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jolieweng

Grow out of seizures???

Topic: 

Hey, have you other parents out there heard that your child could grow out of their seizure disorder? My Zakry has idiopathic epi, so does that mean that he should be able to grow out of it? We are running one more metabolic test, but that's just to be safe (we thought he had MSUD). Has anyone else heard this? Has anyone else had an experience where someone "grew out of it?" Just looking for the positive!

Comments

Re: Grow out of seizures???

hi im brittany im 11 years old i have had seziures since i was 5 i REALLY wanna grow out of it i really really do. when i tell some people they make fun of me and treat me different and i cant spend the night at anyone houses only if their parents are a docter or in the medical field i really really wanna go out of it :_(

Re: Grow out of seizures???

My daughter was dx with seizures when she was 15 months old, then at age 4, she was dx with idiopathic generalized seizures. She has been on many different meds, different dosages, and for about 2 yrs, she had none, then she went through a growth and high metabolism stage, the seizures begin to get worse, now she is turing ten next month, and well the seizures seem to be changing, they were really bad for a while, and now they are getting smaller, and coming less often. Her father and I both had seizures as children, and once we reached our pre-teens, we out grew them, it is hereditary for us, its in our blood lines as far as we can trace back, but I think, and I pray, my daughter is finally out growing hers. My father said that mine got worse before they got better, and then they came shorter and less often in between until they finally stopped all together. So hopefully this is what's happening to her. The doctors were we are located are not the most careing one's, so we try to keep our hopes up, and not put too much stock into the doctor we have, I just wish there was a neuro dr that cared that we could talk to aboutmy little girl!

Re: Grow out of seizures???

I had seizures when i was about 5 or 6,i outgrew them when i was about 11 or 12.I was so happy when i didnt have them anymore.Thats the good news,there is some bad news to it too.You might get them back at any point in your life,i got mine back when i got pregnant with my first kid and now i cant get rid of them.I have had them for about 17 years now and they cant fix it unless i do the surgery which i dont trust cause i dont want my kids taking care of me rest of my life so soon.I hope you child outgrows them and they dont come back,good luck to you.

Re: Grow out of seizures???

When I was age 3, I believe it was, I had a horrible seizure that I cannot remember, but my sister told me that i had sat up and was almost blue and gurgling in bed, she tried to give me a drink of water because she was little and she was scared and didn't know what to do, my parents had left her alone with me. Nobody knows what happened after that, she never admitted it because she felt so terrible, but obviously I'm fine. A few months later I have a horrible seizure where I stop breathing and my 10 year old brother has to call 911...the seizure was 30minutes+ before i came to, but I was still sleeping. The thing was, that I only had seizures when I was coming out of a sleep or going into. I had like 7 seizures in 2 years, 1 brought on by spinning rides at an amusement park. Point is, when I was 5, i stopped having them except a few little nervous jolts when I got a little older, say 11. I never took any medications, because the doctors said my seizures might have been stress and sleep related.

I don't know what they diagnosed me, but stay strong, everything will be fine. (:

Re: Grow out of seizures???

My daughter is 6 years old and has had complex partial seizures since she was 2. She too was diagnosed with idiopathic seizures. We were also told that she would most likely outgrow them. She has had a very hard time getting controlled seizures. She has been hospitalized twice in the last 12 months spending over 6 weeks in the hospital due to uncontrolled seizures. The last time she was hospitalized she was having over 100 seizures in a 24 hour period. I asked the Neuro what her chances were still of outgrowing her seizures. He told me that because her seizures were idiopathic meaning that there was no visible cause for her seizures that she still stood a chance of outgrowing them HOWEVER, he said if we can never gain control of her seizures she will never outgrow them. He told me that in order to outgrow them they have to be controlled. For us this is unfortunate since she still has 1 seizure every 7-10 days. This has been the case for the last 8 months. She has never gone longer than 10 days without one and she's on medication.

So to help answer your question, if your child's seizures are controlled the higher their chance is of outgrowing them. One piece of advice is to search around for a good Dr. It makes a huge difference. My daughter has been hospitalized 3 times in 3 different states. There is a definite difference in the quality of Neurologists. Make sure you find one that you are comfortable with. And also understand that seizure disorders are very frustrating because nobody really has answers. Each patient is a different case. Good Luck to you.

Re: Grow out of seizures???

