hello,

My 4 yr old grandson has been seeing a psychologist and psychiatrist for a little while now to try work out what is wrong with him.
I won't go into all the details but they were thinking along the lines of ADHD and/or ODD but last week he developed a tic and now they've thrown Tourettes into the list of possibilities as well.

They can't test him properly though or give us a diagnosis until he's 6 for some reason.

The psychiatrist has put him on pericyazine to help with the tic (he clears his throat all the time, especially when he's around other people ). We can ignore it but he started school this year and he came home upset yesterday as some of the other children were calling him amongst other things a "retard", a word I really, really dislike.

I'm just after any links, contacts or the like you can give me so I can pass the information on to my daughter as this is all new and confusing to us all.

Thanks

angie

Hi Angie and welcome

I am sure Lara will check in later.

In the meantime, do ask us any specific questions you may have and we will all try to answer. We are a mixture of parents who have children with TS as well as some adults who also post here and who have TS themselves

The medication you mention is not one I am familiar with and hopefully it doesnt have the kinds of side effects that many of the prescription meds for TS can bring to some people.

It is sad when other kids are insensitive....honestly, we found that being proactive and telling teachers and classmates was the best apporach...as you do not yet have a definitive diagnosis, perhaps the best approach is just that it is like an allergy and that he cant help the movements or sounds and that the docs are running tests for most effective way to treat.
We found that once classmates understood, they were in general far more accepting.

Your doc is right to wait on diagnosing as there is no finite test for TS and it is rather by observation and notation of duration and frequency of tics etc

IMO, The most comprehensive website on TS and its associated disorders is the TS-Plus site at www.tourettesyndrome.net

At Latitudes/ACN we focus on the more natural ways to treat TS etc www.latitudes.org

I have also recently bumped up a thread I have here on what was helpful for my son and here is the link to that too
http://neurotalk.psychcentral.com/showthread.php?t=1145

We are here for you and your family angie....do let your grandson's parents know that they too can join here to receive support and much info sharing

all the best
Cheri

G'day angie! Wonderful to see you again. I think you southerners got our scorching Summer weather this year. Heck, it's been too comfortable here this year in the sunshine state, it's too weird.

Bear with me, I slept in for the first time in years and might tend to ramble lol

First thing that I think of when reading your post mentioning symptoms like attention difficulties, oppositional behaviour, and tics is whether your grandson has had an evaluation for the autism spectrum. The reason I ask that is because our experience with doctors here was that they didn't really have much of an idea about autism spectrum and all they wanted to do was to treat the actual physical symptoms like the tics.

They basically couldn't see the tree for the forest and it took us until my son was almost 14 years of age to finally get the correct diagnosis of Asperger's Syndrome. It wasn't that he didn't have TS or attentional problems or anything else, it's just that some of the behaviours were directly related to his autism qualities and could have been helped in other ways if we'd known when he was little. Meanwhile he'd needed help in school and had not been afforded that because back then, the only diagnosis that would have allowed him that here was the Austism Spectrum Diagnosis.

I personally don't believe in what they call ODD. I see it as a symptom of something else and an unnecessary type of lable. But that's just my own personal opinion. I reckon if there's oppositional behaviour going on to the degree that a doctor wants to call it ODD... a disorder, then try to find a pattern or triggers to the type of behaviour. Is there any type of apparent communication problem, for example.

Does the child have any sensory issues that affect daily life... like at the dinner table, or the bathroom or anything else. If the child is refusing to eat certain foods or to have a bath or flush the toilet etc., do bear in mind that these things can be part of problems with taste, touch, smell etc... the senses can become overloaded. Plus, with overload or too much sensory stimulation, the child can start to feel out of control and that's often when things like anger or oppositional behaviour will surface...

Anyway, that's all beside the point I suppose, 'cause we don't know too much about what's happening for your grandson. I just wanted to throw a few of those ideas out there to you so that at least you can all think about them or see if they fit.

A diagnosis of Tourette Syndrome wouldn't normally be made until about 12 months after the initial onset of tics. However, in recent times as more doctors have become educated and more knowledgeable about tic disorders, they don't always need to wait 12 months if they're sure it's TS. TS is not just one tic though. Down below I'll post the actual diagnostic criteria and that will explain a little more. Bear in mind though, that a quite high percentage of young children (especially boys) will have a transient tic that will go away all on its own. As far as other testing is concerned, I don't really understand why they want to wait until your grandson is 6 ???

What sort of tests has he had so far? Any medical procedures like EEG or MRI or any type of behavioural screening tests at all?

Anyway, this pericyazine is a really heavy duty medication. Angie, this really worries me! I would be concerned about using it at his age to treat one tic or anything else, until I had figured out exactly what was going on. Here's some info. about it from an Australian gov. site. I don't understand in a million years why a doctor would use one of the phenothiazines as a first line medication. If there is a real need for medications there are other medications that have much safer side effect profiles and can help with tics and other things all with much less risk. This has been going on in Australia for so long now and it scares me that we've still not moved forward enough in the knowledge department.

NEULACTIL - Pericyazine
http://www.betterhealth.vic.gov.au/bhcv2/bhcmed.nsf/pages/swcneula/$File/swcneula.pdf

School! OK, well this is what I think about what's going on at school. I think that needing to medicate a child for having one tic in class because these other brats are calling him bad things, is totally out of balance. The school needs to do several things. The school needs to be educated about what tics are. The school needs to implement a no-bullying policy. If necessary, the teachers need to do some type of education with the children about tolerance and differences. How some people wear glasses and some people have diabetes and some children need to wear hearing devices and some children have a tic or tics. No child should need to feel as if they is something *wrong* with them just because they have a tic.

