Diet and Waxing And Waning

[Guest bean]

For those of you on gluten free/casein free or whatever restricted diet you are using are you still experiencing waxing and waning of symptoms? My daughter has been gluten/casein free as well as other dietary restrictions for almost five weeks. We were seeing significant improvement in her tics and now all of a sudden they came back this weekend. She has not eaten anything she shouldn't have that I am aware of. I don't think she would cheat, she'd be terrified. So now I don't know if the diet was really helping or is this just part of the waxing and waning cycle. I am very discouraged as I thought the diet would really be the answer. We have been working so hard at this new diet which has been so difficult and now it seems like it's for nothing.Any feedback would be appreciated.

Thanks.

[Chemar]

bean

 

is your daughter diagnosed with actual TS.

 

if so it is normal for tics to wax and wane.

What the diet seems to is reduce the intensity and frequency of the waxing phase.

 

 

Just an aside, I have mentioned on numerous occasions that we and others have noticed a clearcut waxing of TOURETTE tics when the moon waxes.

 

It is that time of month!

 

This lunar effect on neurological conditions is noted in emergency rooms, institutions etc. There are a number of theories as to how the moon influences us, and there is research ongoing on this.

 

I know it sounds SciFi but we have kept a chart now for a number of years and have seen the correlation first hand in my sons tics and OCD

 

However, since we started the supplements and healthy diet these waxing phases accociated with full moon are no longer severe and they are over much faster.

 

We have just come to accept it as part of life with TS

[Gina]

BEAN,

 

Does your daughter have TS? If so remember there is no absolute cure and the waxing & waning of tics are a part of TS.

 

My son has TS and he is on a restricted diet and vitamines. But he has TS and will always have tics. But with these changes it is less severe and less frequent.

 

Another big thing that brings on tics for my son is seasonal allergies. Hayfever, trees, flowers, grasses etc. Every year around April my sons tics are at thier worse I believe it is completely environmentally related. Unfortunatly I am still working on how to help that one.

 

And than there is our Ol' Faithful: STRESS. Big tic trigger for my son and husband.

 

Check out the rest of whats going on in her day to day life and see if there are any triggers there.

 

But most of all don't get discouraged. For every Down theres an Up.

 

Good Luck

Gina

[Guest Jeff]

Bean, Has she been sleeping well lately? Lack of sleep is a definite trigger for me.

Jeff

[Guest bean]

Thanks for all your replies. It so hard when it seems like we take two steps forward and one step back.

 

 

Chemar: We do not have a TS dx at the present time however the one year criteria is the only thing missing for an official dx. On Jan.2 it will be one year. Tic disorder is what the dx is for now although the doctors and I am reluctant to give her a TS dx.

As far as the moon, I have been reading your posts and I have to say I did check and notice the full moon. I must say I wouldn't have believed it if I hadn't seen it myself.Although, I wouldn't have believed almost a year ago this would be my life either.

It's just so discouraging because I didn't believe the diet would make a difference and I really did see major improvement. We'll keep at it and hope this phase will pass.

 

Gina: Yes, my daughter has hay fever and seasonal allergies in addition to the recently diagnosed food allergies. I definitely agree it plays a role. Her tics are mainly coughing and sniffing.

 

Jeff: Yes, I think lack of sleep is an issue. She sleeps well and always has but it was a busy weekend with late nights. The tics did increase the day after a house full of people and a late night with a friend sleeping over Sat. night. She woke up Sunday after the sleepover with a major increase in tics.It's Thursday and they are still here. It's like a bad hangover that lingers on.

 

Thanks again for your feedback.

[Claire]

bean,

 

Please don't get discouraged! The lower baseline that the diet provides should actually help you find other triggers.

 

I am glad Jeff brought up sleep, as that is definitely something to look for, plus simply not having enough down time increases stress levels.

 

I think triggers can last up to a week, so if it was a temporary trigger (vs waxing and waning) you should see improvement by then.

 

I must ask: What about increased computer games/TV/gamboy exposure with all the house guests?

 

Claire

[Guest bean]

Claire,

I know I've read alot about TV/Gameboy/computers being a problem but I don't think they are a trigger. Actually, sometimes I think TV calms her down a bit. Well, it has been a week and I do see improvement. I hope you're right about the one week trigger.

Thanks!

bean

[Andy]

It is easy for a parent to get upset but being a parent we could never give up. We saw alot of success when we first did the new diet, then tics. We again saw alot of success when we found out what his body was lacking and did supplements. We seen even more success when we limit TV/Computer at home till almost nill. However, if he was born with TS or if it was induced by another agent,( Vacanation shots, lingering infection), the bottom line is he still has a weaken body and will tic when sick, especially with a fever, or when over tired. The key is with everything we do and teach him, he is taking control over the tic and the tic is not controlling him. Just because he has this issue doesn't mean he can't be stronger then others in mind, spirit, and soul. Give this time and I believe you will see results that will make you glad that your family became proactive with this issue. We all have fears, we all want the best for our kids and with that said I would like to take this time to thank those adults who have this issue who give their insight to us parents who are trying to do what's best for our kids until our kids are old enough to make all of thier own decisions.

[Claire]

And thank YOU Andy. I always love your posts. Heartfelt, and full of kindness. You must be a wonderful father.

 

Your experience with special ed is invaluable here, and of course your sharing on what you have learned re tics. I always read them--even though I don't normally comment.

 

Claire

[Andy]

Thank you too Claire. I think most of us read most of each other posts and all walk away with either learning something new or being reassured that we are going up the right street in terms of treating TS.