced but the absence's continued and were down to about 75 a day. School was becoming very difficult for her. After numerous trips to the hospital, we were approached by Doctors and asked if we would try the Ketogenic Diet. After a lot of thought, we decided, along with Jess to give it a try. Very Very difficult. Probably the hardest thing I have ever done in my life. How could I do this to my child??? Our goal was for her to be seizure free. My daughter was amazing. She was a champ on this diet and did everything to please us. However after 10 months on the diet, we had to stop as it was making her quite sick. She was vomiting after most meals, cholestoral was going up and her blood pressure was a bit high. We were nervous to stop the diet because we were scared the seizures would come back. After 10 months on the most bizarre and strict diet I have ever seen, we were actually scared to stop!!!! Something strange happened, more of a little miracle for Jess I think.....once the diet was gradually stopped, the seizures completely stopped!!! No one can explain it.....which is fine with us. She is now 9 (almost 10) and is medicated only with Epilval and Zarontin and they are finally controlled. She is a differerent little girl now. Back to normal!! I am afraid everyday that the seizures will return. I think of it all the time. Is there anyone out there that have been controlled and then the seizures returned. I was also told that the chances of her epilepsy going away at adolecense was slim because of the time it took for her to be controlled. I wonder what the future holds all the time and wish someone had an answer for me. I gues only time will tell. Anyone with a similar story?? I would love to hear all about them.
I'm not sure how this works but I am hoping I am replying to Meggie. Thanks for your words of wisdom. I feel like most people that have epilepsy have multiple problems and don't feel that their situation is similar enough to mine to write back. I seem to be dealing with a much smaller problem than many of you. However, I can't find anyone with just the absence seizures. I am just curious if you have found any food triggers for your child. I can't seem to find a lot of information on this. I would do anything to help my child get thru this and I know it is such a waiting game.
I forgot to mention, as far as triggers, of any kind, try to look at trends...if you notice more seizures, try to see if you can find any similarities..Do you think a certain food may be a trigger for your son? I also have a couple questions...has your neurologist ordered any testing? EEG, MRI, etc...and also, there are two types of absence seizures, "typical, and atypical" do you know which one your son has? If you're unsure we can understand more by the duration of seizure, and other symptoms as well...I hope I'm not being too intrusive. Meggie
Epilepsy is one of the most complicated and unpredictable disorders. We were all made to be different, no two people on this earth are exactly the same. And, when you're dealing with medical issues no two cases will ever be the same. There are many different types of seizures that can occur, and even though patients share the same diagnosis, they will never match up. Over the years, the medical advances have drastically improved, and will continue to get better and better. But, there's so much that is not understood, because of how complex the brain is. Frustration, and helplessness, are understatements, when describing your feelings as a parent. You can only do so much, but trust me, it will never be enough. We, as mothers, want to make everything all better, for our children. If you think back before your son had any seizures, when he had the flu, or an ear infection, even a really bad cold...all you can do is, take them to the doctor, give them medicine, or certain foods/drinks, and comfort them...but, then you have to sit back, and let it run it's course. Remember how helpless you felt then, because as a mother you can't stand to see your child hurting in any way. All you want to do is fix it, andmake it all better, even when you can't. That's why even though no two stories will ever match up exactly, there is one common thing that we all share, no matter what the severity may be...feelings of helplessness..As parents, we have no control, and if we did, we would make it go away. We do what's best for them, no matter how hard it may be...so, we are all very much the same. Trust me, over the years, I have a lot more insight than I had in the beginning, but even so, I still have the same wrenching feeling in the pit of my stomach...because I can't fix it for her. But, going through all of this, will only make us stronger. Remember, God will never give us more than we can handle..Never, no matter how desperate the situation may seem. But, one thing that really gives me comfort is knowing that, even though I am not in control, He is. He knows the way, because He is the one who layed out the path before us...He has the master plan for our children, and it may not seem like it, but His plan is perfect. Just have faith, and we will never be led astray. Trust in him, trust in yourself, and trust that your child is in good hands. I hope you have a good neurologist, most of them are...but, no matter what, if you are ever dissatisfied with your son's care..speak up...your maternal instincts are there for a reason. It may take me a little while to respond, but I'll check as often as I can...If you have any questions, or just need someone to vent to...I'm only a click away...I understand how difficult this is for you..i've been there. Meggie