How long to see improvement

[Malke]

Hi,

 

DD5 has been suffering from a host of neuropsych symptoms since November and things are improving with attention to inflammation (Enhansa, Ibuprophen). We're still not clear about the trigger.

 

Unfortunately, the only thing that has not improved and that has actually worsened are her facial tics.

 

I have been documenting food/behaviors/tics for over two weeks now and see no correlation to when the tics calm down or when they flare.

 

DD has been off gluten, casein, soy, corn and yeast for 13 months. She never had a tic before this last November. She's been off eggs for two weeks. I took her off chocolate a week ago. I upped her magnesium a couple weeks ago to 400mg/day (divided doses). I've recently pulled garlic, onion and mustard but it is too soon to tell.

 

My question is -- how long do I have to wait to see improvements if I pull a food? A week? Two weeks?

 

thanks,

Malke

[Cj60]

Hi Malke,

 

When we started what was to us a rather drastic diet change, but no where nearly as drastic as yours has been, and some regular supplements, we noticed a general calming of tics within a few weeks. But we were still noticing them plenty. We didn't have a "wow, that's a really noticeable change" moment until we added his multivitamin a few months ago, and that change came quickly, within a few days.

 

I would say it takes time to wean your system of some things, but you've been at this for a while now. I see you don't list dairy as an eliminated food. Dairy was (is) an issue with my son, and I believe that it was a long time in getting out of his system. We had a ski trip last weekend (I'm sad to see the snow go, but maybe I'll be able to save a little $ now), and allowed him a loose diet, including pizza one day and cheese on his taco the next. He had noticeably raised tic levels for the next few days. I'd like to say for sure it was the cheese, but he also ran a mild cold after the trip, so I can't be 100% sure. Though I have not noticed increased tics with colds before...

 

Anyway, I'm sure you've considered dairy. And it wouldn't be a quick challenge, since it takes a while to clear from the system.

 

Good luck with your efforts,

 

Chris

[Malke]

Hi Malke,

 

I would say it takes time to wean your system of some things, but you've been at this for a while now. I see you don't list dairy as an eliminated food. Dairy was (is) an issue with my son, and I believe that it was a long time in getting out of his system. We had a ski trip last weekend (I'm sad to see the snow go, but maybe I'll be able to save a little $ now), and allowed him a loose diet, including pizza one day and cheese on his taco the next. He had noticeably raised tic levels for the next few days. I'd like to say for sure it was the cheese, but he also ran a mild cold after the trip, so I can't be 100% sure. Though I have not noticed increased tics with colds before...

 

Anyway, I'm sure you've considered dairy. And it wouldn't be a quick challenge, since it takes a while to clear from the system.

 

Thanks Chris,

 

Actually, casein is the milk protein, so it's in milk and cheese and also even in things that don't seem like dairy -- it was in her soy cheese, for example (go figure).

 

I'm thinking I'll just try to be patient and if things don't change in the next two weeks I'll dig into it again. It's hard to be patient.... ;-)

 

Malke

[ladyd]

Have you tried reducing screen time?

[Malke]

Have you tried reducing screen time?

How much is too much? She doesn't use computer or play video games. The only time she has is during her Quiet Time when she watches videos, but usually she's drawing or making something at the same time or dancing along.

[Chemar]

Hi

 

re screens....if your child is not having photosensitive induced tics then screen time should not be a factor. For those who do have photosensitivity, it is not just the amount of screen time but the type of screen flicker that causes the tics. LCD screens are ok but CRT not

 

I just am always cautious to remove screens from someone who does not need it as then the child feels punished for ticcing IMHO, although yes, if there IS photosensitivity then it is important to limit screen time and be sure to only have LCD screens

 

re the foods...again, one will only see benefit if the patient is in fact sensitive to those specific foods and the improvement is usually pretty obvious (IMHO everyone has some form of sensitivity to the artificial additives so always good to remove those)

 

If you are not seeing a clear benefit from restricting food groups then you may be dealing with something else triggering the tics.

Sorry that I don't recall the details of your situation, but do you have a family history of tics/Tourette Syndrome? Have you looked into the infection induced tics eg PITAND/PANDAS

[Malke]

re the foods...again, one will only see benefit if the patient is in fact sensitive to those specific foods and the improvement is usually pretty obvious (IMHO everyone has some form of sensitivity to the artificial additives so always good to remove those)

 

If you are not seeing a clear benefit from restricting food groups then you may be dealing with something else triggering the tics.

