Hi, new here.. brought my 4yo son to pedi 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).

From what I've read, the tics seems to pretty much be textbook Tourette's so far...? Any advice/thoughts???

Thanks so much! :)

Dawn

Hi Dawn,

Welcome :) !

Unfortunately, it does take time to sort this all out. Peds often don't diagnose TS in younger children.

Does anyone in your family or his dad's family have TS/tics? Can you think of anything which happened last fall to trigger these?

I think it's fine to bring up TS with the neurologist and see what she/he says. It's tough when there are multiple neuro symptoms to figure it all out as there is overlap.

Others may have thoughts and ideas.

Take care,
Tessa

Hi Tessa, thanks for the reply! :)

There is no TS in our families that we know of, but my mom comes from a very large family and there are many many cousins/aunts/uncles I do not know. I also don't know much about my hubby's family history either. Most of his grandparents all died when he was very young (all but one who died later, she had Dementia).

I do have one cousin with NF but doubt that's related to either seizures or TS.

All the best for the EEG on Wednesday! That'll be good to have out of the way and hopefully all will be just fine with the results.

Does the school OT think your son is on autism spectrum?

My son has TS and is also on Autism Spectrum. I have read in the past somewhere of vocal tics and seizures, but I'd have to go hunting for that info..

There are other conditions besides tics ... your message reminded me of something Dr. Freeman has written about on his blog about Stereotypic Movement Disorder which can be confused with tics and with stereotypies. He describes the movements quite well below. When the situation is complex, it's often necessary to rule out other conditions. Unfortunately that can take time.

http://www.tourette-confusion.blogspot.com/

Thanks so much, Lara.

The school OT said he does not come across as being on the spectrum because he has eye contact, but since he does have some possible symptoms (like only parallel play at school) I wanted him to be evaluated. That's actually why I brought him to the neurologist, my pediatrician recommended her so we could get to the bottom of what's going on, whether he was on teh spectrum or whatever it is, and he was right because it looks like that's who we needed to see.

Pleased to see you over here, Dawn :)

I dont know if you have had a chance to look at our useful websites sticky thread, but for a balanced overview of Tourette Syndrome, I find the site by Leslie Packer to be really good
http://www.tourettesyndrome.net

As I mentioned to you on the Epilepsy forum, so often kids get misdiagnosed so my very best advice to you is to take it one day at a time, and just keep educating yourself the way you are. Then hopefully you will be able to present your observations and info to a doctor who will have the experience and insight to give you a correct dx and effective treatment options

one thing is for sure...whatever the cause of what your child is experiencing, it is so good that you have found a support group here at NT :grouphug:

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

http://smg.photobucket.com/albums/v1...t=MVI_1278.flv

:confused: Any thoughts?? :hug:

Dawn

eta: hmmm, thanks Lara... oops I see what you mean! Sorry! They should be fixed now, I think.

Hi there.
I'm just trying to get them to load now. I'm on dial-up unfortunately at the moment so it takes a while for me.

I fixed your links. You might like to edit your post to show the working links and then I can take them out of my post. That way you'll always have the ability to have them removed at a later date if you don't want them on the internet. Hope that makes sense. I've made these special urls. They won't work the way i've got them posted here but if you copy them into your post they'll work fine.

[done]

I haven't seen them all yet, but he's certainly got what appears to be a bit of an eye blinking tic happening there.

I was thinking about your Neuro not bringing up Tourette's at this time. There were a couple of children in my son's year 1 class who had transient tics. Transient motor tics are actually pretty common in preschool and elementary school children and they usually only last for a very short time and go away completely. I remember learning something about that when i was looking for info. about my son years ago. Had something to do with rapid brain development at that particular age. Tics are not uncommon for some children who are on autism spectrum either you know.

Having said all that, it sounds as if you have a good Neurologist and that she's being cautious and careful and thorough. Can't beat that! It's tricky getting it all sorted out sometimes when there are other things going on, e.g. the Sensory issues and other things.

