my daughter is gonna start to be weaned of her meds for epilepsy any advice

Dawn - posted on 11/28/2012

can not seem to find many children or people with my daughter's seizure disorder. She was diagnosed in February of 2008 with Jeavons syndrome eyelid myclonia ( can not retain information and learning disability in school, rolled eyes constantly before meds), which if you ask me every child with epilepsy can have their own syndrome as the symptoms and duration manifest so individually for each child, its frustrating. Just wish I could find someone that can tell me this is what is going to happen for certain!!!!! I was told at diagnosis her syndrome is statistically lifelong but that epilepsy is such an unknown field of medicine of how and why people have it is unknown and anything could happen...turns out Sept of 2011 and 4 EEGs since then shows her syndrome is age related and she is outgrowing it as it has become more and more localized in the occipital lobe each EEG since then and she is retaining 80 percent better. My fear is the unknown of how did she get it to begin with so how would they know it's age related. I am weaning her off one of her meds Keppra 3ml in am and 3 ml in pm, i am down to 1/2 in am and 1/2 in pm and she seems better than when she was on it. If anyone has a story similar and has any advice, i would appreciate it!!!!!

Sherry - posted on 01/17/2012

I know this is an old post, but what was the outcome with your daughter? How old is she? My son's neurologist is weaning him off his Depakote over the next 3 months. He has been seizure free for 3.5 years and we have always believed that his seizures were linked to brain maturation, but we can not know this with certainty. We just have to see what happens when we take him off his meds. He will be 17 in 2 months and still has more brain maturation, as boys' brains don't full mature until they are around 24. I am wondering if anyone went through this and what was the results.

Cheryl - posted on 02/26/2009

hi sarah how long has ur son been on valproate and does he slap and bite you now also does he like to bang his head all the time as this is wot my lil girl is doin and shes only been on it for 4 months.x

Sandy - posted on 02/26/2009

Has she had a Video EEG? This will show (most likely) if she is still having any seizures. My son actually had 'inward' seizures. Yep! He looked great but he was seizing internally with NO outward signs! NO eye flickering, no lip pursing, NOTHING to tell me he was seizing! I would do the Video EEG before doing anything! I know that the meds do damage but the seizures do more damage. You need to do what is best for your daughter. The doctors use these kids as experiments, at times! As long as your daughter is doing well in school, has good behavior and no seizures ... I would be hesitant to do anything. Keep me updated, please. Sandy

Kelly - posted on 02/25/2009

hi yes its her consultant who wants to take her off them as they want to see if its the meds controling her seizures or she has out grown them as she will be 7 in may x

and the meds can do more harm if she is on them to long but he did say if she has anymore seizures while they are still weaning her off then he will start to higher the dose again and be on them for another 2years she seems to be doing ok so fingers crossed x

Patricia - posted on 02/25/2009

Hi Kelly,

Whose choice is it to wean your daughter off her meds? Why do the doctors want to do this? Is it your doctors advise?

Nickie - posted on 02/25/2009

Being a mother of an epileptic and a Registered Nurse of course you should start her on meds. Of course, you should see a good Neurologist who specializes in children and they can recommend further treatment or an EEG. Good luck, you will feel better knowing she has some protection.

Kelly - posted on 02/25/2009

my son has had his first fit when he was one and when he had no fits for two years we tryed it and i just kept my eyes on him and he was put back on his meds when he started having them again but i would not worrie to much she may not have any.

Sandy - posted on 02/25/2009

I would NOT be too quick to take her off meds!!! When and if you decide to take her off the drugs ... go SLOW. Don't shock her body! My son never had this option because he is still seizing on adult doses of Trileptal ... after 6 brain surgeries that have left him with only 40% of brain. Good luck! I know you are scared but like I said .. go very slow with this. Sandy

Kelly - posted on 02/25/2009

hi to all thanks so much for advice my daughter is on epilim and tablets she is no longer on the tablets now and her epilim has now been reduced to a lower dose she seems to be doing really well had a absence seizure last week which lasted a while but we think it was due to stress but if she has anymore gotta increse everything again and wait another 2years but fingers crossed x

i was just wondering if anyone has noticed there childrens eating patterns as before she started any meds she ate really well and would love her food but now she only eats certain foods  she has got a thing for cheese and will only eat that and crisps but just latley has been eating foods again which she loved before and im not sure if its cause she is now only taking a really low dose of meds and its nearly out of her system that she is eating again and she is now losing some weight which she put on when started her meds has anyone eles had these problems would love to hear apart from that her behavier and stuff is fine x

thanks kelly

Victoria - posted on 02/25/2009

Our son had absence seizures and was prescribed Kepra to help limit the number of seizures he had per day- there wasn't even a guarantee that they would stop.  We read for hours about the truly horrifying side effects, and then alternative remedies.  We found a site that highly recommended using fish oil in place of, or as a supplement to, prescription remedies.  It had hundreds of people that commented with amazing success stories.  We did the research and it was scientifically sound from our perspective, so we decided to try fish oil first, and if we didn't see a decrease in the number of absence seizures per day, we would consider Kepra at that point.  We saw an immediate decrease in seizures on day 1.  Less than a year later, we see them rarely, if ever.  We never once filled the prescription.

