Hi, new here, brought 4yo to neurologist yesterday
 

I brought my 4yo son Anthony (5/9/03) to a pedi neurologist yesterday hoping to find out exactly what is going on with him. We knew he had Sensory Integration issues already (sensory seeker). She confirmed that, and says that he has definitely neurological impairment, the root of everything is neurological... (SID, hypotonia, oral motor, apraxia etc). Anyway she thinks he may be having seizure activity and he's having an EEG on Wednesday. If it comes back abnormal, then she said he needs to come in right away, I think for meds. If the EEG is normal, then she said he still has neurological impairment, just that you can't see on the EEG.

He has tics, which the school OT thought was stimming due to his sensory issues. The neuro says it is not stimming but tics. He had LOTS of eye blinking for 8 months or so and then stopped for a month or two. The blinking came back last week, along with a vocal tic. He also does something with his lips too but not as often as the constant blinking/vocal. She did not bring up Tourette's so I assumed it was not suspected. But now I'm starting to think that even if he is having seizures, he may still have Tourette. I can't really find info on kids with epilepsy having vocal tics. From researching his motor AND vocal tics, it sure looks like Tourette's. So now I am thinking that she didn't bring up Tourette just because it hasn't been a year yet... will be a year in about September (that he's had the blinking) and that is when she said to go back (if the EEG is normal, if it's abnormal he goes back sooner).

I am hoping the EEG is extremely reliable in diagnosing it? I mean, if he doesn't happen to have one during the EEG, then will his EEG come out as "normal"? I don't want it to be missed if he really does have it. I know they said he would be sedated during it. It might be both awake and sedated and I think they said it is for 2 hours total.

Can kids with Epilepsy can have vocal tics??? Are Sensory Integration problems common in kids with petit mal seizures? Are tics common??

Any advice/thoughts???

Thanks so much! :)

Dawn

((((((((((((Dawn)))))))))))))))) and (((((((((((((Anthony))))))))))))))).

I hate to say this, but no, I hate EEGs for the very reason that they [I]lack[I] accuracy in many cases and are not a particularly reliable diagnostic tool. They only pick up sz activity if it's occurring during the EEG. I have had normal readings during long periods of recurrent sz activity, and abnormal readings when I went without szs for years. Now, I'm talking about the "basic" 30-min EEG, but if he has a longer monitoring, such as 24-48 hour, or a video EEG, you may get more accurate results. If the "simple" EEG is normal, ask for a longer monitoring, or a V(ideo)EEG. Also, make sure a CT and/or MRI are done, too. It can help get to the bottom of what's going on.

Good luck!

LIZARD :)

Dawn
I think you are wise to consider all possibilities and certainly with eye blinking and a vocal tic, there may well be TS or a "transient tic disorder"..the latter being failry common in kids and caused by a variety of issues

my son manifest his tics around age 4 with eye rolling and blinking a a squeaking noise and we had all kinds of dx, ranging from possible brain damage to optic issues, but it wasnt until aged 10 that a savvy developmental pediatrician dx him correctly with TS

do stop by the TS forum here too if you would like some input from others on the tics aspect

all the best to you and I hope you find clear answers and effective treatment
Cheri

Dawn

I am sorry to read about your son and what you are going through. It must be scary at this moment. I dont know much about the symptoms that your son is having but I am happy that you found us and wanted to say welcome and give you a big hug :hug: . This a wonderful place with caring supportive people that really help in so many ways. I see you have met Cheri and Lizard who have some insights and thoughts for you.

Please let us know how Anthony manages the EEG. I'll be checking in for any updates,

Hi Dawn,
I'm so sorry to hear about the problems your son is having it does sound like TS but then I ask myself the question with all the rapid blinking of his eyes if maybe he isn't having a complex partial seizure (sz.) If I may ask does your son ever smack his lips, wander around the house, or pull at his clothing for no reason and then seem confused and tired after? If this is happening it is a complex partial sz. I have had both absence (petit mal) and complex partial sz. for 35 yrs.
I agree with everyone else an e.e.g. will not show any seizure activity unless your son is having a sz. in my case it didn't even show all the brain damage until I had a video e.e.g where the surgeon had to put 7 depth electrodes directly on my brain.
I saw many different neuro. over the yrs. but I never got much help until I saw an Epileptologist (Dr. specializing in Epilepsy) and I was sure to go to an Epilepsy Center which are often found at University Hospitals.
My advice to you is to have your son have an MRI, CT scan, along with a Pet and Spect scan this will really show what's going on in his brain. Take note if he has a lot of headaches, seems confused at times and isn't sure where he's at. This can happen to people who have cp sz. Keep your son away from anything with nutra sweet (aspartame) in it because it been proven that aspartame causes more electrical activity in the brain and can sometime cause sz. for people. Also take note if bright lights bother him and sometimes a low pressure coming in will cause some people to have seizures.
Here's a couple of websites to check out if your interested

www.epilepsy.com

http://www.neuropat.dote.hu/neurology.htm
Click on Epilepsy to get a lot of great info.

