my 31 month old has myoclonic epilepsy and I am scared

[lco120]

On Dec 26 2012 my 31 month old son had a grand mal seizure, full on body convulsions, etc. We took him to the ER, he came out of it fine, back to normal. He had a virus the following day which could have been the cause, hard to say. He didn't have a fever at the time, so the seizure wasn't technically a febrile seizure, they classified it as a unprovoked seizure. It was the scariest thing I have ever seen.

We saw a neurologist at Children's Hospital of Philadelphia and had an EEG done. The EEG showed some bilateral slowing which was not overly concerning so we went away hoping for the best and never to see it again. They said the slowing could be because the EEG was done soon after the seizure. We wanted a perfect EEG, but we didn't get one. Hard to grapple with that as you can imagine but the docs were not too concerned since it was his first seizure and he was developmentally on track.

Fast forward a couple weeks and on Jan 21 we started noticing his eyes involuntarily roll upwards for a second or two. It was easy to miss. Daycare didn't notice it but my husband and I did. He was perfectly fine in every single other way. We knew it wasn't him being funny or doing it on purpose. We kept a diary.

It continued through the week a few times a day (that we saw). I called the Neurologist and scheduled a follow up and another EEG for Feb 4th. On the 6th day (this past Sunday Jan 27) the eye thing became more frequent and we noticed some jaw motions, all involuntary and very quick - all could have been just odd toddler behavior if you saw it, but we knew something was up. Once on Sunday we saw it happen while he was standing in his crib and he cried a little after and then laid down. It wasn't right. So we took him to CHOP ER.

At CHOP they hooked him up to a video EEG to watch him in the room and his brain on the computer. We were given a button to push every time we say the eye things. We clicked it a few times. He was hooked up for about 10 hours.

Monday morning we saw the neurologist and they said he was having seizure activity (a few times, not constantly and it did correlate with our button pushing). After they reviewed the EEG, they gave us the diagnosis of Generalized Myoclonic Epilespy. We were discharged on Monday afternoon. We started him on medicine on Monday night - twice a day, started with a very low dose. The name of the drug is Levetiracetam, brand name is Keppra. We are on the generic, liquid form.

I am joining this community to connect with other parents. I am so scared for my son, I am a nervous wreck.

I've seen the seizures the past two days, I just don't know when the medicine will kick in, if it ever will. I am fearful that his development will be affected, like one day I'll wake up and he won't talk to me.

Thank you to anyone who wants to share their experiences, fears and hopes with me. I do appreciate it very much.

 

[Nakamova]

Hi lco120, welcome.

I'm so sorry -- it must be tough to see your son and worry about the seizures and the meds. I think it's particularly hard when the diagnosis is new, and there's so much to process. But it's great that you've found CWE -- the members are really terrific and supportive. I hope you feel free to explore the forums and ask questions. A useful place to start is here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

You might want to keep a diary (if you don't already) that tracks your son's seizures/symptoms along with any general observations about his health and behavior. This can help in gauging how effective the medication is and whether there are side effects. It can also help look for possible triggers -- things like dietary allergies or sensitivities, environmental stressors, fatigue. etc. And the diary can be handy when you are working with your son's neurologist.

Medication is tricky. It may take at least a week before you see results form the Keppra. Generally, it can take a fair amount of trial-and-error to find the right medication at the right dose. For this reason, don't be afraid to be contact the neurologist if the Keppra doesn't seem right -- if it's not controlling the seizures, or if it has problematic side effects. And if you're uncomfortable with the meds, it's possible that a dietary approach might help. More info about that here: http://www.hopkinschildrens.org/Modified-Atkins-Diet-Treats-Childhood-Seizures.aspx and here: http://epilepsymoms.com/blog/special-diets-nutrition/atkins-seizures-guide-parents-parents.html

I hope you and your son start to feel better soon.

Best,
Nakamova

 

[sazzy]

Hello, Just wanted to let you know that my daughter (10 months old; partials with secondary generalized tonic clonic seizures) had good seizure control on keppra (except when ill with fever). The dose had to be increased a few times until it reached a "therapeutic dose". I too fear for regression of her development and I go through a mental check list every day of what she still can do... So far so good! We have been dealing with seizures for 6 months now and I can't believe it when I say that it really is easier now then in the beginning. I am no longer terrified of the seizures, just heartbroken. We are mama bears and we can get through this! Remember, it DOES get better. Chin up!

