Chronic Motor Tic Disorder

Danjocass

Mousketeer
Joined
Mar 4, 2011
Messages
329
Hello all. My DH and I just found out that my DD (6 years old) has Chronic Motor Tic Disorder. What started as a tic every once in a while has turned into a tic just about every 5 seconds of every day. We were just there in November and she did not have this. She is a little concerned about meeting the characters and pricessess ( she feels embarressed) I have explained to her that she is still the same smart, funny, wonderful girl before the tics and she has nothing to worry about. Anyone out there have any experience with this? Any advice while in the parks? I just want her to have a magical vacation and see that there is nothing to worry about. Thanks in adavnce
 
There are a few of us on here with kids who have Tourette Syndrome (and my daughter was first diagnosed with Chronic Motor Tic syndrome and later changed to TS when she developed a couple of vocal tics - though not what one would think of as "vocal").
I have two kids with TS and have been once since the first one was diagnosed. CM's were GREAT there! We had a few people that were in line that didn't get it, but they seemed like they would have been rude if they were next to kids that were just awake!
When DS was first diagnosed, his tics were CONSTANT. They'd been going on for over a year, but we didn't know what it was. When it got to the point of over 60 coughs a minute and constant hand/head tics, that's when we got a diagnosis.
His tics have calmed some, but they tend to wax and wane. I will say, allergy season is the hardest. I've been told by some that any "immune reaction" in his body will cause tics to worsen. I know that after DD received 3 immunizations the other week, her tics spiked for about 24 hours.
It'll be fine. Try to use FP's to limit waits, but it will be fine.
 
My brother has had Tourette's since I can remember. As a family, we had gone on several Disney trips when he was young. He had/has vocal and motor tics. We met characters, did everything 'disney'. And had a great time doing it. IF anything, his tics seemed to get better because he was in a place where no one knew him, and he didn't have to worry about people that he knew, friends or family, seeing him or hearing him, and what they thought. He got to be 'him'. He enjoyed himself thoroughly. As my brother grew up, the less stress he had, the better the tics got. The more stress he was under, the worse they would get.

Disney, amongst other places, was a great place for him! Have a fantastic trip with your daughter:)
 

Hey, are you flying to Orlando? If so, will you let me know how it goes?
I haven't taken any of the kids on a plane yet, and now I'm nervous as to how they would handle it - though I know I can give them something to sleep if needed.
Just something we haven't attempted yet and I want to try.
 
Hey, are you flying to Orlando? If so, will you let me know how it goes?
I haven't taken any of the kids on a plane yet, and now I'm nervous as to how they would handle it - though I know I can give them something to sleep if needed.
Just something we haven't attempted yet and I want to try.

Last year was the first flight for my DD. She did great! She had some minor issues with her ears on the way home that made her cry a little but nothing horrible. I thought about getting her to sleep alsp, but quite frankly I had never done that before so i figured why start now? She is excited about going on a plane again in January.
 
Our DD6 has TS and has been to the parks and Disney Cruises (and stayed in DCL child care without issue the CMs seemed well informed). Everyone has been great each time and her tics are quit severe much of the time. Good. Luck.
 
though I know I can give them something to sleep if needed.

Please don't! Most of the times it is not needed thankfully, but if you do "win that jackpot" and have to do an evacuation, having an altered state of mind is adding to the problem. At such moments one doesn't want an adult on board with an altered state of mind, let alone a child who is already more dependant on others in evacuations etc. Again; odds are highly in favor of never running into an evac (let alone it being one that truely comes down to acute emergencies) but IMHO not a combination you want to have on your hands in the odd ball chance it were to happen.


If that is not enough; PLEASE do the kids the huge favor of NOT having them try something new while in flight. One never knows upfront how an individual will react to any and all medications. Can be as desired but can also be very much undesired. Anything from becoming hyper, having a sensitivity feeling (very highly) uncormfortable which can be both a side effect and caused because of how the drugs work on the body (feeling of loosing control can be very scary for some). Even when trying beforehand and having the desired results there is no guarantee for what it will be in flight. Up there our physiology changes a bit and can cause different results than on the ground. Same reason folks can get drunk a lot quicker while in flight, you need to drink more liquids in flight than on the ground etc.


Easy to say don't, but what then right? I'ld focus on giving the kids an idea what to expect. You having more then enough options to keep them busy for a lot more hours than the flight is scheduled to be (so in case of delays you don't find yourself running out of options half way through). It can be as simple as playing bingo, with the "numbers" or objects (depending on age) the kids have to "score" can be found in the flight while seated. For instance; how many seats in a row, can you see a lady in a red shirt etc. etc. Have pics and/or videos of disney and get into planning mode with them. What do they want to do and why? Who is their favorite caracter and why? Drawing, watching a favorite shows on their own dvd (with headset so not to bother others) etc. etc.

As far as tics; you know what can be of help and what not. For some a new computergame can help reduce. If so; go out hunting for a second hand game that is new for them. Not the best bit of parenting for daily life but these once-every-so-many-months/years things are quite something else then allowing it in daily life. For a girl in my hometown, she can reduce some of her tics if giving into one of her other tics; singing. She has been able to do that singing in a whispering voice, so it would not be audible unless you are literally next to her and listening for it. Perfect way for her to let go if need be without being very much in the picture. Those you and/or him can not reduce or steer; so be it. Inform the FA that works your area of the plane about it beforehand if it is likely he will have tics that others might otherwise complain about (for instance verbal ones that are audible) and if need be; those seating around you. Be nice and understandble for possible "bother" to them but not unsure or as if it is a bad thing. It isn't period.

If you fear a tic of wanting to kick the seatback in front of him; talk beforehand to the agent at check in and at the gate. If the flight is not full, see if they can arrange an empty seat in front of him or a bulkhead seat. This would not solve the soundproblem (would be another thing to work on) but would take away possible ouch to other guests. Full flight? After take off, move him about 90 degrees in the seat with legs your way. Not the most comfy for you but not having the seatback right there in front of his feet and ohhhhhhhhhhh so close for kicking might help things.
 


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