I had seizures starting at birth until about 7 months old. After about a year being seizure free my parents weened me off my medication and I have never had any other seizures or health problems. I am now the mother of a 5 month old who has had seizures from birth and I am hoping he too will outgrow his seizures. He is on keppra and it has been about a month since his last seizure. He was having grand mal seizures anywhere from one a day to every couple of hours. fingers crossed he doesn't have any more.

Re: Grow out of seizures???

My Grandson was diagnosed with "sit down seizures"..small ones, can't think of the name. He had 3 of them 3mos apart...he had one today 6mos since the last one. He is not on medication. Is this a good sign that he will outgrow them?? I know very little about epilepsy. No one on either side of the families have had this...anyone out there who can give us some advise?? Elizabeth

Re: Grow out of seizures???

My Grandson was diagnosed with "sit down seizures"..small ones, can't think of the name. He had 3 of them 3mos apart...he had one today 6mos since the last one. He is not on medication. Is this a good sign that he will outgrow them?? I know very little about epilepsy. No one on either side of the families have had this...anyone out there who can give us some advise?? Elizabeth

Re: Grow out of seizures???

We were told the same thing. My son just started having the seizures in Nov. of 2011. His MRI, EEG, CT scan and blood work all came back normal. He has been on Keppra since Feb. 1st.

Re: Grow out of seizures???

It all depends on the type of seizure your child has. My son was diagnosed two years ago with Absence seizures. He was also having grand mal seizures. The doctor said that 80% of children outgrow Absence seizures in puberty. My son took depakote which stopped the seizures and we recently weaned him and he's seizure free now.

Re: Grow out of seizures???

Hello All~ I'm not sure if this will help anyone but here goes...

My name is Briana and I am 27 years old, my last siezure was when I was 11. Unfortunately I no longer am in touch with my mother so I do not know what type of Epilepsy I was diagnosed with, but I do know I had a grand mall seizure shortly after being born (minutes). Recently a classmate at the University did a presentation on Epilepsy and it made me wonder what if any evidence there was to support me 'growing out' of my Epilepsy. I didn't find much but I can give hope to everyone on here. I stopped taking my medications for siezures when I was 2, so I know that is not what caused them to stop. I can't tell you how or why but slowly my siezures turned into migraines until I was free of all. At that time my nuerologist said it was something that did happen for some cases of Epilepsy. I now have no symptoms of either seizures or migraines and live a very full and active life. It can happen, you CAN grow out of it! I don't know how or why but I am living proof that it can happen. I don't normally comment on threads like this and I'm not sure if anyone will read this but thought I could give some of you hope and something to look forward to because it does happen.  :)

Re: Grow out of seizures???

Hi Brittany, my names Lynnette and im 16 years old and i have had epilepsy for about a year now

i really wanna grow out of epilepsy too, but when you tell people you have epilepsy you have no idea how much of a brave little girl you are, it is very hard having epilepsy sometimes i know it because i lost my baby and i stop breathing but they have no idea how brave you are and you should be very proud of yourself for coaping so well with it.If that is the way people you tell react to it then its not worth it don't let it bother you.Me and my dad have a joke about me having epilepsy and it's funny but we still realise how serious it is.

Don't let it bother you

Keep your head up high

Lynnette x x

Re: Grow out of seizures???

Hi Brittney my name is Kirsty and i HAD epilepsy.

i was diagnosed when i was about 12 or 13 and only ever had 3 seizures.

I am now 22 and no longer have these seizures. i was on medication for them but was weened off them when i was 17 and have not had a seizure since so you may be in luck and may grow out of them.

Re: Grow out of seizures???

I was told the same thing about seizures ceasing after puberty.  My daughter went through puberty at 10yrs old.  She is 14 now and still gets them.  I'm hoping to have the same outcome for my child that you have had with yours.

Hi.. All 'idiopathic' means

Hi..

All 'idiopathic' means is that no known cause exists (very typical - about 50% of cases) It has absolutely nothing to do with any possibility of being 'outgrown'.

As one who had epilepsy since I was three years old, the positive is that you need to learn about epilepsy so you can accept your son no matter what.
I'm sure if he had become diabetic you'd have np, but sadly epilepsy remains misunderstood (and feared) by parents.
I can assure you that whatever you 'see' he is most likely unaware of so the fear you may have is needless as 'his'mind is asleep.. & he is unaware of the show you are experiencing.