 

[lco120]

thank you for sharing, I will keep positive and on top of things for sure. I realize it is sooo early in the process, I have to remind myself of that. Very glad to hear you and your little one are coping OK. I remember 10 months well, cute age! It just gets better and better.

 

[LisaBee]

I know how you feel. My daughter was diagnosed over the summer and I was a wreck. Couldnt eat, sleep, cried all the time, scared to leave her for a second. Please trust me when I tell you that it will be ok. It takes time. Hang in there.

 

[lco120]

Thank you LisaBee, it's great to hear that it will get better. If you have a minute and wouldn't mind sharing your story, I am all ears. Thanks again.

 

[LisaBee]

My daughter, 11, started doing strange things in her sleep. At first I thought she was just having weird dreams but I noticed a pattern. Within the first 45 minutes of her sleeping they would start. Her eyes would open and sometimes twitch, she would mumble, make hand motions, her one foot would stiffen. I took her to a Neuro, who assured me they were Parasomnias, like sleepwalking and talking. It didnt sit right with me so I started to record them. Then one morning while sleeping she had a Grand mal seizure. I knew they were connected and no one would listen to me. I changed Neuros and after a few tests they confirmed sizure activity. She had seizures every night in her sleep for over 6 months before a Dr or a med helped. I was going crazy searching for answers and reassurance that my child would be ok. Never been so scared in my life. I wished I could take her place. She hasnt had one for a few months now, thank the lord.

 

[donnajane]

Hi and Welcome. I have a 2yr old who as different types of events. He was first rushed to the ED at just over 7 months old and at one point having 150 smaller event's a day, origianlly a nureologist thought it was Shudder sydrome. He's had 5 EEG's 4 clear other than his eye's going up with the flashing lights but little change on the EEG on his 5th he had the same eye reaction but they also found he had a slowing on the back right side of his brain. Once the large amount of smaller event's stopped his development caught up. At 18months old his new Nureo ordered another MRI and found he had a lesion on his putamen which is deep inside his brain which is why the EEG's did not pick it up. He is currenlty on Tegretol twice a day which has opened a door in his brain which was closed before and he is now able to fully interact with others around him. He still has small event's or blips as I like to call them most days and some stange periods (sometimes up to 24hrs) where he can regress and forget how to walk etc, some bigger events but his beautifal smile melts your heart and makes you feel things will be OK.
He has a team of specialists looking into if they can work out what is happening with him and then how to control it more.
I know at the start it was the scariest thing and being in hospital with him away from my 3 and 5yr old was horrible. I had a hosptial bag packed "just in case" I didn't un pack it until he was 20months old but a few days ago repacked it as his specialist have asked me to bring him to the ED when he is having his next longer regression period so they are able to run a lot of tests on him while he is in this state. She has given me a referal form to hand to the ED so they know the tests have to be done as soon as he see's the triage nurse. Just having this piece of paper has given me a bit more confidence re taking him to the ED and not having them think I am an over reacting mum.
This forum has given me an amazing amount of support for unless you are living this or gone through it I don't really think you can quite understand what it's like to constantly be wondering "what is comming next" especially when your child is to young or unable to tell you.
Donna

 

[KarenB]

Keppra is the drug of choice for myoclonic seizures. It doesn't cause the cognitive problems that many other seizure meds can. And it's easier on the body, so the dose can be raised to fairly high levels. However, the downside of Keppra is usually emotional issues -- like depression, anxiety, aggression, bad temper.

Our son was put on Keppra when he was 18 months old (he was having grand mal seizures). We didn't realize how depressed he was until he was weaned off 6 months later (it wasn't working for him). Then, he started smiling and laughing all the time. The same thing happened recently, when his doctor (the same one who'd weaned him off of it 7 years ago at age 2) decided to give it a try again (once again it didn't work, and this time we saw a lot of aggression and hyperactivity in addition to depression). Just weaned off for the second time -- this time we had a number of "weaning" seizures, but he's been much better now that it's out of his system.

