I'm just reading this thread for the first time, and wanted to say that when my daughter presented with seizures (at age twelve, but looking back we believe she was having seizures since age 3-4, we just didn't know what we were looking at..at age 12 her seizure symptoms became more pronounced).... she also had both motor and verbal tics. The neurologist was never clear whether he felt these were part of the seizure activity or not... but she had facial grimace tics, heavy blinking of eyes tics, head to shoulder tics, and some vocal tics as well. Thankfully, her seizures were confirmed on several occasion during EEG.. so we knew that much for sure.

She also had what seemed to be a mild dystonia, where she would arch and twist her back uncontrollably...sometimes right out of a chair. The neurologist had no explanation for that. She had a lot of muscle spasms in her back during this time.

As for her seizure types, the 'worst' looked like passing out with rolled back eyes and mild jerking after. She also wandered, staggered, acted drunk, had confused speech, lip smacked, rolled on the ground giggling, chewed her tongue, had blank stares, hungry spells, tickling in her stomach, phantom odors, visual disturbances and more during her six to twelve months of seizures. I think that pretty much includes everything but tonic clonic. The neurologist would only classify them as generalized, but in the end felt there may have been a focal point, with secondary generalization.

She did initially gain seizure control on Depakote over about six months time, but responded most noticibly when we added vitamins (B6 and magnesium, multivitamin). In the long run, we discovered she was B6 deficient, and believe this to be the primary reason for her seizures. She is also gluten sensitive, but remains seizure free even though she is not on a gluten free diet (now age 20). She has been off medication and seizure free for over five years now.

Her sister had symptoms of gluten ataxia prior to a gluten free diet, and all of her symptoms resolved on a gluten free diet. (staggering episodes, slurred speech, drooping eyelids, periods of limp body fatigue, leg weakness/drag). She also had significant GI symptoms and skin symptoms..all resolved. SHe has been on a strict gluten free for over five years now.

So, I hope you will read about gluten sensitivity/celiac disease and its many diverse neurological manifestations... as it associated with a wide variety of neurological problems... including SID, hypotonia, oral motor, apraxia , seizures, tics, learning and motor delays, ADHD, and more.

You can check The Gluten File below my name for much more information, and scan the right bar for the topics that might pertain. There is diagnostic testing available, and that is also explained in The Gluten File.

Cara

Hi Dawn,
I wish you the best with the sleep deprived e.e.g. I've had to have them before and it's hard to stay awake but take my word it sure shows a lot more detail than a regular e.e.g. ever has for me.
Cara is correct regarding being on a gluten free diet. I know if I have to many foods that have gluten I end up having a sz. the next day.
I wish you and your son the best of luck with the e.e.g. and May God Bless You Both!

Sue

Thanks so much everyone

I'm still waiting to hear about the EEG but I am getting really nervous that she'll say it is "normal" and I'll worry that there could be something there that was just missed, since it is common for that to happen in the short EEG's. He was there from abouit 10:00 to 11:15, which included getting everything on his head, talking, and getting everything off of his head, so they did probably 30 min awake and 30 min asleep at the most. They did do the flashing light over him and the blowing, though I'm not sure he blew steady enough for it to matter (he has oral motor issues and blowing is harder for him). I've read that for the flashing light thing, you're eyes are supposed to be closed and his were open, I don't remember them saying anything about closing them at the EEG. Hopefully that won't matter? My mom went with me and said she doesn't think Anthony has seizures because he smiled during the flashing lights (might have been only part of the time, not sure). She said since he liked it, he couldn't have epilepsy. Not sure that that is true though. There could've still been activity in his brain... possibly? Any thoughts on any of this? I really appreciate any and all thoughts you all have about my son. You've all been so helpful.

If it comes back as "normal" I really would like to ask for a 24 hour EEG so I can feel more confident about it but I'm afraid the dr will say just to trust this test because the flashing light etc would have brought something out if it was going to happen, know what I mean? I don't want her to think that I don't trust her and sound like I am second guessing her, I hear she is a very good dr.

btw, I put my son down for a nap a little while ago and he was doing some twiching, not long after he fell asleep. Not sure if that is normal or not though-- it may be perfectly normal rather than JMS? I have no idea.

I called the pedi neurol office to check in... but the receptionist said "we don't have those results yet".

hmmmm

I told her they said to call back in 5 days and that the dr usually goes there on the weekends. She said something about how the results have to be dictated. ??

argh.

So now I don't know if that means she hasn't even gone to the hospital to GET them yet, meaning they LITERALLY don't have them yet???? or if she has them but hasn't FINISHED preparing a report yet....???? I asked "so you have no idea how much longer it will be?" and she said it shouldn't be too long. Not sure what that means though.

Waiting is really hard!

