Daughter's Tics on Vacation

[azhorsegal]

Since my 7 year old daughter's tics started back in April they increased as the summer went on, almost every muscle group and one going just about every second. Looking back they actually started with eye rolling a few years ago, but didn't recognize it until now. I have been trying different diets and this last one, the Feingold diet, taking out all artificial coloring and flavoring, and certain perservatives, and corn syrup, her tics have pretty much gone away. It's still to early though to know if it's the diet or the tics are just on vacation, but I am happy to see my daugther get a few weeks rest from them. I have slid a bit on the diet allowing some things to come in, just to see if it triggers any tics, so far nothing has happened. My heart wants to leap for joy and say "they are gone" but I know that will more than likely NOT be the case. That's probably the most frustrating thing for me as a mom, WHEN are they coming back? Again not "if" but when. My daugther has not been diagnosed with "TS" but instead a "Childhood Motor Tic Disorder", but in reality I don't see much difference, except she has not had it for a full year yet. (She does have verbal tics at times, but those are pretty mild at this point).

 

She starts school on Wednesday, and I'm a little nervous about what might happen, but her teacher is aware of her condition, and is actually a teacher I specifically asked for. She used to be my daughter's kindergarten teacher that is now teaching 2nd grade. I figured if she had a teacher she knew, and liked, then it would be less stressful on her. We also found out on Saturday, during the school's open house, that two of her best friends are in her class, so that should help. She is also moving to a new swim team starting this week and if all works out will probably be with this swim team for a long time. When she's walking around the pool you can tell she has tics (except these past two weeks), but when she starts to swim, you never see them, she's one of the best swimmers there and her coaches are always saying she's very pretty to watch because she really knows how to reach out and stretch. Even though the tics will more than likely be back, her swimming is a time she can get away from them. We are changing swim clubs because she's basically out grown this old program, and the new swim club has swimmer's all the way to adulthood, some have even qualified for the Olympic Trials. My thought is to get her really involved with a club now, so when puberty hits, and her tics may increase, she's around people who already know her and what tics are, hopefully not making a big deal out of it.

[Jeff]

That's some very good news, azhorsegal.... I'm keeping my fingers crossed for you and your daughter. Your story is very similar to ours. My oldest daughter started ticcing at around age 7... Her first and second grade years were tough. When she'd sit on my lap, I'd feel her whole body twisting and turning - like you said, nearly every muscle group. A few weeks after we started FG, everything changed. On my lap, she was as still as a stone. I'll never forget that. I don't want to get your hopes up too high, but that was the trigger for us..., and her tics (and her younger sistier's), have never been as bad since we started FG. Yes, we've had our set backs, but we always were able to eventually figure out what was causing it.... either some new food we'd introduced, or some older food that we had just overlooked. She seems to have grown out of the effects of the salicylates, and my younger daughter is tolerating CS better these days (that's a relief... 'cause the CS affected her behavior more than her tics.... she would get really mean, un-focused, irritable, etc. We haven't seen it real bad for several months now. My girls are 14 and 12 now..., and the tics are not an issue - they have not been an issue for several years. We still see them once in a while, but we usually know why, and we know that, with a clean diet, they'll be gone again in 1-3 days. By the way, I tic too. I'm 50 and I've ticced since I was about 7. Lack of sleep, caffeine, and colors are real triggers for me.

 

Wishing you continued relief....

Jeff

[azhorsegal]

Thanks Jeff, and that sitting on your lap story really hit home. It was heart breaking to feel her little body just jumping all over and her inability to sit still, but I just ignored it best I could, knowing it wasn't her fault. Now, these past two weeks, it's been really nice to hold her and I will feel one tic every once in a while, but her body is at peace compared to just two weeks ago. Thanks for your encouraging words and I also wish your girls the best.

 

Edit: Oh, I found ketchup with NO corn syrup in it, Heinz Organic Ketchup. I know you said one of your daughter's has a reaction to tomatoes, so she probably can't have any, but maybe your other daughter can. My daughter doesn't have a reaction to tomatoes, but does with corn syrup, so I was VERY happy to find this. Just wanted to pass on the info.

[Claire]

Great news AZ!

 

I am betting that the Feingold diet did the trick. I know that is all that was needed for Jeff's daughters, as he has told us.