What he will note and what can have an enormous effect on a child (been there) is your reaction to what he can't control.
Yes, of course, continue to search for meds that control his seizures (75% of epileptics are completely controlled) but for now, try not to focus on his seizures to such a degree and hug him as he needs to know you accept and love him regardless.

While it's true that 'some' types of seizures are outgrown, the vast majority aren't. In fact, many people here were told they'd likely outgrow seizures and didn't.
So I'd recommend you find an epileptologist (a neurologist that specializes in epilepsy), educate yourself (epilepsy.com is a great information source) and, again, accept your son as he is for now.

~sol

Re: Hi.. All 'idiopathic' means

My 6 year old daughter has been diagnosed with idiopathic seizures. Our journey has been frustrating. It seems we can not get clear answers. I think alot of Dr. just don't know what is causing the seizures and what will make them better. I believe alot of Dr. are afraid to say "I do not know". Our daughter has failed four medications. We have heard her seizures may go away. With every seizure and every failed medication. That hope seems to illude us. I have talked to mom's who have kids who have had a one or two seizures and they have outgrown the seizures. My daughter has had 30 seizures this year. I still hope she will outgrow her seizures.I hope your child will out grow seizures also.

FYI-As for MSUD, I have alot of experience with MSUD. My cousin who has been like a sister-was diagnosed with MSUD a couple days after birth. She is now 36 years old. Seizure free. I think it very unlikly your child has MSUD. Children with MSUD can only withstand trace amounts of protein before becoming gravely ill. If you are searching for a metobolic problem. Amish Dr. in Pennsylvania are the experts on these rare diseases. Check to see if newborn screening in your state tested for MSUD. Then look into PKU. I do beleieve there is a relationship between these rare metobolic problems, Ketones and seizures.

Re: Grow out of seizures???

Actually, I 'outgrew' my epilepsy. I was diagnosed 28 years ago, at the age of 7, with "petit mal" seizures... now known as absence seizures, I believe. I lived with seizures until about the age of 13, when I remember having my last one. I remember because the doc had told me that when I was 2 years seizure free, I could come off all my meds. I had 6 months left when I had that last one. I didn't tell my mom, cuz I thought being med free would make me normal. (Little did I know :-) That was the last one, though. I have never had one since. My neurologist told my mom that as there was no reason for me to have the seizures, I would outgrow them, probably within 7 years of the onset. That I did.

Re: Grow out of seizures???

Hi,
My daughter, who is six, was just diagnosed with absence seizures. I brleive she has been having them for atleast two years though. They have gone undetected because she just appears to be day dreaming when she has a "spell". It lasts for about 5-10 seconds. She experiences them sporadically throughout the day, but doesn't even know she has had one. I haven't started her on meds yet. I'm just curious, everyone seems to have a different story, what were your seizures like? Which med were you on and did you have any adverse side effects? Amy Davenport

Re: Grow out of seizures???

Amy, 

Absence seizures are simple partial.  They usually aren't detected because they're so short, & look like daydreaming.  It's imperative she gets her AEDs for her safety.  It's common to have amnesia after our seizures.  She might outgrow them, but it's possible to have S.P., then convulsive, C.P.  Mine weren't diagnosed until my 1st C.P. @ 16.  Started on Phenobarbital.  I felt suicidal the 1st week.  Switched to Dilantin; no side effects.  Been on it, & several others, ever since. 

Everyone's story is different because every brain is different.  There are many AEDs to choose from; all can cause serious side effects.  If she doesn't respond well to one, put her on another.  The videos on this website can give you more detailed info.

Re: Grow out of seizures???

Hi Amy, my daughter has the same type of seizures.  She was diagnosed at 8yrs of age thanks to her 3rd grade teacher that noticed it.  It does seem like she is day-dreaming.  She is 14 now and she still gets them, however the medication helps with how often a day she gets them.  I'm hoping she grows out of them.  She is currently on Lamictal and Ethosuximide.  Her doctor is still trying to find the right medication to keep all her seizures at bay.  As for side effects, they say mood swings and weight gain, but my daugther has not shown signs of either.  She's even tempered and is not at all overweight.  Not sure if this had anything to do with the medication, but she started mentruating at 10yrs old.  Good luck to you and your daughter.

Re: Grow out of seizures???

Yes, in fact my child was diagnosed with a type of epilepsy that the kids outgrow (fingers crossed). It is called Benign Occipital Childhood Epilepsy or Panayiotopoulos Syndrome. There is also Benign Rolandic Childhood Epilepsy, also another form stats show the kids outgrow. Has your child's epilepsy been diagnosed as a particular kind?