I guess my point is to try using fish oil- it has been amazingly successful for our son, and us.  And the positive effects span far beyond our boy's epilepsy.

Betty - posted on 02/25/2009

Hello kelly My son was slowly taken off meds twice being siezure free on the meds last time he was fine for 3-4 months before starting having them again .My son is 17 right now hes been on meds since he was young too and they thought he may grow out of them too but he hasnt specialist says he seems to do fine just staying on them now so we'll see how that goes. I can understand ur fear of them taking ur daughter off the meds just keep close eye on her and as well have one at school be notified of what ur drs doing so they can also monitor her as well . It will be scarey right now but just hope for the best and if she has to stay on meds that are helping her stay siezure free thats a good thing she may not like being on meds or having these siezures but if meds are ur only answer and helping I'd be happy about that part. Though seeing and knowing ur child has this condition is scarey no matter what Just have to Love them and be supportive and say ur prayers u still have them with u and pray for the best in life for them .

Sarah - posted on 02/23/2009

Hi Cheryl, my son is on sodium valporate as well and Ive noticed he is very agressive also. Im hoping it calms down soon! xx

Cheryl - posted on 02/22/2009

hi kelly i just wondered wot meds ur daughter has been on as my daughter has been on sodium valproate for the last 4 months and i have noticed that she has been agressive since has ur daughter been on this one if not sorry to have bothered u....hope it goes well for her.x

Benita - posted on 02/22/2009

I would suggest you listen to your gut and do what you feel is right. We weaned our son very slowly (took about 9 months) off his meds and the number of seizures a month decreased and he seems more in control when he has one.

Donna - posted on 02/21/2009

My daughter was weaned off of meds 3 times and she stayed seizure free for 6-8 months and then seizures came back. She has NEVER had a seizure on meds so next time they suggest it, I will be adamant, no!

Stephanie - posted on 02/05/2009

We just recently weined our daughter off one of her four meds she was taking. (Tegretol - as it wasnt working as it should for her type of seizures). She was taking 6mL twice a day. So we weined her off 1mL/daily dose a week. She did have a couple minor seizures as her body is so used to having that medication. But since she has been off of it, she has been doing great. My advice is to just do it slow, precisely as the doctor suggests and keep a close eye on her behaviour and such. Hope all goes well!

Lauren - posted on 02/01/2009

We tried to wean our son. We halved his dose in October for two weeks and then stopped completely. He had another seizure on Boxing Day and we put him back on. We're lucky his responds well to Tegretol.

Lucy - posted on 01/26/2009

my son is been weaned off his at the moment he had over 1000 seizures a day until 19th of dec when he had a tonic clonic and his seizures stopped instantly much to the shock of doctors

Deana - posted on 01/21/2009

My  7 year old daughter is just starting the weaning process as well. She was diagnosed with abnormal absence seizures 2 1/2 years ago and has been seizure free for 2 years. When her seizures showed up it took only  2 months to find Depakote and Zarontin worked well enough together to control her seizures. She is now completely off Zarontin and will be having labwork and an EEG this Fri to see the levels  and check for any seizure activity and determine the best way to wean off of Depakote. Anyone else experience weaning off of Depakote for a child that has absence seizures?

Laura - posted on 01/20/2009

We have attempted to wean my 7 yr old daughter about 4 times now and each attempt has been unsuccessful.  She has been on AED's since she was 14 months old starting with Dilantin (I think we are on the fifth or sixth med now).  Unfortunately when the drugs are completely out of her system that is when the seizures have been the worse, she has even had status epilepticus during weaning. 

I am not writing this to scare you, just to tell you our experience.  I hope your weaning process goes smoothly.

Rhon - posted on 01/05/2009

my daughter's neuro just suggested letting her grow out of the med. that way she still has some in her system and as she grows there is better chance of gaining control again. Howvever, her sz disorder is hard to control. She was sz free for 3 years and started again recently. Thank God she was still on the med. We are still struggling for control.



The neuro would likely tell you that if there was a risk associated with side effects of staying on the med while she grows and weans herself naturally. I think it depends on circumstance. What's right for your child is not right for mine. But each child is different.

Agree with the neuro only if you feel it is safe.

Alison - posted on 01/03/2009

My son Nicholas has just been weaned off Keppra a week before Christmas (08). So far he has been seizure free. Over the past couple of weeks I've noticed that his speech has improved. He has global delayed development. I know how you feel it is very worrying, especially when he's in his room and he's very quiet.

Tia - posted on 01/03/2009

Just hope for the best. My son was weened of the meds and it went well. He did have a couple episodes on his third birthday but that was 2 1/2 years of beeing off meds, and I also think it was the enviroment we were in that may have caused it. Since we moved he has been fine. Maliki will be 6 in August.