NEW AND TRYING TO UNDERSTAND THE TICS

[Pilbara]

Hello everyone,

 

I'm new to the forum, but I have checking in here many times during the last weeks as I research to death my sons TICs.

 

Best to probably just start with my son's tics, hes 7 and turning 8 this year. For the last 4 weeks he has been making vocal noises.

 

• Hard eye blinking
• The high pitch squeek, which is not very often.
• Getting stuck in a sentence, almost like a stutter. We get III, AAA, and during the last week repetitive words. The repeating of words is getting harder and the word an be repeated up to 6-7 times.
• When only when he says the III does he twitch his head to the right (like chin to shoulder) movement, and now lifts his shoulder.

 

It was only when he started twitching his head did we really get that something was wrong. Prior to than unfortunately we just kept yelling at him to stop the noises.

 

On reflection he had tics earlier in the year, the hard eye blinking, which I just took him to the optometrist for a eye check and he would finish a lot of sentences with a sort of grunt, sounds a bit like you would do when trying to talk after exercising. But I now think it was a tic as well.

 

Then we have 2 months between these two episodes. Right now I think it is possibly to early for a TS diagnosis because we are at the most probably around the 7 month mark. I don't know if it will be transient because he has both vocal and motor tics and the vocal tics are complex. Really difficult to find anyone who has been through transient tics because they are not in the forums anymore. So I just don't know what to do, what to think, I'm an emotional mess and worried sick. I could do with some encouragement as I find there is definitely a lack of support in Australia. Even the TS Association website has not been useful. Is there a chance it could be transient tics still or are we looking at TS.

[Chemar]

Hi

it really is impossible to say for sure, but remember there are more potentially more causes for tics that just TS or transient tic disorders.

 

If you read the helpful threads pinned to the top of our TS/tics board, you will find a lot of info http://www.latitudes.org/forums/index.php?showtopic=2459

 

It is also always a wise move to make sure that the tics are not the result of strep or some other infection, as many times this can be the case, and a lot of physicians are still ignorant about this connection. We have a PANS/PANDAS forum here as well that has info about that

 

We do have other members here from Australia so hopefully they will be able to give you input as well.

[Missmom]

My son started with just tics like that as well that would completely subside after a few weeks. Then I noticed it coincided with illness or allergy type symptoms. I also did research and noticed that he has OCD, it was manageable and not really affecting his life, but still there. OCD can take on many forms and is sometimes difficult to notice in children. We treat with antibiotics and most of his tics subside and his OCD is very manageable. By the time my son had his third major episode I had researched and done my homework. I knew which labs to request and was ready to battle with doctors. My sons third episode was the worst, started overnight about a week after an illness. He woke up one morning and could not stop nodding his head constantly. I immediately took him in and after labs it was determined he had pandas. Yes the pediatrician told me it was most likely transient tics, but that did not sit well and I knew there was more to it. I begged and pleaded for him to run the strep labs (bloodwork). The rapids came back negative. Four days later he called me back and confirmed pandas.

 

I am not saying this applies to your son at all but if you notice the wax and wane type of symptoms you should just take note to see if it coincides with any sort of illness.

[logismum]

Just popping in to say Hi

 

I'm also from Australia and have found these forums so amazingly helpful in investigating my sons health. Feel free to PM me if you want.

[Dedee]

Your post says it's best to just start with your son's tics. Is there anything else going on? This is important. Are there other symptoms? Anxiety, Frequent urination, Seperation anxiety, unusually clingy, very irritable, moody, explosive, signs of OCD, any other behavior changes? If there is something else associated with the tics you can most likely rule out TS. That leads more in the direction of an infectious trigger. You would want to look into finding a doctor who has experience treating PANS. You may find that things would clear pretty rapidly with antibiotics. Many PANS kids will only experience tics and the behavior changes come later. It is absolutely worth looking into. JMHO.

