looking for answers

[cupacoffee]

Hi everyone,
My 16y/0 had 2 tonic clonic seizures. She then started having many myoclonic jerks of her arms and shoulders. Her first 24hr eeg was abnormal and she started meds. The myoclonic jerks have increased 10 fold and we changed docs. He added keppra but she started having more jerks and what is described as absence and partial complex seizures. Now another 24hr eeg no seizure activity was picked up ,I was there and don't understand why theses aren't showing up. a veeg picked up all the myoclonic jerks on video but not on the eeg.
Anyone there that might have some answers PLEASE

 

[golfhead]

my daughters test were the same.. but she has very mild c. p. on her left side. she has a very tiny pin hole in her front lob. dr, say thats were her ep. comes from?..shes had grand mal,s for about 2yrs.. about 2 a month with taking keppra. hope its a little help . gl and god bless.

 

[Nakamova]

Hi cupacoffee --

As a number of CWE members can attest, not everyone with epilepsy has their seizures show up on EEGs. Often times the seizures originate too deep in the brain for EEGs to pick up them up.

I'm sorry your daughter's seizures are increasing. Does she keep a seizure diary? Sometimes that can help with identifying particular triggers.

Best,
Nakamova

 

[PhylisFeinerJohnson]

An abnormal EEG does not diagnose epilepsy nor does a normal EEG reading exclude it.

I agree with Nakamova, keeping a daily seizure diary would be very helpful, for her, you and the doc.

Write down her sleep patterns...what she eats and when...daily activities (including stresses or drastic changes)...note when she has seizures (triggers? auras?)...how she feels after the seizure...plus the duration.

I hope this helps...

 

[Endless]

Hi, Cupacoffee,

Welcome!

I understand how stressful it is to have a child who is sick, let alone with something as confusing and life-impacting as seizures.

If it were partial seizures I say that it is really common to have them not show up on an EEG. A partial seizure is a seizure that only involves part of the brain. It can be happening so deep in the brain it can't be picked up.

Myclonic seizures are generalized seizures, and involve the whole brain. Generalized seizures are almost always picked up by an EEG. Here's a link to a list of types of seizures: http://www.epilepsy.com/epilepsy/types_seizures
There are actually over 40 kinds of seizures. The above has a list of the most common.

If abnormal waves were picked up once and not again, it could be due to differences in who read the EEG and their levels of skill. It could be that both times should have shown abnormal activity, or neither time should have shown abnormal activity. I'd get a second opinion on both readings. The issue could be as simple as doctor error.

When seizures aren't picked up by an EEG, there is always the possibility that something physical is causing the seizures. Has she had a full work up for every possible cause? A full blood panel, cardiac screening, neurological screening (other than for epilepsy), a review of her medications for the side effect of seizures, etc.?

It is very unlikely that my problem is her problem (1 in 100,000), but after 30 years of pain and problems, and a year of epilepsy treatment, the neurologists have finally found out that a disease that causes elevated Cerebral Spinal Fluid pressure in the brain may be the root cause of my seizures. (Idiopathic Intracranial Hypertension)

So, if it were my daughter, I'd do tons of research on the internet, make a list of possible culprits, and make sure she is tested for every possible thing. That is, if you have insurance. If you do not have insurance this may not be feasible.

Good luck. Will you let us know how she is doing?

 

[didoka]

Sounds like your daughter has JME (Juvenile Myoclonic Epilepsy, also known as Janz Syndrome). JME belongs to the generalized forms of Epilepsy (like Grand Mals and Absence seizures). My question to you: What other medication is she taking besides the Keppra? When does she start having the twitches? In the morning? It is not uncommon for JME to also present with Grand Mal seizures. (some patients start jerking after awakening in the morning and go into a grand mal shortly after)

You know, the very first step in finding the right medication for her would be trying to sort out those seizures. You mention she also shows Complex Partial seizures, I would make sure that is the case, giving medication to treat partial seizures to a patient with generalized seizures, could lead to an increase of her generalized seizures. Keppra is usually given to patients with JME, but also Lamotrigine, Topiramate. Carbamazepine however, may increase seizures and also leads to absence seizures.

Well, as for the EEG results, it is quite common that an EEG does not pick up seizure activity, which makes it even more important to document what is happening with your daughter, when, for how long etc. Keeping a seizure calendar is a good idea, maybe the neuro can see a pattern, you don't see.

