Epilepsy Foundation

Hello all, it's been a while. I am wondering if it's possible to outgrow seizures? I've heard it is. My dd, 14.5 now has, according the the epileptologist, not had a szr in 1.5 years. she has been having horrible questionable side effects to Lamictal however. We were wondering, maybe she just outgrew the seizures and needs to be off the meds. Her last several EEG's were all clean, no seizure activity, but she keeps getting "sick" we think from the Lamictal.  She gets dizzy, nauseaus, shaky, tired a lot, just out of it, she says.  What do you guys all think??? We don't know what else to think could be causing her these strange symptoms... thanks as always...

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Hello, from what my sons doctor has told me they can outgrow it. My son just got diagnosed in February he is 4. They told us they would put him on trileptal for two years then wean him off and do another eeg. They told me about 60% of kids outgrow it but if it persist beyond puberty then the chances are much lower. have you asked for another eeg? Taking her off would be worth a try if she has not had any in a year and a half... Those meds can give some pretty bad side effects sometimes I wonder if the side effects from the drugs are worse!
Has she had an EEG recently to see if these symptoms are actually szs? Or has she always had these symptoms since starting the lamictal? Or has she recently increased the lamictal or lost weight, which may have made the level even higher?

And yes, it's known that children can outgrow szs. I hope that's the case for your dd.

hugs,
babs
I understand that it is possible to outgrow certain types of epilepsy but not all. I would be inclined to think that Lamictal is working. I remember some odd side effects and gastric issues with Lamictal.
She has had 3 EEG's in the last 6 months, all clean, because she keeps having these weird side effects. I really think she just needs to get off this medicine. Thanks for letting me know that she isn't the only one with odd side effects. We are getting blood work done first then I want them to start taking her off. She is so frightened all the time because she doesn't know what's wrong with her and just feels crappy alot. Thanks everyone.
wondering why so many EEG's in the last 6 months? Do her weird side effects included twitches or such? were they thinking that maybe some the sickness was seizure related? Lamictal was not our friend at all. Made Matthew have drop seizures. No sooner he was off of it and they stopped. they did not appear either until lamictal. hugs
My dd didn't have sz for over 2 yrs so they weaned her off the depokote she stayed sz free for 1.5 yrs but then when puberty hit, her sz came back worse than ever. She tried a few drugs including lamicatal but it didn't control sz, tasted bad, and she got "shaky" or blurring vision. She also had the only partial sz she ever had on the lamictal. Plus sleep walking on lamictal.

Anyway, they finally put her back on depokote and she didn't have any sz for 2.5 yrs. so she was weaned again the summer before starting college. However, the sz came back and she is on Keppra now. So far the only times she had a sz on keppra is when she forgot to take them for 2 days...this has happened twice since she lives in the freshman dorm. Now she is really motivated to remember to take them so she can get her driver's lic. back.

Pat
Thanks everyone. She had so many eeg's because the doctor wasn't sure if she was having real szr activity or medication side effects. We are now thinking it has all be side effects. She's dizzy every day, shaky, can't concentrate, scared out of her mind to be in school and just feeling awful. She did bloodwork this morning, waiting to see the Lamictal level. I just want her off this stuff now and hope she feels better.
Good luck and please keep us posted on what the lamictal level comes back at. My little guy is only on 50 mg am and pm of lamictal. He does complain occassionally of headaches, being dizzy, fatigue. All things that can also be side effects of lamictal. It's so hard to tell with all they have going on, seizures, meds, and he is on keto but I am curious how this turns out for you. Hoping you can do a wean!!

Cherie
Thanks Pat, I'm curious, does your dd have Generalized E? The doctor said she could outgrow that, but your story does give me hope that she can be controlled. I would be happy with that. I just want for her to not feel scared all the time because she feels "sick" from all of this!

phaley said:
My dd didn't have sz for over 2 yrs so they weaned her off the depokote she stayed sz free for 1.5 yrs but then when puberty hit, her sz came back worse than ever. She tried a few drugs including lamicatal but it didn't control sz, tasted bad, and she got "shaky" or blurring vision. She also had the only partial sz she ever had on the lamictal. Plus sleep walking on lamictal.

Anyway, they finally put her back on depokote and she didn't have any sz for 2.5 yrs. so she was weaned again the summer before starting college. However, the sz came back and she is on Keppra now. So far the only times she had a sz on keppra is when she forgot to take them for 2 days...this has happened twice since she lives in the freshman dorm. Now she is really motivated to remember to take them so she can get her driver's lic. back.

Pat
My husband outgrew it. His last seizure was at 12yo and he's been off meds since 14 (he's now 36). He was on dilantin for most of his childhood. I hope you're able to figure out why your daughter is feeling so awful.
Doctors told my parents, when I was a child, that I would outgrow my seizures.
I did outgrow the absence seizures at around 8, as well as the tonic clonic seizures. Those are both generalized seizures. I never did outgrow my SPs where I see lights, but they certainly got less severe around 13 years old or so, and didn't come back until after a (possible) TIA when I was 24.
A lot of studies show that people who have been seizure free for 1-3 years on meds can also slowly wean off the meds, and not have seizures anymore.
Good luck! I hope she can get off the meds.
My dd does have Generalized tonic clonic sz. The depokote kept her well controlled but the docs were worried about potential side effects for women of child-bearing age. We didn't see any side effects but depokote has been linked to higher risks of birth defects....not that I am ready to be a gmom..she is only 19.....

The keppra seems to be working without any side effects. No rage, no learning issues that weren't there before. However, it doesn't seem to stay in her system as long as the depokote did...

DD did not like the lamictal....besides the taste (are they coating them now?) it may her dizzy and what she called fuzzy vision. Slightly nauseus like a little motion sickness is how she described it.



Gailinsmom said:
Thanks Pat, I'm curious, does your dd have Generalized E? The doctor said she could outgrow that, but your story does give me hope that she can be controlled. I would be happy with that. I just want for her to not feel scared all the time because she feels "sick" from all of this!

phaley said:
My dd didn't have sz for over 2 yrs so they weaned her off the depokote she stayed sz free for 1.5 yrs but then when puberty hit, her sz came back worse than ever. She tried a few drugs including lamicatal but it didn't control sz, tasted bad, and she got "shaky" or blurring vision. She also had the only partial sz she ever had on the lamictal. Plus sleep walking on lamictal.

Anyway, they finally put her back on depokote and she didn't have any sz for 2.5 yrs. so she was weaned again the summer before starting college. However, the sz came back and she is on Keppra now. So far the only times she had a sz on keppra is when she forgot to take them for 2 days...this has happened twice since she lives in the freshman dorm. Now she is really motivated to remember to take them so she can get her driver's lic. back.

Pat

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