Hi Dawn,
Waiting can be terrible at times. I've found I get better luck asking to speak to the Dr. immediately because a good amount of time the receptionist never get info. to the Dr. that people want to know test results. If you don't hear anything in another day or two continue to call the Dr. until they give you the report. They don't like it when patients call day after day. I found it gets them moving faster. Here's wishing you well and May God Bless You and the Family!

Sue

Hi, sorry it took me so long to post here (I was out of town, and then got sick).

I'm so sorry to hear you've been going through all of this with your son (who is as cute as a button, by the way).

It sounds like you're on the road to Testville!

Waiting for EEG/VEEG's to be dictated can be a pain in the butt. But look at it this way, if they came back right away I'd be worried they didn't spend enough time reading them and being thorough.

Usually when you hear that said, they do have the results and are reading them then 'writing' up the results (in short terms).

Also, regarding your mothers comments:

"My mom went with me and said she doesn't think Anthony has seizures because he smiled during the flashing lights (might have been only part of the time, not sure). She said since he liked it, he couldn't have epilepsy."

With all due respect to your mother, that's downright silly. Hehe. There are a lot of things I like that happen to be common seizure triggers. Normally on my EEG's it will indicate I am photosensitive, although it would really take a lot to trigger that for me (as I am typically not in a dark room with strobe lights flashing in my face). He could very well have even a mild buildup during the strobe test and still be happy. He's a little boy, and if he is having seizure activity he probably isn't aware of any triggers - and will see fun things as such, fun! Flashing lights, fireworks and all of that stuff is typically fun for children, fun for me, too.

Caffeine can trigger seizures for some people, and I drink enough coffee each day to keep a horse awake for a month. Things that are triggers for me, however, don't make me panic or cower in fear of them. In some cases, I'm irresponsible enough to even check them out (like going to movie theaters, 9 out of 10 times a seizure will follow once I get home). I think if my Neurologist/Epileptologist knew how many times I rode Space Mountain at Disneyland they'd probably give me an epic verbal lashing (rollercoaster in a dark setting with various colored flashing lights).

[Disclaimer: Don't follow my suit, sometimes I have naughty breakdowns where I just want to have fun. I do this once a year for my own sanity but never ever recommend doing what your doctor says not to!!]

Anyway!

I watched the videos and have personally not ever seen tics/sz activity like that. I've witnessed a lot of activity somewhat like that but with absence seizures and the child in question was very much more unaware (would not respond to parents speaking, loud noises, etc.) and then would 'snap' back into a more aware state.


Please keep us updated and let us know as soon as you hear something.

Best of luck to you and your family.

I'm growing more and more impatient. Anthony's EEG was over a week ago and still NOTHING. I just want to know what is wrong with my kid!!!!!

I've tried to stay by the phone for the last week, because I don't want to miss her call. I figured she would call yesterday because I was unreachable for most of the day... back at the children's hospital, with Jayson this time. He had to be put under anesthesia to have an endoscopy done by his gastroenterologist from his severe reflux. (he said everything looked good and will call us Friday with the results of the biopsies). Anyway, surprise surprise, she didn't call.

AND NOW, I just called the neuro's office (the one that told me to call her when the EEG was done because she wanted to get the results right away) and the secretary said "SHE HASN'T GOTTEN OVER THERE TO READ THEM YET, HOPEFULLY SHE'LL HAVE A CHANCE TO GO OVER THERE THIS WEEKEND"

She said they'll call when they know something. I'm really NOT happy about this!!!! There is nothing I can even do but sit around and WAIT by the phone for even longer. This really makes me PO'ed. Even when she finally gets her butt in gear and goes to the hospital, it will still take more time for the results to be dictated or whatever it is they do. I wanted to tell Anthony's therapists what was going on so we can revise his IEP and Tuesday will be his last day of summer services until school starts in the fall. PLUS, we are LEAVING for vacation the end of next week and will be out of state.

The hospital told me when they did the EEG to call my dr in FIVE DAYS for the results, but that my dr is supposedly faster than that so we would know before the 5 days. YEAH RIGHT!!!

Call them and insist on waiting on the phone until they have looked at it, or better yet, if you're close by, head on over there. Make an @$$ of yourself! Sad to say, that's often the only way to get anything done anymore.



and good luck...

LIZARD

I wish it would help... BUT from what the secretary said this morning, the dr has not even gone over to the hospital to get the results, so she doesn't have them at the office

ives,

I would do as LIZARD said. When our kids are in a spot like this we are walking on pins and needles and that is no way to go on a trip. One time I was seeing a neuro and every time I went for the appointment I would end up waiting at least 2 hours (because the secretary would book three to four patients at the same time). How I finding got through to them was (since I was a college student)going there one time and spread all my books around, beleive me I got in to see him fast. From then on I always got in pretty fast. Maybe they are not giving you the hold truth. My prayers are with you.

Darlene