Here's wishing you and your son the best of luck and May God Bless You!

Sue

Thanks so much, everyone. I can tell this is a very supportive place! :) That is great!

He does do some type of lip smacking but not necessaily while walking around. I've seen him doing that while sitting down lots of times. This started a little over a week ago, along with the vocal tic and blinking (blinking returned, the others were new). I don't *think* that he gets tired. I think what the neuro suspects is the absence seizures, because she noted him staring off blankly in the office and when she called him, he didn't respond right away. I've seen him to that as well but he is only 4 and does seem a little spacy at times so I didn't think much of it.

I'm really on the fence about what it is.. seems like it could be the petit mal, but that doesn't really explain the vocal tic, does it? Unless he had both :eek:

Thanks for all the help!

Hi Dawn,
Thanks for sharing the info. with me. Often when I have a cp sz. I will smack my lips and sometimes I wander around. When I have an absence seizure I have a daydream look on my face and I stare for a few seconds but I wll continue to talk to others and walk around the house or work doing whatever I was doing ex. getting dinner I just don't remember anything it's like amnesia for a few seconds.
It's up to you but you might want to try putting your son on vitamin B12 or B complex vitamins. I found that taking vitamin B12 helps the nervous system and it has decreased my seizures greatly.
Also if you have an extra calendar around your house write down what time your son is having a sz. along with a descripition of the sz. by doing this the Dr. can often see a pattern as to what time of day or night he's more likely to have any sz. or what days of the month he will have more sz. A vocal tic can cause sz. I work in public school and I saw how a tic affected a student I had that caused the student to have seizures. I wish you and your son the best of luck and May God Bless You Both!

Sue

I tried to take some video, either by hiding the camera or pretending to play with the camera, telling him I was trying to fix it or something. If he thinks I'm taking pictures, he'll say "Cheese!" LOL

You can see blinking, lips, and when it's quiet enough (I have 3 kids in my house and a dog!) you can sometimes hear his vocal tic if you turn the speakers up. Here he is:

http://smg.photobucket.com/albums/v1...t=MVI_1274.flv

http://http://smg.photobucket.com/albums/v11/ives6797/?action=view&current=MVI_1277.flv

http://http://smg.photobucket.com/albums/v11/ives6797/?action=view&current=MVI_1278.flv

:confused: Any thoughts?? :hug:

Dawn

I just showed the videos to my friend and she pointed out that in teh middle video of him at the table, his eyes are rolling or something, when he opens his eyes sometimes they are in a different spot.... hmmm, wonder if that means anything?

http://smg.photobucket.com/albums/v1...t=MVI_1277.flv

Thank you for the reply! I have the videos on my camera, but the problem is it's like a 1" screen, they can't see anything on that. Maybe I can ask the pedi neurol if she has an email address I could send the link to. I won't see her at the EEG though. It's being done at a children's hospital and she has an office elsewhere.

Hi everyone. I just found this thread

I'm so glad that ives has somewhere to ask about the seizures investigations as that's not something either of my children have nor myself have although my son did have some tests when he was little to rule out seizure activity. I've been replying to ives on the TS forum.

There are lots of different eye tics. Eye rolling can actually be a tic. I'm not saying it is in her son's case 'cause I'm not a doctor, but just wanted to post a couple of lists of tics so that might help a little. There's a lot of overlap in many different conditions. It's not possible for me to say from looking at the videos. I just hope that ives can get this sorted out as soon as possible just in case they _are_ seizure because I know that's really important.

http://tourettenowwhat.tripod.com/al...cs.htm#TicList
List of common tics.
http://www.tourettesyndrome.net/Files/CommonTics.PDF
Common Tics
Those lists are just guides, they don't include all possible tics.
The interesting thing is that if you look through those lists of tics you'll find a lot that could also be part of a seizure disorder too.

I hope you don't mind I posted that, but there are so many different sorts of eye tics. Not everyone has the same tics.

Dawn

I am going to reply here as well as on TS in case others are following and will benefit from the answers you receive

I know very little about seizures and so honestly cant comment on that........
however, the eye blinking, eye rolling as well as the lip/tongue movement were all tics in my son, To the point where had you not had a doc suggest seizures, I would have looked at your son and thought "hmmm, that looks like TS or a tic disorder"

so again confirmation on how different things can sometimes manifest so similarly, and why professional dx is so very important

will post more on the TS forum

Thanks for the info, Lara. Yep, I'm on both forums trying to get this sorted out :)

I have a couple more questions to bother you all with, thanks so much any response, I truly appreciate it!!

