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rohr28

16 Year old Son just diagnosed with JME

I am very new to the world of JME.  My son was diagnosed in early September with JME after 3 months of 10-20 times a day of him experiencing dizziness, loss of sight, can hear but unable to respond spells.  The diagnosis was made after a 24 hour eeg that lasted 1 hour, due to him having 3 seizures after being connected.  The neurologist started him on Lamotrigine and he is now at 200mg and continues to have the seizures.  It seems that the seizures are more frequent when he is inactive.  He has not had a Grand Mal Seizure, only the 10-30 second seizures.  I am curious if anyone else has these type of seizures without the jerking motions?  He does not seem to have the jerking motions at this time during the seizures.  I am just concerned that they may not have the correct diagnosis, due to the medication not effecting the seizures.  We go back to the neurologist on Wednesday and I can really use some advice on what I need to discuss with the doctor.  I am feeling helpless and frustrated while my son becomes withdrawn and angry as he stands on the sidelines with his football team waiting for the medication to work.

 

 

 

 

 

Comments

Re: 16 Year old Son just diagnosed with JME

Those are called partial seizures. Please know that there are 60 different types of seizures and only a handful the convulsive type. What he may be experiencing are what are known as absence seizures in which a person temporarily stops what they are doing, and even though they are conscious, they are unable to move or respond. Typically the last for a few seconds up to a few minutes. Some partial seizures may develop to tonic clonic, so it is important to take the medication.

It may take some time to be able to find the correct dosage/medicine combo, so please be patient. I know all of this can be scary and frustrating.

Have a list of questions for the neurologist, make the best out of your visit that way. For what I hear, absence seizure are hard o control, so again, it may take some time to find the correct medication and dosage combo.

Last, do you know that epilepsy can be aggravated by hitting ones head or that seizures can be triggered by hitting the head? You may want to discuss that with the neurologist. I don't know what position your son plays, but accommodation may have to be made.

I believe Jme js a general term used to describe childhood onset epilepsy, but more test are needed to determine which type is pilepsy it is, where is it moving from etc.
Best wishes

Re: 16 Year old Son just diagnosed with JME

Thank you so much for your response.  My son has not played football since June and just travels with the team at this time.  The Dr. did talk about the absence seizures in the beginning and the samples I have seen are similar to what he has.  I appreciate your words of encouragement, it is very frustrating as we wait for the medication to begin working.  I will make a list of specific questions for the Dr. to make sure he understands exactly what is happening.  Sometimes I feel they do not listen completely and jump to a diagnosis.  Thank you again for the information and support.  I will share the information we find on Wednesday as we continue our journey to being seizure free. 

Re: 16 Year old Son just diagnosed with JME

I hear you! My son has been recent,y diagnosed at age 15 after having just one tonic clonic seizure. We had to wait 3 months to see a neurologist and in a short time they said, it is Jme, medication for life, take this, go home. No explanation, no deep investigation, .... The truth is no one really knows why epilepsy happens in most cases, and believe or not, they not know why some medications work. Neurology is a vastly undiscovered field, but luckily many advances have been made in recent years.

For the next neuro appointment 3 months after, I had a very long list of questions, it is their job to tell you, so ask away! Also, this site is a wealth of information, from the articles to people in the community that face similar issues. People here are very friendly and more than willing to share thir experiences.

Last, I wanted to add that dha fish oil pills have been clinically proven to achieve longer remission periods. There is an article in this site about it, so supplements along witn a modified diet ( more fat) may help. I also give my son a multivitamin, one that contains magnesium and b12 vitamins. It won't hurt, it is said that those vitamins help the nervous system.

Also, levels of the medication on his blood need to rise to begin working. If he is still experiencing seizures, call your neurologist, they can up the dose if needed over the phone. Call them! there is no need to sit and watch him suffer. they can fix that. Most neuro offices have a nurse that can answer your questions and this site just lunches a help line, where you can call for information.

I hope all is well. I share your frustration, this is a scary situation to face out of the blue with no warning, and no one seems to want to give you any answers, perhaps because they have none. i have found a lot of support here and more answers and tips. Best wishes!

Re: 16 Year old Son just diagnosed with JME

Hi! A neurologist is good, but maybe you want to consider an epileptologist (if you can)? They specialize in seizures and seizures alone. Since I don't know what town or state you reside in, I've included a link with some more information. I would also like to point out that there's an app available for free for iPod touches, Iphones, and the like available from epilepsy.com. He can record his feelings and experiences with seizures and life on it. I would like to finally add that there's also a JME support group on facebook and an epilepsy support group for parents. https://www.facebook.com/groups/jme.epilepsy/ and https://www.facebook.com/groups/supportgroupforparents/