Re: Grow out of seizures???

Ekoorb,

I have read your posts and I know you are very knowledgeable on this type but this is just a post that other parents may read and know some things are not always what they seem and there is another misdiagnosis but ultimatly resolved case. 

Parents know all the different conditions or types of Childhood Seziures.

Knowledge is key!

My Daughter was also diagnosed with Childhood Epilepsy, until I did over 100+ hours of research.  I compared her symptoms and eeg results etc... to everything I could find.  What I found was that she 100% matched Panayiotopolos Syndrome.  It took dealling with a very upset doctor, providing him with facts regarding medications possibly increasing the seizures to get him to retract the use of medications.  I am not saying medications are un-neccessary but in our case she had only one seizure lasting >20 minutes.  We are now almost three years with no seizures.

Our Daugter's Case

3 years old, one hour into night time sleep, vomited, became unresponsive, eyes and head tilted to left, lasting >20 minutes, EEG was abnormal (occipital spikes) during sleep and there were brief generalized discharges (like that of absent seizures).  She had no cognitive or motor skill damage.  She is a bright 5 year old almost 6 and has shown no signs of any type of seizures since that night.

Good luck all and God Bless

Re: Grow out of seizures???

KMolder-  I was not clear from your post if you were saying I gave some incorrect information.  I hope not.  I am just trying to help because I was very fortunate to find an incredible doctor who was able to diagnose our daughter.  Because BOCE is not as common, when I first started on this site, there was little to no discussions on it.  I wanted to make sure that anyone who was as terrified as I was over 4 years ago had access to our knowledge and could find a fact pattern similar to ours in case their doc was not giving a specific diagnosis versus a general seizure disorder.  Having a name to it helps the family on so many levels and the knowledge is key for meds and other decisions.  If there is anything I need to clarify or correct, please let me know.

Re: Grow out of seizures???

Ekoorb,

I must not have reread my post before sending it, it was vague.  What I was trying to say was that you were very knowledgeable on this subject and that My daughter was another case in point.  Additionally, I wanted to reiterate your posts by saying we had to do the reasearch ourselves and that our doctor had never heard of Panayiotopoulos Syndrome and was not willing to recognize it until we (my husband and myself) provided him with information he could not deny.  Additionally, is the fact that I called 27+ neurologists in the state and non had ever heard of Panayiotopoulos Syndrome, so I agree with you totally, knowledge is key for doctors, children, and families in everyway.  Sorry I was not so clear, sometimes I get very upset at the way our US doctors seem to treat our children in an assembly line fashion without recognising that there are many different classifications that should be treated differently not the same. Thanks :)

Re: Grow out of seizures???

Got it!  I am glad things are going well for your daugther and I am glad you were able to help your doc figure things out.  The best thing we did was find a Pediatric Epilepsy Specialist.  I think a lot of people don't realize they can find a doc who only focuses on epilepsy.  The benefit was he knew exactly what BOCE was and diagnosed our daughter.   Take care.

Re: Re: Grow out of seizures???

How I could forget this - search me. I've even hesitated to post it, but? It's more info on the heap and I'm assuming that's what we all want. My son was diagnosed when he was 7 weeks ago. By the age of 19 his sz's just suddenly stopped. I couldn't figure the timing out either because he'd just started college which was inordinately stressful for him, he was away from the home the first time and very homesick. He made comments like he felt different, more clear headed, other things I can't remember. Eventually he went off of his AEDs, still didn't sz - for 6 years. His neuro at that time said it was neither expected nor unexpected in his type of epilepsy. He could start sz'ing again or never but he would always have epilepsy he said and a low sz threshhold, now that is in HIS case. After a few years, I didn't believe he had anymore. Howver, we had a very stressful family occurrence 6 years later and? He started sz'ing again and is now back on AEDs, has to watch his triggers or he has break throughs but if he is very careful with all his triggers, he does well. And? Who knows maybe him, his daughter, one of my daughters, might stop for awhile, or longer than while, too. Anything's possible I now believe, at least for us. But I will say as wonderful as those years were for him when he quit sz'ing, was at last and for the first time off of AEDs? I think he never could let go of the nagging worry, how long will it last.

Gretchen

Re: Re: Re: Grow out of seizures???