I hope the EEG goes well. Not long to wait for that. You also have other children which as strange as it sounds probably can help you sort out a few things about your son especially if he's the youngest and you'll have already observed how the other children played and developed. At this point in time I'd wait to see how the EEG goes and then if you're worried about more than tics, then it'd be wise to look into evaluation for developmental disorders of childhood which might involve more than one person.

He looks as if he's a lovely, happy, little boy. It'll all get sorted out soon, Dawn. Hang in there and don't worry too much. You have a good doctor taking care of him by the sound of it too. :hug:

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

I saw that, ives.
It's very difficult to be able to say really.
My first impression was that when he was sucking on the bottle he was feeling comfy and sleepy like little children do when they're doing that. His eyes are blinking.

Eye rolling _can_ be a tic. My son has never had seizures but had a lot of eye tics indeed. He even had eye tics where one eye went one way and the other eye went the other. Eye tics generally are a pretty common tic too from what I've seen in the TS community. My son's eye rolling and deviations lasted months but went away. His core eye tics still remain to this day although they're pretty mild now. Opthamologist said there was absolutely nothing wrong with his eyes, his eye muscles or anything else. He also wasn't having seizures. Eye tics, because they can be a sign of something else, are something that really needs the investigation that you're getting with the EEG although I don't know too much about that

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.

Rolling of eyes and those other things _can also_ be part of seizures. You're doing the right thing to sort it out. However, those eye rolling and other eye movements CAN also be tics.

Thanks Lara, I also just saw your post in the Epilepsy forum :)


Also, I have one more TS question.... what do people with TS do in their sleep? 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 back to 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! I don't know that he does that all the time. I'll have to watch him more sometime in his bed.

hi Dawn

my son doesnt tic at all when he is asleep, although he can sometimes have a sudden burst of them just before falling asleep

I just posted this on the E forum as well re the videos you took (god job on those as they will be very beneficial to the doc )

Thanks Chemar :)

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.

Some people tic in their sleep mildly and some people don't at all. There was another post about that here somewhere. If I find it I'll post the link. There are other movements people can do in their sleep, apart from just moving around I mean, but in a 4 year old I don't know whether that would be so common.

The period of time prior to falling asleep can be a time when tics are increased. You sound a lot like I did when my son was little. I used to watch him sleep too because I was scared. We had been told he could have some shocking things and I was frightened out of my mind. I used to sit in a chair beside his bed at night some nights. By the time my daughter started having her tics it wasn't a very big deal in comparison because at least I knew what was happening.

The hardest part, and what you're going through now until you get the test results, is just not knowing. Your appointment is tomorrow I think. Hopefully that will give you some answers and rule out any epilepsy concerns. If it doesn't, then at least you know what you're treating and that can begin immediately. I'm with Chemar... you need a professional diagnosis. The neuro. you're seeing sounds as if she's doing all the right things.

Thanks for the info, Lara.

The EEG is actually Wed. I'm glad it is so soon. When I was at the neurologist's office, I asked how long it usually takes to get in for an EEG (done at a different location, the children's hospital) and the receptionist said it probably wouldn't be until late August to September! :yikes: The neuologist was surprised and asked "WOW is it really taking that long!?" She said they are really busy and there is only one dr doing them right now. So I don't know whether I just got a REALLY lucky break and there happened to be a cancellation right before I called, or if the dr called and said we can't wait til September. Hmmmmm. I'll never know though.

Anyway, I called the 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!

G'day ives,
Just wondering how everything is going there. Hoping for an update when you get time.
I'm a day ahead of most of you (I'm in Australia) and I'm not sure if your appointment was last Wednesday now or next Wednesday.
Look forward to hearing from you.

Hi Lara :)

It was yesterday, but I haven't heard anything about it yet. I have to wait for the dr to read the test and let me know. Hopefully it will be soon. But I don't know if she is going to call me to tell me, or if she is going to type out a report to mail to me. Hopefully she'll call so it will be faster.