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Old 01-06-2012, 08:24 AM #11
Lara Lara is offline
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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...
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Old 01-09-2012, 02:44 PM #12
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Originally Posted by Lara View Post
Maybe get a 2nd opinion if that is possible. I did. I got about 4 actually. It helped.
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.
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Old 01-09-2012, 03:33 PM #13
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Lightbulb

I know it can be a battle these days. I was just on the phone with a friend and she was very ill with a bladder infection, had a drug reaction, tests, and couldn't get the results, and ended up in an ER of sorts. What a mess. No communication at all!

I think if you get that written report (not just the photos) it will explain alot. Many of us can understand most MRI reports.
I'd do that before getting a new doctor. You might not need one if you have the report. A report showing NOTHING, compared to what the doctor said, would illustrate it was all his opinion in spite of the report. Sometimes doctors do that, and it can make for much confusion!
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Old 01-09-2012, 03:34 PM #14
Lara Lara is offline
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I just saw your post in the other thread showing your area. I'm in Australia so not familiar with your area but perhaps someone else will read the posts and know of someone.

Even though your child doesn't have an actual TS diagnosis, he is being treated for tics and so I'll post a couple of links. Perhaps you can email the association with your son's history and see if they're able to help you find someone for another opinion or even help you with some more information locally. I'm surprised your son has been prescribed Neuronitin for his tics.


http://tsa-usa.org/aabout_tsa/ausachapters.html

Alabama
  • Auburn
  • Birmingham


http://tsa-usa.org/aPeople/Parents/parents.html
Quote:
CONTACT TSA'S INFORMATION AND REFERRAL SPECIALISTS - or email - These TSA staff members will help you find a Medical or Allied Professional (Counselor, Psychologist, Social Worker) who specializes in Tourette Syndrome - to confirm the diagnosis and to advise you of available treatment options. We'll send you a list of practitioners in your area. We'll also send you a free packet which gives basic information about Tourette Syndrome.
note: I've removed phone numbers and email addresses. Need to go to links to see them.

Plus:

Ataxia foundation have a list on their website with includes child neurologists.
http://www.ataxia.org/pdf/Neurologis...ted_States.pdf
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Old 01-09-2012, 04:08 PM #15
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I agree with mrsD that you should try to get a hold of that MRI report. There are a lot of different reasons that children get a tic or tics.

My concern is that you've been left with such little information and I personally wouldn't be happy having my child in the care of someone who said "that the 'pull' of the right brain against the left was manifesting itself in the form of these 'tics'". Also, most tics do not need to be treated with medications. Some tics can be self-injurious and problematic of course, but simple motor tics tend to wax and wane and change and sometimes it's better to wait and see how things go. Just my opinion of course.

My concern is that you've not really been told why your son has been experiencing some difficulties.

How old is your son?

A transient tic or transient tics are actually quite common in young developing children between the ages of 3 and 6 I think it is... will check that. Most will go away on their own.

EDITED to add:

This is an old paper but it's regarding Secondary causes of Tics. i.e. tics can caused or associated with other conditions. That's why it's really important you get a hold of that MRI report or even go back and take a list of questions with you and have a really good talk with your son's present doctor.

MEJIA, Nicte I; JANKOVIC, Joseph.
Secondary tics and tourettism
Rev. Bras. Psiquiatr.,
São Paulo, v. 27, n. 1, 2005.
http://www.scielo.br/pdf/rbp/v27n1/23707.pdf

Last edited by Lara; 01-09-2012 at 04:29 PM.
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Old 01-09-2012, 04:52 PM #16
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How old is your son?
He is ten. He had to have the tic for at least a year before they would send him to the neurologist, so it's been awhile. I have an appointment next week to go back to the general doctor to get a referral to a pediatric neurologist. (The one he was going to will see all ages, but I've never seen any other children there.) From there, it is my understanding that when we go to a new one, we will take all of our old information so I need to get a hold of that.

In regards to getting copies of the report before trying to go to a new neuro- I think I'm just going to do both! His medication isn't seeming to help much anymore and if I have to take him back to one, I'd rather try and find one that I feel will work with us and not just want to give him some medication to stop the 'tics', which, as mentioned earlier on the page, weren't harmful to him. It made him look strange, but he wasn't even aware that he was doing it... I wouldn't want him to take the strong medication strictly for appearance reasons, but the neuro made it sound like there were other issues going on 'inside' that the medication would also help?

In any event- I am so thankful that everyone here has been helpful. We are new to this situation and I wasn't sure if my expectations were set too high or if we were getting the normal treatment.
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Old 01-09-2012, 05:16 PM #17
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Your expections are not too high.

Quote:
I'd rather try and find one that I feel will work with us and not just want to give him some medication to stop the 'tics', which, as mentioned earlier on the page, weren't harmful to him. It made him look strange, but he wasn't even aware that he was doing it... I wouldn't want him to take the strong medication strictly for appearance reasons, but the neuro made it sound like there were other issues going on 'inside' that the medication would also help?
Please let us know how you get on. You're doing the right thing.

Something I found helpful was having all copies of any tests sent back to the one person. In my case it was a Paediatrician. Anyway, that was helpful because in our case there were many different types of specialists and many different types of tests involved at one point. Maybe talk to your general doctor about doing that when you go next week.

all the best
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Old 01-17-2012, 09:20 PM #18
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Please let us know how you get on. You're doing the right thing.
His doctor put in a referral to a pediatric neurologist at a children's hospital. I'll come back and let everyone know what they decide when we go, because you guys have provided an 'outlet' of sorts, and even that makes me feel a little better.
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Old 01-20-2012, 12:10 PM #19
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@ Roxieblue:

Have you been watching CNN lately--- about the 12 girls in one school who have had attacks of stuttering and tic like twitching of the neck and head and arms?

It sounds a bit like what you described here!

http://www.cnn.com/2012/01/19/health...iref=allsearch
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Old 01-20-2012, 05:13 PM #20
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@ Roxieblue:

Have you been watching CNN lately--- about the 12 girls in one school who have had attacks of stuttering and tic like twitching of the neck and head and arms?

It sounds a bit like what you described here!
Scary stuff there. I don't think it applies to him, because he's stuttered since he learned to talk and the tics just appeared last year. Don't know of anyone else that has the issue.
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