I started having seizures at 8 years old. I stopped having seizures at 14 years old. I have not had a seizure since. I do have a low threshold. I had a car wreck several years ago and went on Topomax for a while. I was on Topomax 75 days. I came off because I had a severe pesonality reaction to that drug. My daughter is 6 and recently began having seizures. It looks like it will be Panayiotopoulos Syndrome. I feel confident that she will outgrow them as well. Based on my experience, everyone is different, and you should monitor and log all seizure and neuro activity forever. I always consider whether I am getting enough sleep as well as other known triggers. Stress is one of my biggest. Your chief goal should always be to raise a child who can grow up to be well adjusted with or without seizures, because once you are prone to seizures and have a low threshhold, you will always be prone and have a low threshhold whether you outgrow the seizures or not.

Kelly

Re: Grow out of seizures???

My daughter was diagnosed with epilepsy 5 years ago, she was 1 year old at the time. We have continuously been told by the Neuro that she can/will grow out of it. her seizures are idiopathic, I have e in my family but it is my grandmother (her great grandmother) so we were told it is too far removed to be a genetic link. I continue to hope that she will outgrow the seizures. Right now she has been seizure fee for a year and they want to wean her off her dugs. This is the part I hate the most cause while you are weaning you are in constant stress - alert mode waiting, waiting, waiting. Wondering when it will be. When will the seizure start? It makes me feel very horrible. I can't see an ambulance with out getting a cold chill in my body. I hate them. I hate hospitals too my daughter has spent too much of her little life bing in them.....anyways, have hope, it might happen. They might outgrow it.

Hello, My daughter is in

Hello,

My daughter is in the same exact boat, she is turning 4, seizure free for over a year, her grandmother had it, Im dying to take her off of the Kepra, I would love to talk and exchange numbers.

Re: Hello, My daughter is in

I am always amazed at how little information you can get from a doctor.  My daughter, 8 in a few weeks, was "diagnosed" with generalized seizures in 2006.  I just found this out last week.  I never knew what type of seizures the doctor thought she had.  We've heard that she may or may not outgrow this.  They just don't know.  Oh, well.  We never gave her meds but now are considering starting her on Keppra.  From what I was told, after being seizure free and on a med for 2 years, the doctor will start the weaning process.  We'll see what happens.

ChiTownMom Just A Mom Doing Her Best For Her Child

Re: Hello,I have idiopathic Generalised Epilepsy

Hello my name is Lynnette Davidson from Scotland,(16 yrs old)

 I started taking seizures in January of 2008 and i think your right about the doctors after i had three fits they decided to test me for epilepsy and i was 15 at the time. I was diagnosed with Idiopathic Generalised Epilepsy in November 2008 and i was started on Epilim straight away and it worked great but then i took a turn for the worst i began to stop breathing during seizures and my dad was very scared i was pregnant when i began to stop breathing during a fit and saddly i miscarried.(a little boy) i was then soon started on keppra as my fits were so out of control and happning up to 3 times a day and still are.Although! my dad said that since i was started on keppra my body stopped jerking about so much at the lower part of my body of course. I would strongly suggest you start your little girl on keppra it is well worth it so far of what i have been told. I go into the Southern General Hospital in a week for a EEG for 4-5days so i wont be able to move much lol but i am going to ask if i can have a VNS done you should look that up it may interest you in the future.

 

Hope all goes Well

 

Lynnette Davidson

Scotland x x xx

Re: Hello,I have idiopathic Generalised Epilepsy

hi i noticed in your blog your from scotland, i am also. to see if we could chat my user name is pacificheights, do you go on to main chat

Re: Grow out of seizures???

My daughter was diagnosed with complex partial seizures. Her seizures are also idiopathic. We saw our neuro a couple of days ago and he is of the opinion that if the seizures are well controlled with medications, there is typically a higher chance of "outgrowing" the seizures. This is not indicative of the type of seizure either. He said that most types of seizure can be outgrown. So there is hope that your child will not have to live with seizures for the rest of his life.

Sadly, we believe our daughter began to manifest a new type of seizure today, Infantile Spasms. She started throwing herself forward at her waist. At first we thought she was just trying to sit up, she is 12 weeks old, but she kept doing it over and over. It was pretty scarry.

Her appointment with the neuro went so well on Wednesday. Her development has been on target so far, so we are hopeful that she will be ok. We go back to Children's Hospital tomorrow for yet another hospital stay and EEG. We are hoping for the best.