 

[cupacoffee]

Olivia did have a tonic clonic on eeg and veeg. I was so happy because that day the doc said the myoclonic jerks do not show on eeg and he was questioning her original diagnosis. Now we are on the same epilepsy page but what about the myoclonic jerks. they are severe upon waking and increase in the evening. shr went from sleeping 20hrs a day on keppra and topamax to not being able to sleep much on lamictal. which is still better than where we were. I was wondering if maybe there is a secondary movement disorder. She had 50 jerks in 50 seconds last evening and couldn,t speak clearly afterwards. I would like to find a neuro who will listen to us and answer my questions. I have quickly learned alot of my questions are unanswerable. we were at jme but the gran mal she had makes her a mixed bag of seizures and the neuro has no answers except that the myoclonic jerks may not be epileptic. I asked him if it were possible the jerks come from deep in the brain and by the time they reach the surface of the skull they are not picked up by eeg. Only after she actually had a big seizure did he say it is possible.thanks for your input

 

[didoka]

Is Olivia currently treated by a pediatric neurologist, have you consulted a epileptologist, or is there a way to get her into an epilepsy center?

It is really important for treatment to find out what exactly is going on. Of course she could have a secondary movement disorder, a mixed seizure type is of course possible too, but as I said, with JME it's mostly jerks and often the patient has grand mal seizures as well.

Did she start the jerks after starting on meds or before? If after, it could be the medication itself.

In that case I would really try to get into an epilepsy center, especially since you already been through quite some medication options. JME is not that easy to treat, it takes some time to find the right combination of medication. Please make sure that she takes her meds exactly as prescribed (mine has got to have it ever 12 hours +/- 30 minutes, or else we are in trouble), has she taken brand name first and then was switched to a generic? As you can see, there are many things to consider.

Best of Luck
Diana

 

[cupacoffee]

Dear Diana,
She is seeing an epileptologist. themyoclonic jerks started just before her first seizure in september but increased 10 fold once she started meds in december. She started on name brands and we have stuck to them. I am thinking of nyu next if I cannot get the support I feel we should get from our epileptologist. Am I wrong in thinking that my questions should be answered no matter how trivial or unanswerable they are. This is my child we are talking about she is not just another number to me and I want a doctor who can appreciate that.
I want to thank you so much for your feedback and letting me vent.
Chris

 

[didoka]

Hi Chris,

nope, you are absolutely right, just follow your gut. I have been running from neuro to neuro. My son is currently on 4 different meds and nothing works, so my next stop is UNC. (just for further testing, long term EEG and hopefully they do another MRI) Just hang in there, sometimes it takes a while to find the right combination.

Have a great weekend
Diana

 

[Colts mom]

All of your questions and conversations are helpful for sure. My 11 y.o son is in a behavior modification program halfway across the country. We had his E fairly well controlled before he left with high levels of Depakote, Lamictal and Keppra. He has been gone a month but since last friday (a week ago) he has been hospitalized 3 times, 3 days on the last set. For back to back grand malls. I think it is stress, elevation maybe and exhaustion. But don't know for sure. I have not had alot of experience in this type of web site but am finding it very helpful. There is an epilepsy center in the city where he is, but they have not yet returned a phone call to the program coordinator. (And I have only left voicemail over the weekend.) Is the center where epileptologists are? Do the centers actually treat epileptics? It sounded like that may be the case in this forum. Since he has been in the hospital both his previous treating pediatric neurologist and the one in the new city are both on vacation for the next two weeks!!! I am worried because if they can't get the one and only other pediatric neurologist nearby on board immediately they will transport him to another part of that state. It's all very scary. I want to find him help and I'm trying to do it from so far away!

 

[kostareyna]

Hi everyone,
My 16y/0 had 2 tonic clonic seizures. She then started having many myoclonic jerks of her arms and shoulders. Her first 24hr eeg was abnormal and she started meds. The myoclonic jerks have increased 10 fold and we changed docs. He added keppra but she started having more jerks and what is described as absence and partial complex seizures. Now another 24hr eeg no seizure activity was picked up ,I was there and don't understand why theses aren't showing up. a veeg picked up all the myoclonic jerks on video but not on the eeg.
Anyone there that might have some answers PLEASE

As i understood myoclonic jerks just like any other seizure type have specific signs on eeg,the only reason it wasn't seen is probebly because it comes deep from inside the brain.I have myoclonic jerks as well but moving your hands and legs will look on eeg like normla muscle movments unless it has special proxismal patterns or spiked patterns that are occuring in while having the myoclonic jerks.

P.S=I read you other posts on this thread,i have JME and i want to make it clear that its not myoclonic jerks only.Usually people with JME have myoclonic jerks,grand mals and sometimes absences.They have the seizures typically in the morning or after waking up and sometimes in the evening when tired,some are also photosensetive.I have only myoclonic jerks,i got lucky on that part but im photosensetive which sucks.

As for treatment usually it is well controlled and is doesn't effect the intellegence of a person having it.
Altough alot of meds like depakote and lamictal which usually help din't work at all for me or made it worse keppra did make a change for me in a good way.

Anyway by the describing of your daughter's seizures it looks like JME not complex partial epilepsy which is more like robotic movments as i understood and no responsivness during them at all.

And just so you know,Lamictal can aggravate myoclonic seizures in some cases and make much more jerks and unesecery movments which wouldn't happen if you'd be without the lamictal.

Hope i helped with that info