I read something someone had written about her son, saying "he wasn't having seizures at the time, but WAS having lots of activity".....

Now, based on that, could my son be having *activity* during all this blinking etc? My hubby was saying because the blinking is so frequent, it can't be seizures-- he talks to us throughout all teh blining and seems to know what is going on etc. I see what he is saying but even said to him before, maybe it is activity. Then I read what the other mom said and thought maybe that could be right...? Maybe sometimes he does stare off for a couple seconds (absence seizures) and otherwise, in between is a lot of "activity"? If that sounds stupid, please excuse my ignorance, as I'm new to all this! ;)

Also, as far as sleep goes... he tics even when he is half asleep... barely awake but the noises stop the second he falls asleep. I do see some movements while sleeping but that could be normal in people that don't have tics, I think. He came into my bed a little while ago and went backt o sleep so I was watching him sleep. His hands, feet, and shoulders would twitch (not at the same time). Don't know if it's related to anything or not. I really didn't watch him that long, I got up and ran out here to post this!

eta: forgot another question... if he having activity, would that show on an EEG, or would it have to be an actual seizure? I don't know a lot about this.

Thanks Chemar, I hadn't seen your repsonse when I posted here before.

I was just watching my daughter sleep and she had some twicthing as well, and she has NO tics when awake. So I think what Anthony was doing could just be normal things that people do while sleeping.

Hi Dawn,
I know nothing about TS but from what you have discribed with Anthony jerking around a little it could be juvenille myoclonic seizures (jms) this type of sz. often happens to people with absence (petit mal) sz. Take note and notice if Anthony jerks around when he first goes to bed and when he first wakes up in the morning because this is the time it happens the most.
Also in regards to activity going on, the e.e.g. should pick it up because unless the activity is to deep in the brain. Often during my simple partial sz. I will see colors flashing back and forth in my eyes and have a nervous feeling in my stomach then it leads into a cp sz. for me. If your son is having any of that activity going on or smells odd odors then he's having a simple partial sz. (aura) sz. which is common in many people. Here's wishing you and your son well and May God Bless You!

Sue

ok, I called the ped neurol and asked if there's an email address and there isn't... BUT I just put those videos on a CD-R and I'm mailing them today so she can see. Hopefully she watches them :)

Hi Dawn,
You are playing it smart puting everything on a CD for the neuro to see. I wanted to let you know if you have any questions you can also call The Epilepsy Foundation of America at 1-800-332-1000 and they will give you info. over the phone or they can send it to you in the mail. Here's wishing only the best for Anthony and you May God Bless You Both!

Sue

Yikes, just found out for the EEG he has to be sleep deprived so he'll go to sleep easily at the hospital for the EEG. They said no more than 5 hours of sleep tonight! Then I have to drive him over an hour to the hospital while keeping him awake in the car :yikes: I'll keep my fingers crossed!

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.



:hug: :hug: :hug: :hug: and good luck...

LIZARD :mad: :(

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:hug:

Thanks, I'll try to call tomorrow and tell them I really need to know because I want to talk to his therapists at school, and his last day of summer services is Tuesday morning, so I'd really like to hear on Monday. If she actually went to the hospital this weekend to get the results then maybe she will know. How long does it take her to read the results and dictate them or whatever they do? If she got them this weekend, do you think she will be able to tell me tomorrow?

I'm on such pins and needles!!!! I'm going to find out today!!!! The dr FINALLY got herself over to the hospital over the weekend (it's been almost 2 weeks)!! I called and talked to the receptionist, who said the report wasn't there, hadn't been dictated, BUT said the dr wrote down that it was 'borderline' and the receptionist said therefore it probably wasn't considered 'normal'.

I'm guessing maybe we'll want to look into further testing, like 24 hour EEG??

I was afraid the EEG would miss soemthing because he really didn't have as much of the ticcing during that 30 min as he usually does. Maybe that's why it was only borderline??

I'll be back when I hear from the dr!

Well I talked to her...

She said she called it borderline because of some activity right before he fell asleep but thinks it is probably normal. Something about Vertex activity that is normal during sleep, this was right before he fell asleep.

She thinks it is Tourette, I asked her outright and she said that she does think that's it. :( :Sigh:

Not that I like second guessing doctors. But I'd look into getting a second opinion. I also think a 24-48 VEEG would be ideal for your son.

I'm so sorry you have to go through this, it's hard enough to deal with as it is, but then to be forced into waiting and waiting must be extremely frustrating. I hope you get clear answers soon. :)

Hi Dawn,
I'm happy to hear that you finally got the info. you've been waiting for from the neuro. I agree with Ellie that you might want to get a 2nd opinion and have a veeg done. They found much more detail regarding my sz. and the areas of my brain causing the sz. when they did a veeg. Here's wishing you and the family well. May God Bless All of You!

Sue