Anyway, here's hoping the Keppra works for you without the bad side effects. As I mentioned, it does have a good track record with myoclonic seizures.

Might also want to give the Ketogenic diet a try.

 

[lco120]

thank you

Hi Karen, thank you for taking the time to respond. We hope to have good luck with Keppra but I am cautiously optimistic.

It has only been 10 days so I know it is very very very early on our journey. I am trying to take one day at a time.

So far it's been hard to distinguish between normal toddler behavor and what could be a side effect.

We'll keep on moving forward hoping for the best. Have a nice weekend.

Lara

 

[KarenB]

Yes, with children that age, they tend to have mood swings and temper tantrums and all that sort of thing anyway.

That's why we didn't really realize the impact the Keppra was having on Jonathan until he was weaned off at age 2.

 

[jtdds]

I'm a strong believer in Magnesium. I too developed a myoclonic seizure secondary to Brain surgery in 1978 (pre-CT and MRI). It took 2 more ops in Montreal in 1982 to bring them in control. The symptoms, though much milder, persisted until 2011 when I had a huge Grand Mal secondary to Vitamin D toxicity brought on by heroics of my former neuro to "make my bones strong in case I fall" . That was when I discovered Magnesium. Long story but myoclonic jerking finally 100% cured. Shame on field of Neurology if they don't promote Magnesium in addition to usual meds.

 

[jimj]

I'm a strong believer in Magnesium.

What brand and dose of magnesium do you use?

 

[jtdds]

Brand of Magnesium

What brand and dose of magnesium do you use?

The company that markets Magnesium products is irrelevant because Magnesium is an element from the Periodic Table which means it has no alternative forms per se. I'm guessing your inquiry is into which FORM of Magnesium I use. The answer is that I take Magnesium Sulfate in the form of Epsom Salt. However, Magnesium Oxide in over the counter tablets is was what I took initially and had remarkable results! I have also used a liquid form (Magnesium Chloride?...could be Magnesium Hydride?) known as Angstrom Magnesium 9000 I bought on line from Health Shop 101. Go to Dr. Carolyn Dean's web site to read about liquid magnesium. Personally don't think you need it as a maintenance dose. It is very expensive and bitter but is perhaps the best absorbed and will get your blood levels up a lot sooner. Currently I crush Epsom Salt into a very fine powder and put it into size 00 gel ceps which I buy on line from Capsule King. Three or four of those is roughly a 1/2 tsp. which seems to be the magic dose. By far, this is the cheapest and most concentrated form. Unless I crush it up, straight Epsom salt is ruthless and will give you diarrhea which is a sign that it is being poorly absorbed. If you want to know about fillers, preservatives and dyes then I have no information to offer in that regard. Personally I've used products made by Nature Made. Over the last two years of taking Magnesium, I have unscientifically settled on 1,000-1,200 mg per day but I am a 200 lb male and don't have kidney problems. From my travels on the Internet, that amount seems to be an average target dose. People swear by it.

If I were giving advice to an adult with otherwise healthy kidneys, I wouldn't hesitate to tell them to embark on 1/2 tsp Epsom Salt per day. It seems that here's a lot of opinions that that taking too much Magnesium is never a problem because a person with healthy kidneys will just excrete the overage. It may take 50-100 times the RDA of Magnesium to control seizures. It can be mixed in orange juice but will still be very bitter which is why I make gel caps. In a small child, I would look into Magnesium oils (Magnesium Chloride?) to rub into their skin or to include in their bath water. My advice is three-fold. 1) Do a ton of research on line. As with most things, you can put any twist you want on it and come up with some useful information. 2) Because it's a baby we're talking about, don't take my advice until you let the doctor know your intentions to therefore address kidney problems. 3) Keep taking any prescriptions as ordered by your doctor and be ready for them to think you're out of your mind. They know some level Magnesium going to work to help control seizures as it does in Eclampsia and migraines but it's out of their comfort zone when used in seizures for some reason.

 

[Nakamova]

Magnesium citrate is absorbed better than magnesium oxide, so you might want to go that route. (I take Thorne magnesium citrate tablets). Generally, if your dose of magnesium is too high, you'll know because it will give you the runs. That's a reliable sign that you need to try a smaller dose.