Hi
mrsD let me know of your post.
My son is now in his 20s but has TS, genetic, and diagnosed when he was 10. Your doctor may be correct in ruling out TS as that usually does manifest with both verbal and motor tics.

I must say I have never heard of what your neurologist has described though? and really feel for a young child being on a strong drug like Neurontin??

Does your child have a history of strep infections or has he ever had a tick bite that you are aware of? Conditions triggered by those can manifest with tics.
I have more info if you require it.

Even things like allergies (food and environmental) can trigger tics, and I also know of some people who have developed tics due to misalignment of the TMJ jaw region, photosensitivity and a whole bunch of other factors

I've been thinking about this thread.

You know in the ADHD world and also the autism spectrum disorders, there are comments about brain dominance of right vs left.

This article goes into that:
http://www.leapingfromthebox.com/art...ngstyles2.html

From what I've gathered, over time myself, looking for things to help my son, back when he was young, what I learned was that in children there is a tendency for ADHD kids and some others, to show right brain dominance at younger ages. They may tend to take longer to develop the left hemisphere executive functions, and the age they do this varies from child to child.

I can remember my son one summer at age 12 being much easier to communicate with and interact with. I used to joke that he was finally becoming "human" and more adult. He'd respond to logic more effectively and was almost a different person! (he tended to be emotional and reactive prior to this maturation stage).

So this comment from the neuro about the underdeveloped brain, may reflect this developmental path. And not really an organic defect that would seem to be much more alarming IMO to a parent. Therefore, I think you really should get a copy of that MRI....which would show some organic defect. But if it is essentially normal...I'd question using drugs on him at this point, if he is psychologically at a cusp for a new developmental milestone.

Perhaps seeing a child centered psychologist may be helpful and perhaps even more helpful for you at this time?

Chemar - He hasn't had strep and no tick bites that we know of. Until this point we never had any reason to believe there was anything the matter with him. Now that we've realized something's not right, we can see a lot of signs that could have pointed... really immature developmental-wise, emotional problems, can't focus, etc.

When the tics started we monitored him to try and see if there were any triggers. Tried adding in and taking things away, watching for stressful times, and things like that- to no avail. The tics got to where they occurred every five minutes or so no matter the situation. Now that he's been on medication I only see them appear if he is really frustrated. The doctor seemed to think this was normal.


mrsD- 1.) Development seemed normal, although he had some trouble with speech (stuttering, distorted sounds) but this cleared up taking speech classes at school.

2.) He is not on ADHD medication, or anything besides neurontin

3.) No particular diet. He's never had much of an interest in eating, and doesn't snack much outside of meals. Has some sodas and such, but not everyday. (We tried cutting this out over the summer, didn't seem to make a difference).

4.) The 'tics' we were seeing were sudden darting of the eyes (he was unaware and can't tell when it happens) and an unusual twitch of his head to the side. Haven't seen the head twitch since starting medication, the eye one happens when he's really annoyed.

I wasn't given a copy of the EEG but I do have the images from the MRI... not that I can tell anything from them!

We had a visit with his regular doctor a few days ago, who just wanted to do things like check his height, weight, etc. I'm starting to feel like I couldn't find any information because it isn't out there.

Hi there.

Do yourself a favour before time flies by... organize copies of the report from the EEG and request a copy of the report to accompany the MRI.

I'm sorry if this is a little information overload, but you mentioned stuttering. You say that's cleared up now. My first thought reading your post that it may have been connected to his tics.

I posted a heap of info on the TS forum ages ago regarding Stuttering and Tics. I'll post that here now but I haven't had time tonight to check that all the links are still working. I'll have to do that in my tomorrow as it's late here in Australia now.

EDITED to ADD: I stayed up to check my links. They all work, but as I said, I'm sorry if it's information overload.

Stuttering (from my bookmarks)
http://neurotalk.psychcentral.com/post521996-60.html

My son (adult now) was originally diagnosed with Sydenham's Chorea, which is a movement disorder which sometimes follows Rheumatic Fever, which is caused by Streptococcus bacteria. Later that was replaced by diagnosis of Tourette's Syndrome and some other things including obsessive compulsive behaviours, attention difficulties. Later he was more correctly diagnosed with Asperger's Syndrome (Autism Spectrum) and a tic disorder/TS. The AS diagnosis became primary diagnosis.

He was never developmentally delayed as with regard to childhood milestones. In fact he was advanced developmentally according to the regular guidelines. Crawled 4 months. Walking running 12 months. eek

His first Brain MRI showed a bright spot and also enlarged Virchow-Robin spaces. He's actually adult now and one of the most intelligent people I've ever known. Different in some emotional ways tho

From your first post here
? Can you phone his Neurologist and ask what he meant? That's such unhelpful and unrealistic and downright scary language to give to a parent so concerned about their child and you've gone home not knowing what to think.

Keep posting. Please do call to arrange copies of those reports. You need to keep them yourself. Unfortunately, lots of times we find our selves as mothers having to search and search and take info. back to our children's doctors. I would be asking for an PDD - Autism Screen early just to rule that out.

Did the doctor say exactly what the Neurontin was supposed to help? I've personally not ever heard of using Neurontin to calm tics.

Hang on there. You're not alone!!!

I will read up on that. It didn't occur to me. The stuttering was a problem starting about 3-7 years of age. It was always only at the beginning at the sentence, until they started timed reading passages at school- he would get flustered and get stuck on the words because he knew it was important to hurry.

I was kind of lead to believe the only thing I could get were the MRI photos. This was supposedly the best neurologist in the area- he has been in practice for like 40 years and has great ratings. I feel that any of the times we visited his office, he was just in a hurry and glossed over anything I asked, or spoke to me as if I wouldn't be able to understand. We live in a rural area, and the one we were visiting is one of the few in the area that will see children. I am going to look into other places and see if maybe they'll see him anyway. It depends on whether the insurance will pay again if we can take him somewhere else right now. I'm not sure how that works or if they can use the same MRI pictures or what. Thank you all so much for taking the time to respond. I found a forum that I thought looked helpful because I've not found much information on my own research but I'm starting to believe I just haven't been given enough information... which leads me to wonder are they just not telling me or they don't really know?

There you are. I was just editing my post above.

Here in Australia we can get the full typed reports usually without asking. If in a hospital at the time sometimes they'll try to send you home with just the pics and without the reports but you can ask for them. You own them really. Not sure how it works in the USA.

Hate to say this, but I did it myself. Maybe get a 2nd opinion if that is possible. I did. I got about 4 actually. It helped.
Places like the TSA-USA can help you find knowledgeable practitioners in your area if you suspect a tic disorder for example...

Thanks. This is the conclusion I have come to, but unfortunately am having no luck. I have spent most of the day looking up other neurologists and calling around- some won't see patients younger than 16, some have a 5 month waiting list for new patients, some specialize and don't do general neurology... seems like it shouldn't be this hard to take a child to the doctor. I am down to looking into places that are hours away. I hate to drive all that way for someone that I'm not sure will be the right choice.