 

As many here have said, food reactions (including preservatives) are like a bucket. Cleaning them from the child's system raises your child's tolerance, where occasional exposure can be tolerated. Maybe your daughter will get lucky and they will just disappear, but if you do go back to the old ways and a month later they are back please note that the reaction can cumulate over time versus instant. The easy way to find out would be to just remove them again.

 

Yes, we use Heinz organic catsup also. Whole Foods is our place of purchase now, so that I don't have to read labels all the time. They aren't quite as thorough as Feingold, but good enough for our purposes.

 

Very glad to hear that your child can still have gluten/wheat without issues!!

 

Claire

[azhorsegal]

Very glad to hear that your child can still have gluten/wheat without issues!!

 

Claire

 

Yeah, that was my biggest worry. I was very happy to see her tics go away even while she was eating gluten/wheat. I have noticed today that her tics are back but still not nearly as bad as they were. I'm pretty sure it's the donut, with sprinkles, she ate yesterday given to her by her Sunday School Teacher. I'm going to have to buckle down and tell her school teacher and sunday school teacher, to not give her anything without my approval. Even if she didn't have a problem, at her age I would have never given her a full size donut, but instead give her only half. And to make matters worse it was just before lunch time!!! Thanks for making it harder on me to get my daughter to eat her entire lunch (which she wasn't able to do). I also gave her Kool-aid the day before, on purpose, to see what would happen. That plus the donut I think made her "bucket" overflow, so no more processed sugars for a while, especially since school is starting on Wednesday.

[Claire]

AZ,

 

By the way, coincidentally I just found a terrific gluten/wheat and corn-free bread mix...FYI just in case you ever determine you need to try wheat/gluten-free again. The others I had had some corn starch.

 

When we went gluten free we got a bread maker and bought wheat-free bread mix from Gluten-free pantry. Man, all his friends choose that bread over any wheat bread.

 

Anyway, Pamela's now has a wheat-free bread mix. It has no wheat/gluten/corn or even milk.

It has variations for pizza dough and pie crust...we just did the pizza tonight, it was terrific!

 

I want to learn to make chicken pot pies sometime.

 

As for the triggers, if you are like most of us, they will be tested again and again over time. Not always good, but on the plus side, over time you become a detective and really really become convinced what makes a difference for your own child.

 

I should volunteer one helpful hint: When it came to events out of my control, I tried to have alternatives there. He HATED not participating. If I didn't have an alternative, we had a deal that I would provide him something at home. Over time he didn't want to eat different food from the other kids, so I would bring acceptable treats to offer the others.

 

Claire

[azhorsegal]

Claire, I actually tried that bread mix from Gluten-Free Pantry, but I don't think I let the bread rise enough, it was a little to compact if you know what I mean, but it was better than my first attempt when I tried to make the bread from scratch. The bread came out like a brick, lol. But with practice I know I'll get it down, especially if I can get a bread machine, what do you use? My daugther's stomach was hurting again this morning and she had waffles (with homemade syrup). So I'm thinking I'm going to have to try going Gluten free just to see if I can stop the stomach pains she's having. She never had them before, but after going gluten free for about 5 days and then putting her back on gluten, she's been complaining of stomach pains, even though her tics have taken a vacation. So now I'm just scratching my head trying to figure it all out. I feel like as soon as I solve one problem another one pops up.

[Claire]

AZ

 

I have an Oster from Target...I think it cost $80 and it was worth every penny. Target has a great retun policy if you don't like it.

 

No way do I have the time or skill to make bread on my own.

 

If your child has issues with corn, then do try Pamela's next. Though I love Gluten Free pantry's bread too and it rose perfectly for me. My huband forgot to add the yeast packet once though and got the brick, ha.

 

You can have other reactions besides tics to foods you are sensitive too. My son never got tics from gluten/wheat but he got diahrea a lot, and excema.

 

Good luck,

Claire

[Claire]

AZ

 

I have an Oster from Target...I think it cost $80 and it was worth every penny. Target has a great retun policy if you don't like it.

 

No way do I have the time or skill to make bread on my own.

 

If your child has issues with corn, then do try Pamela's next. Though I love Gluten Free pantry's bread too and it rose perfectly for me. My huband forgot to add the yeast packet once though and got the brick, ha.

 

You can have other reactions besides tics to foods you are sensitive too. My son never got tics from gluten/wheat but he got diahrea a lot, and excema.

 

Good luck,

Claire