Guidance Needed for Likely TS

[Jason_DFW]

I am struggling to come to grips with the fact that I am suddenly having to wrap my hands around this issue, when it all seems so sudden.  We can use some guidance and next steps and how to help our son move forward.  

Our son has just turned 13 this month.  He's an active young man, who plays sports at a very high level.  About a year ago we started noticing a sort of shoulder shrug.  Not too frequent normally, but at times 1 or 2 over a 5 minute span.  About 4 months ago excessive blinking started, and it has since become progressively worse at a rapid pace.  I noticed last night that when his mouth is open he grimaces only slightly when blinking.  Just this evening, when in a non-public setting and playing video games the grimace is very pronounced at the blink.

My first call today was to our primary, asking for a reference for a neurologist and was quite surprised by his response, that we should instead take our son to the local children's urgent care immediately, as it could be an electrolyte imbalance or diabetes.  We opted to pass on that, right or wrong, and start calling Monday morning in search of a pediatric neurologist.

My wife's cousin has a son with TS, and after speaking with her all signs point to TS.

What to do from here?  I know that TS is usually not life threatening and can be somewhat controlled, but if diagnosed I understand we have a long road of education and therapy.  

How do we best help our son?

How do we help him to understand he might face petty ridicule and teasing, and how to cope with that and remain strong?

Any treatments that have worked well for your families and those to avoid?

Maybe this is all premature, but my heart is breaking for him.  Again, not for having to face a very manageable issue, but for my baby boy being thrown into an unfair situation that he must now learn to face in the midst of all of the normal hurdles of being a teen.

[AverysMama]

Hi there,

I don't have a lot of experience or advice to share, as we're new to this community, but just wanted to reach out because I know how hard it is to suddenly be handed a diagnosis that will change the rest of your and your child's life.

My 6 y/o daughter began with her tics when she was just 4 years old. I knew in my heart once they began that this was what it was, but I kept hoping it was just a transient situation. We kept track of the kinds of tics and frequency as well as the waxing and waning of the tics for over a year so that when we saw the doctor we had grounds for a referral to a neurologist. I also made sure I mentioned them and my concern to the doctor every time we saw them.

As far as I know, to be diagnosed you need a year of vocal and motor tics, or at least we did. Once we hit that year mark we had had relatively no tic-free time periods and our ped was happy to send us over to a neurologist. I hate when I hear that people have to fight for it. You know your child and your gut instinct is usually correct.

We took it pretty hard in the beginning. I would cry constantly watching my small child taken over by the tics. But I quickly learned that educating both yourself and your child about the disorder helps. And helping them to understand that it's not something they can control and not something they should be ashamed of is important.

I'm still terrified about what the future will hold for her, as I would say her motor tics are fairly severe at this point and have come to this point from being fairly mild just a year ago. But she doesn't seem to be bothered by them right now, it's really just myself and my husband who are bothered by them. As long as she's okay, I should be okay too. 

I can't imagine what it must be like having them suddenly appear in a teenager. I'd definitely push to have him evaluated and try to get some answers as soon as possible. 

Good luck to you!