I'll come back in a second and post some links in a new post.

http://www.behavenet.com/capsules/di...touretteTR.htm

Diagnostic criteria for 307.23 Tourette's Disorder
(cautionary statement)

A. Both multiple motor and one or more vocal tics have been present at some time during the illness, although not necessarily concurrently. (A tic is a sudden, rapid, recurrent, nonrhythmic, stereotyped motor movement or vocalization.)

B. The tics occur many times a day (usually in bouts) nearly every day or intermittently throughout a period of more than 1 year, and during this period there was never a tic-free period of more than 3 consecutive months.

C. The onset is before age 18 years.

D. The disturbance is not due to the direct physiological effects of a substance (e.g., stimulants) or a general medical condition (e.g., Huntington's disease or postviral encephalitis).
__________________

Angie, I've always dealt directly with the TSA-USA to obtain information packets, but I know there is a TS Association in Victoria. It might be helpful to get some info. from them for school to help with this bullying business...

http://www.tsavic.org.au/

Added: I think that they would have some type of list of medical professionals including neurologists, psychologists and psychiatrists who are familiar with TS and Tic disorders. Frankly the person I would be seeing first is the NEUROLOGIST. I know for sure that there is a doctor at Monash Medical Centre who treats patients with tic disorders. I'm trying to think of his last name but I can't. He's a Professor. If I think of it, I'll come back and post.

___________________

Now this one is the OASIS site. This may not be relevant at all, but it's worth a look to see if anything actually fits.

Online Asperger Syndrome
Information & Support
http://www.udel.edu/bkirby/asperger/

What Is Asperger Syndrome? [also shows diagnostic criteria]
By Barbara L. Kirby
http://www.udel.edu/bkirby/asperger/aswhatisit.html

NOTE: that criteria in the middle of the page on that site might be really worthwhile reading for you daughter, angie.
____________________

A note about transient tics of childhood

I've seen it shown that from 5% to a high of 25% (5-25%) of children can have transient tics that go away within a year.

from Yale...
http://ymghealthinfo.org/content.asp?pageid=P02586

____________________

School Bullying
http://www.bullyingnoway.com.au/

____________________

[Angie, I vaguely remember that you might have had someone else in your extended family who had tics a long time ago... maybe 8 or 10 years ago??? Maybe I'm thinking of someone else.]

take care there, ask more questions. Tell us more info. Whatever you feel comfortable with...

angie, how are things going?

AMERICAN ACADEMY OF PEDIATRICS

Committee on Quality Improvement, Subcommittee on Attention-Deficit/ Hyperactivity Disorder

Clinical Practice Guideline: Diagnosis and Evaluation of the Child With
Attention-Deficit/Hyperactivity Disorder

http://aappolicy.aappublications.org...105/5/1158.pdf

Hi Lara
Im Kylie. My mum Angie started this thread. Sorry it has taken so long to reply. My partner thinks he is PCgenius and was mucking round with the computer and some how managed to completly stuff it. 4 days, a trip to the computer shop and $75 later we are back in business. Men lol
Anyway, thanks for all the info. Im still trying to get my head around everything at the moment and its been a tough few weeks. Some days I think my son is perfectly normal then other days I just know there is something wrong with him.

Um... where to start... ok, firstly on the Autism thing. A few months ago his kinder teacher and I had to complete a questionaire which was a pre-screening test for the Autism spectrum disorder. He didnt get enough 'points' to need any further testing at the time but since his symptoms are changing quite often we may need to do the test again.

Im happy with the ADHD diagnoses. He has all the signs of ADHD. We had already decided to do everything in our power to avoid medication and things were going pretty good. Then his tics got worse. He was clearing his throat literally every second word. We partner counted him one day and he cleared his throat 56 times in 5mins. So off we went back to the pysch who prescribed Neulactil. This little orange tablet has changed our life. He hardly tics at all and he now sleeps thru the night, something that at nearly 5 years old he has never done.

I was a bit surprised at the tourettes diagnoses at first, but the more research I do on it, the more I am starting to see that he has done quite a few of the different tics for sometime now. I didnt really know much about tourettes before all this, only what I had seen in movies. They all had the very loud vocal tics with swearing. He never did this. It wasnt until I saw the long list of other tics that I counted atleast 15-20 that he does do.

As for the further testing - We were told when we saw the Academic child psychiatry unit at RCH that testing cant be done until children are atleast 6 because of the type of tests that need to be done. Aparently a child under 6 wouldnt be able to do the memory, IQ & a few other tests that they do so it wouldnt be worth it

School - His teacher is being great about it. She pulled the 2 children aside that were doing the main bully and spoke to them letting them know that it wasnt on. She also spoke to the whole class about bullying in general. They school already has a no-bullying policy and Im pretty happy that the school are going everything they can to help my son.


I have to get going to give the boys breakfast and send them off to school. If I think of anything else I'll come back later and re-post.
Thanks again for all the links and info.

- Kylie

G'day Kylie,
Great to meet you! I'm sorry to hear about your computer woes, but glad it's all up and running now. Take care there, and if you have any other questions or if you just want to talk it all out, please do so. We're here. There are lots of great people who post here and I always found that it helps to get various perspectives from different experiences.

Just give a shout out and someone will be sure to help.
take care,
Lara