 

Dedee

[Chemar]

If there is something else associated with the tics you can most likely rule out TS.

 

Dedee

Hi Dedee

I just want to mention that many people with TS do in fact have co-morbid conditions like OCD, generalized anxiety, ADD, ADHD etc etc so just because there are other conditions associated with the tics most certainly does not "likely rule out TS".

 

I agree, as I posted above, that investigating possible PANS is always a wise move, but we do need to be careful not to confuse people who may well be dealing with TS.

[Pilbara]

At the beginning of this year (which when I think about it was when the tics started) he use to run out of class every morning, had really bad anxiety, kept calling himself stupid. It brought me to tear he was so distressed. We investigation and he was diagnosed with Irlen Syndrome, which is a visual perception problem. Simply the white of paper dominates so the words move on the page. It's a correctable problem with the use of tinted glasses. He is now building confidence, is enjoying school, is catching up with his peers. Most importantly the anxiety

is gone. Also most likely as he develops he won't need the tinted glasses anymore because we identified the problem so early.

 

I'm a Social Worker by profession so really aware of behavioural changes. I've been looking for comorbid conditions but can't really say there is anything outside normal development for his age. Definitely can rule out ADD/ADHA. No other signs of OCD other than repeat of words and sounds. But even though repeated, there is no pattern to the number of times its repeated so I'm not seeing the consistency I would expect that comes with OCD. Definitely no other OCD behaviour or thoughts behind an action that I have witnessed.

 

I would describe him as a child that is nervous, but I don't think he meets the criteria for an anxiety disorder. He just holds back, thinks about things, but quite often will have a go after watching someone else. I'm also finding that he is growing out of this nervousness. At 7 years he is involved in more high risk sports like BMX racing and Go-Kart racing. He has a buggy that he drives flat chat around the block. This is more than a lot of 7 year olds will partake in. Confidence is really starting to build. He is a very happy and active sports mad kid, good hand eye co-ordination as well.

 

Occasional bedwetting, but again also within the realms of normal as bedwetting can occur up until 9 years of age. But very infrequent these days.

 

NOW FOR THE BIG THING THAT I JUST CLICKED ONTO YESTERDAY. We live on a rural block, he is always outside in the dirt playing with his construction toys. This property has a history of being used for various industrial uses, ie. a pig farm, industrial spray painting, truck yard, etc. There may be contamination in the soil, but most importantly he may be subjected to toxicity from the Industrial spray painting. Although paints don't contain led now, there is a high chance that when they blast the old paint off the equipment, depending on its age it could contain rust and lead if over 40 years old. Once it becomes airborne the wind could carry it towards us.

 

Thanks to the amazing women on this site and the incredible knowledge you have, I've located an Integrated Doctor (albeit a 2 hour flight away), that will see him in a couple of weeks time, but before then, he is posting the test through to get a hair sample so we can test for heavy metal poisoning immediately.

 

I am so thankful that I have found this site. To find people that are actively trying to make life better for their children has been so helpful. I really appreciate it.

[Ozimum]

Hi Pilbara,

Welcome! I'm also in Australia. Hopefully your appointment with the integrated doctor is helpful, but just in case... I just wanted to suggest you check out the websites for the following Aussie Biomed organisations: MINDD Foundation and Biobalance. Both have practitioner lists. These Biomed drs and allied practitioners work with a range of conditions, not only Autism. I'm told that there is a good Biomed dr in Perth - Dr C. (Given your name I am assuming you are in WA!) We see a Biomed dr in Vic who has been wonderful - my DS is happy and functional now after his run in with PANDAS. Feel free to PM me (see the top right hand corner of this page.) Good luck!

[Pilbara]

Ozimum, do you have any more contact details for Dr C in Perth, Anything that would help me search him out would be great.

[Ozimum]

Yes...Dr C is on both the website practitioner lists - search for WA practitioners and you'll find her. Try biobalance.org.au