12 year old son diagnosed with JME

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1612brianna

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My 12 year old son has been diagnosed with a generalized epilepsy since age 5. He took Depakote until age 11. He was switched to mlamictal due to side effects from Depakote. Needless to say then side effects from thelamictal were so horrendous we had MTO switch into Keppra. 2 Days ago we went to neurologist due to increased seizures (arms jerking) and he believes he has JME. Starting yesterday morning her had 2 tonic clonic seizures and 2 this morning. He was put on zonigran as the Keppra was not effective at controlling his seizures. Although he has had epilepsy for most of his life the diagnosis of JME is new to me and the new tonic clinic seizures are very frightening. If anybody has a child with same diagnosis and could offer information as what to expect or things I should be particularly watchful for it would be appreciated.

A little frightened.:ponder:
 
Hi 1612brianna, welcome to CWE!

The JME diagnosis seems odd, since onset is usually in the teens or twenties rather than younger. But I guess the only thing consistent about epilepsy is that it's inconsistent...

Just out of curiosity: What form did his generalized epilepsy take when he was younger? What were the side effects he experienced on the Lamictal?

I think the primary trigger for JME is sleep deprivation, so whatever you can do to make sure he gets a good night's sleep is key. Sometimes photosensitivity is an issue, so he may need to avoid areas with flashing or fluorescent lights. Some CWE members with myoclonic epilepsies have found that adding a magnesium supplement can help with the jerks (since magnesium plays a role in brain health and muscle relaxation).

If he has absence seizures in addition to jerks, you may find that other dietary changes can help too, particularly if the medications prove problematic. The Modified Atkins Diet has been able to help reduce or control seizures. See http://www.hopkinsmedicine.org/news...ins_Diet_Can_Cut_Epileptic_Seizures_in_Adults

Best,
Nakamova
 
Thank you for the response. My son had terrible anxiety almost to the point of panic attacks on lamictal and abdominal pain that was debilitating. He had no seizures on lamictal but just could not tolerate it. We have discussed with his neurologist the modified Atkins diet and that is our next step. Before this new diagnosis his seizures were well controlled and now out of the blue he is having tonic clionc seizures all through day and tonic clinic the past 2 mornings. Just looking for some feedback from somebody who might have experience with this type of epilepsy. Thank you so much for the information.
 
We do not have experience with Juvenile Myoclonic Seizures (but we do with tonic-clonics -- more than we would like!)

I'm wondering...how long was your son on Lamictal, and how long ago did you do the wean from Lamictal and add on Keppra (in relation to when these new tonic-clonics and arm jerking started up)?

It COULD be (especially if the Keppra is ineffective, as it was for us) that what your son is experiencing are weaning seizures. It sounds like both Depakote and Lamictal were effective in controlling seizures (but side effects couldn't be tolerated), so when you weaned from Depakote, you were adding in Lamictal, so that would prevent the weaning seizures. But maybe when weaning from Lamictal, if the Keppra was ineffective, then he experienced seizures.

It is common to have seizures when weaning off a med, especially if it's a relatively quick wean -- and even if the medication was not effective to begin with (we experienced this with Keppra and Diazepam).

Another thought -- there have been reports of new seizures starting when a person goes on Keppra. We didn't have new seizure types on Keppra, but we did think it might actually be triggering seizures. Here's a thread from this forum on that:
http://www.coping-with-epilepsy.com/forums/f23/can-keppra-actually-cause-you-have-seizures-2393/

Our son is on Zonegran and also the Ketogenic Diet, and this has been controlling his seizures well (no seizures since January). I think you're taking the right step in the MAD diet.

Make sure your son drinks LOTS of water (and a little lime or lemon in the water is good) while he's on Zonegran, as it can cause acidosis.
 
Hello 1612brianna,

My 15 year old daughter has also been diagnosed (at age 14) with JME. Her diagnosis seemed to be a bit more "textbook" for JME. Puberty onset with morning myoclonic seizures. Looking back, I think she also had some absence seizures along the way and her EEG confirmed this. She has yet to have a tonic clonic (got her on meds early on - knock on wood). It was my understanding with JME is that the seizures are within one hour upon waking or late night if very tired.

I could be off on this but I thought that the EEG had specific spikes that help to determine the JME diagnosis. Also, JME can have a genetic factor (although we do not have this in our family as far as we could tell) and importantly the morning myoclonics specific upon waking.

Paige in on 300mg of lamictal and we are still not seeing myoclonic control. Ugh. Keep us posted on how your son is doing. Glad you are here!
 
Thank you for the responses. My son was weaned from lamictal in February and started on Keppra in February also. There is a family history of epilepsy as my brother had it but I do not know what kind. My son wakes up in the morning with the worst seizures, myoclonic and tonic clinic twice this week. They seem to lessen as the day goes on.. The neurologist did say at our last visit that is eeg supports the diagnosis. We just started zonigran and am hoping for the best. Thank you for the advise to drink plenty of fluids.
 
I do not have experience in this area, BUT, I just wanted to say what an amazing mom you are for having to go through this! It must be so hard! I'm new here as well. My son started having seizures only a month ago...only to realize that likely he's been having them for a long time and we just didn't realize.

Now, my oldest (she is 12) is having an MRI and EEG ordered since she is having such a hard time with constant migraines and her pupils dilating all the time. She also has periods where she just spaces off...

My son on the on the hand has had tonic clonic seizures (2 in the last month), but, I can't imagine having to deal with so many a day!

I hope you can get answers for your son soon. That has to be so hard! :(
 
It is very difficult but thank goodness his neurologist called about 10:00 last night to check on him and increased his dose of zonegran. Today is a good day. I have high hopes this medication will work.

My son has had epilepsy since 5 and until just recently it has not altered what he could or could not do. Keep strong and know that they can lead a normal life with epilepsy. I believe that healthy living and diet are huge for children and especially ones with epilepsy.

One piece of advise I can give is to find a neurologist or epileptologist that you connect with. We have been to a few and some just hheaded us through like cattle. After investigating in my area I have found one that listens to what I have to say and answers all my questions with honesty. No sugar coating but always options.
 
I'm soooo glad it's a good day for you!

Thank you for the advice. This is all so new to us and very overwhelming for sure. Right now, I do feel like we are being herded through and not listened to at all. It takes forever for me to get ahold of someone...and feels like constant phone tag just to ask the question, 'Are eyes dilating a sign of a seizure?'. I asked this 3 days ago, and they were going to 'call me back'...and so far, I have yet to get my answer or connect with someone about it. It's very frustrating because we drive 3 1/2 hours just to see a Neurologist. :(
 
They can go along with seizures yes. Not always though because it be something causing them to dilate. I know my son has had some where his eyes dilate and he flutters his eyelids. Sounds very frustrating. I would definately call back if it has been 3 days. My neurologist office calls back the same day even if like yesterday it is late at night.

It is very scary but do your research and you will become your children's advocate. You know your children better than anybody so what you observe and can report to the doctor is very important and they should see it that way.
 
Well, I have tried calling every day, but, we keep playing phone tag. Really frustrating. I just don't know why they couldn't tell me that when I first called...very frustrating.

After today's visit to my daughter's PCP, I feel confident that most likely she is having seizures too. :(
 
I am sorry to hear that. It must be very frustrating but keep strong. It is good to hear from other people who are parents of children who have epilepsy.
 
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