Sorry that I don't recall the details of your situation, but do you have a family history of tics/Tourette Syndrome? Have you looked into the infection induced tics eg PITAND/PANDAS

 

If it's food related, I think it's something I haven't found yet, but I'm still looking/experimenting.

 

We are free of artificial additives. Pretty much 100% whole and lightly processed foods.

 

There is some family history of tics, but limited. I originally thought all this was PANDAS, but we have no clear infetious trigger, no known strep event except for me getting sick last Jan (2010) and using an probiotic for 6 months with a strep strain in it. Her titers showed no evidence of recent or past infection for Strep, but I know this doesn't always mean that strep is not involved. Her CBC and other blood chemistry shows everything 'normal' in that regard, and no thyroid issues.

 

Can chronic lyme cause tics?

 

Thanks for your thoughts.

[Chemar]

 

Can chronic lyme cause tics?

 

 

 

absolutely yes! Do you suspect Lyme?

 

we do now have a dedicated Lyme forum here

http://www.latitudes.org/forums/index.php?showforum=19

[Malke]

 

Can chronic lyme cause tics?

 

 

 

absolutely yes! Do you suspect Lyme?

 

we do now have a dedicated Lyme forum here

http://www.latitudes.org/forums/index.php?showforum=19

 

I think a LLMD is our next stop. Considering we have neighborhood deer numbering in the 20's, who also hang out in our yard, I think it would be worth checking out, even though when we started abx she only got better, no herxing. Hmmm...I think it'd be a good thing to rule out, though.

 

She's two days off garlic and one off mustard (newly documented IgG allergy for mustard) and I think I've seen some improvements. It seems to go good day/bad day/good day/bad day though, so I'm still watching and recording.

 

Thanks for your help!

[smartyjones]

, I think it would be worth checking out, even though when we started abx she only got better, no herxing. Hmmm...I think it'd be a good thing to rule out, though.

 

 

malke -- i'm not saying your child has lyme b/c of course, i certainly can't know -- however, i don't believe no herx with abx rules it out. i think many people do herx, but i don't know that not herxing, means anything. that may be something to post on the lyme board.

 

when my ds was first diagnosed with pandas, he was on azith for 5 days. it was terrible. some behaviors we had seen improvement with from a naturopathy course returned with a vengenance. he improved when off the abx. i now do wonder if this was a herx that i know more about lyme and he was later diagnosed with lyme. he had previously (a couple of years) earlier been on azith without a problem. at the time, i thought it was a reaction to the azith. still not sure i'd ever have him on that again.

 

however, we switched peds, did 30 days of keflex and nystatin. (ds did have elevated titers and a positive culture for strep). he had 100 % remission in about 3 days on the keflex. however, it didn't hold and we later found lyme, among other infections.

 

so i think at that time, the keflex addressed the issues that we were seeing at that time. he just relapsed and we investigated further.

[ladyd]

Just wanted to day, regarding screens, that our son tics more during television watching, but he doesn't watch tv too much to begin with. Flat screens are more problematic that our older not flat tv. His tics also worsened after playing too much wii over the holiday break. So screen time is monitored and reduced but not totally eliminated.

Edited April 3, 2011 by ladyd

[fencelatitude]

What multivitamin are you using?

 

Hi Malke,

 

When we started what was to us a rather drastic diet change, but no where nearly as drastic as yours has been, and some regular supplements, we noticed a general calming of tics within a few weeks. But we were still noticing them plenty. We didn't have a "wow, that's a really noticeable change" moment until we added his multivitamin a few months ago, and that change came quickly, within a few days.

 

I would say it takes time to wean your system of some things, but you've been at this for a while now. I see you don't list dairy as an eliminated food. Dairy was (is) an issue with my son, and I believe that it was a long time in getting out of his system. We had a ski trip last weekend (I'm sad to see the snow go, but maybe I'll be able to save a little $ now), and allowed him a loose diet, including pizza one day and cheese on his taco the next. He had noticeably raised tic levels for the next few days. I'd like to say for sure it was the cheese, but he also ran a mild cold after the trip, so I can't be 100% sure. Though I have not noticed increased tics with colds before...

 

Anyway, I'm sure you've considered dairy. And it wouldn't be a quick challenge, since it takes a while to clear from the system.

 

Good luck with your efforts,

 

Chris

[Cj60]

Hi,

 

My son (9) has been having @ 1.5 tsp. each morning of Kirkman's Spectrum Complete (powder). Megan (Mommyfor4)started a thread a few months back in which she and Lisa (Mythree) commented on noticeable improvements with their newly added multivitamins (Megan uses a brand named Progressive), so I figured I'd give it a shot. I'm very happy I did!

 

Chris