Need help developing a plan

[ilovedogs]

OK: so we've been at this for almost 3 years and still I feel like I know absolutely nothing, LOL!

 

Anyway, ds is increasing in tics again but they are more complex tics like pulling his shirt and a vocal where he clears his throat. His eye blinking is almost non-existent, too, but he also smells his fingers if he eats anything with his hands like pizza, sandwiches, etc. He has so many weird habits/movements/tics(whatever you want to call them) but they aren't very noticeable to most people unless you stare at him. The most noticeable is his finger sniffing. I have been very lax in giving the supplements but I'd like to start again and see how it goes. What I wonder most about is how many of tics seem more like habits. Like things he does only in certain situations. He clears his throat more after having eaten a meal and then I don't hear it as much. He only sniffs his fingers while eating. He only pulls his shirt when he's in movement like playing tennis or walking through a store.

 

So, I guess what I'm wondering is: would magnesium and B vitamins help with something that seems more like a habit or a tic that occurs situationally? I'm so used to the eye blinking, hair tossing, jaw stretching, etc that I truly see he does/did ALL the time, that I'm having a hard time figuring out where to start with these situational movements. Any suggestions? Our doc has not been very helpful and I'm thinking of finding a new DAN, but the tics really aren't interfering in his life so I don't want to go overboard and get him all worked up over nothing. I feel like for 2.5 years I kept messing with him, trying new supplements, changing his diet, etc that he's just burned out if all. I'm sure if it was hindering his life or his performance in tennis, he might be more willing to work with me but he's almost 12 now and he resists changes and supplements even more since he doesn't see a problem with his 'issues'. Sigh, this is one long road!

 

Bonnie

[Chemar]

Hi Bonnie

 

I really do feel that any plan is very individual specific.

 

as you know, I feel magnesium is a key supp and that keeping diet clean is essential. We may not always immediately see the "evidence" of artificial garbage triggering things but I feel it is a cumulative negative neurotoxin

 

all the rest is dependent on your child's specific needs

[Lynn777]

Bonnie,

 

I'm so new to this I probably won't be much help, but I understand exactly how you feel. My son started with eye blinking, grimacing and humming. They have since gone away and what we have now are the lower jaw stretch and the more complex (situation) tics. If he is bored or nervous he makes short swinging hand movements and when he plays sports he wipes his hair and scratches his cheek, legs, elbow. If you didn't know he has tics you would probably just think he has allergies and sweats a lot. What is strange to me is he is more aware of these tics then the simple ones, he seems to have more control over them and he too is not bothered by them, in fact he has gone so far to say he "likes" doing them. Frankly, I prefer them to the eye blinking and grimacing, which I find very hard to watch.

 

Anyway, I agree with Chemar and think the Magnesium, clean diet and probably a decent multi are important. I also think a supportive doctor is important, but I am beginning to realize that my obsessive compulsive need to eliminate all of these tics, dragging him from doctor to doctor, from blood test to urine test & chastising anyone that offers him a potato chip or sprays a room deodorizer with 500 yards of him is as much (if not more) about me then it is about him. He is happy, healthy, enjoying life, friends & school. He was initially anxious at the onset of his tics, but that has subsided and his therapist says she no longer sees any anxiety and the very mild rigidity (OCD) he has already responded to with an increase in flexibility.

 

So, maybe I'm the one that needs to relax, find the right doctor & maybe the right meds/sups. Because I'm the one that's not dealing with or accepting this mind boggling disorder.

 

I also agree every plan has to be individual. I think the most important thing you said is that "He doesn't see a problem with his issues". How great for him! I pray my son feels that way when he is 12.

 

Best wishes to you...

 

-Lynn

[ilovedogs]

Thanks guys. I'll start by adding back in the magnesium and then being a bit more diligent on the diet. I'd love to get some Omega's in him but he burps up even the flaxseed oil and cooked salmon. Actually, so do I so I'm wondering if we have an issue with those oils in general? Anyway, we're in this for the long haul and some days I just can't see the light at the end of the tunnel.

 

B

[CSP]

Hi Bonnie,

 

Well we are dealing with our own little wax here. I just spent 5 days watching my nieces and he has been off the charts while they have been here. He also got a call from a country club he applied for job, and boy now he is so nervous he is ticcing like crazy.

He will be taking behind the wheel soon so he is excited, he thinks he is getting a truck soon. We all went to the fair yesterday and he got that bad head jerk back while on the rides, I was so happy to have my little nieces so I could take them on the baby rides and I did not have to watch his head. I may have over reacted and wanted him to go home.

 

We are dealing with so many things this summer with him I feel like we took a huge back slide. So feeling a bit like you do.lol

 

I hope he calms down soon. Yours and mine.

 

CP

[ilovedogs]

CP, I'm sorry he's been waxing lately. Totally know how it feels, LOL! I asked ds if he could stop the throat clearing he was doing(which he only does while eating or drinking for the most part) and he said no and that it's really hard to stop and that he just has to do it. So, I'm assuming we're looking at true vocal tics with him right now. He also tics more when watching TV which he wasn't doing for a while. It seems his tics are situational: grabbing his shirt while walking, eyebrow raising for TV watching, and clearing the throat while eating. Yet, he's still not too bothered by them and neither is dh so we just plug along.

 

Like I said above: I really need to just add in the magnesium both in epsom salts baths and in the natural calm. Are you trying any supplements these days? Anything nutritional that you're doing or dietary wise?

 

 

Bonnie

[CSP]

Hi Bonnie,

 

We have not done anything, mostly because he is so busy with the fire house and now a job we were hoping he would just calm down as he gets comfortable.

 

We have asked him to take the epsom salts bath and that is a fight, (almost 17yo ya know) so we have not asked in the last week.

 

I was proud of him he told the country club he had TS so they know and now I won't worry too much about that.

 

I guess I feel like he just needs to handle this on his own and I need to back off on trying to keep him 12yo and taking charge of his body.

 

I'm also weepy because oldest dd is going away soon to college. (sniff, sniff) That has kept my mind busy too.

 

Hope we can get to together when you visit,

CP

[ilovedogs]

Awww, where is she going to school? I hope it's not too far away! We're coming at the end of September, as usual, so hopefully we can get together then! I'm looking forward to it. We've been dealing with some issues with my dh these days and I'm really looking forward to visiting my mom and getting a break from the stress here. Life is always good, though, despite our challenges and I just take things one day at a time!

 

B