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Tics & Supermarkets & doctors & tablets....does this happe


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Hi

 

I have began to notice that we when go to certain places my his tics get worse. Does this happen to you?

 

I am trying to check if its just an accident and will double check next time we go to these places again

 

anyway what happend...

 

we were driving in the car going to the supermarket his tics were very mild and somewhat undercontrol we enter the supermarket the minute we enter his head movements start more frequently and severly so does his eye blinking....literaly the moment we put foot inside the supermarket

 

then

 

while he was driving I took some bread from the back seat and made myself a ham sandwich the air conditioning was going and windows closed. the moment I opened the bread bag he started ticcing.

 

then went to doctors and same thing happened. The moment we sat down at the doc he started ticcing.

 

he has tic so he is always ticcing but the go from mild to bad quickly

 

anyway I again asked him how he felt I massaged his head just incase he was stressed but seriously he looked relaxed and he confirmed that he felt relaxed when we walked into the doctor and sat down..

 

I guess it could be a coicidence that certain places cause more tics?

 

meds

 

I also notice that he has troble swallowing medicines as his toungue does not do the normal thing - toungues do when one says "Ahhhhhh" his tougue does not lie flat but rolls up it seems like he can't get his toungue to go flat so that doctos can examine him. He usually prefer poders to tables he can break into pieces as he is afraid he will choke with the pill. I think this might be because of the flem in his throat which he feels restricts his throat and makes him want to grunt and clear his throat - this is what he has told me.

 

Body temperatue

 

He also seems to complain often of feeling hot and seems to sweat quite a fair bit.

 

antibiotics

 

when we started on the antibiotics his symtoms seem to be getting better and better gradually but I am still putting the pieces together so that I can do futher test with the doctors.

 

Pandas

i hear that most people with pandas when they are sick their symptoms get worse but thats the opposite with my boyfriend, when he is sick his tics get better. he alsmost looks like he doesn't have tourettes at all. I am trying to make sense of this? I don't understand why a pandas individual would (tics get worse) if they are on long term antibiotics? woudn't the antibiotics prevent the tics or infection coming on strong?

 

him on antibiotics

 

when his on antibiotics his symtoms die dow and he feels "heathy" it stop him from sweating, make him feel more calm and tic less.

 

Still doing investigating on this have a few ideas about whats going on but its tricky but I am slowly putting the pieces together and still waiting for blood exams to

 

He was diagnosed with tourettes when he was 13 but I am begining to think it might be a somthing else that resembles tourettes come back!

 

any suggestions welcome!

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yes my son has similar experiences - we can be at home and he is not ticing, as soon as we get in the car and shut the door, the tics start, or as soon as we go into where we are going, like a big store, the tics immediately start, and again stop when we get home. Maybe this is some kind of deep seated generalized anxiety that the child is not even aware of themself? Is it the air? is it the lights? i have no idea. Maybe just too much stimulation? I dont know but it is interesting.

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My son tics like crazy at home and in the car. He does a really good job of holding them in when we are in public. We went to Busch Gardens on saturday and he was tic free the whole time we were in the park but the minute we got in the car he was tic crazy!

 

His teachers always said that they never saw him tic. Now that I homeschool I notice that he tics the worst when I ask him to read outloud.

 

Sunflower, is it hard for your boyfriend to drive when he is ticing? I am scared at the idea of my son driving. Are there any laws restricting his license?

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  • 3 weeks later...

Our daughter's first symptoms of PANDAS/tics was the fact that she would start acting weird as soon as we went into a supermarket. She would start flapping her arms and having verbal tics (before I knew they were tics) 18 months later after diagnosis and antibiotics she still has tics if we walk into a mall or grocery store. We live in Indonesia now. She is around flourescent lights all day but for some reason the second we walk into the mall she'll start to tic. Sometimes it will be a new tic and it will stick around for a couple of weeks. Thankfully we live in the middle of no where and we don't go to the mall that often!!!! I was wondering about chemicals used on clothing as a trigger? There is a store that sells surplus export clothes that are made in Indonesia. That is just a small store but it really seems to trigger her too.

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Sunflower,

I read through your post and noticed your boyfriend has some symptoms of food intolerance/allergies. It couldn't hurt to check it out, if he hasn't already gotten antibody testing done. We have a son who has been stable and with very minimal symptoms since we began a very strict gluten and corn free diet for him. He only tics after being exposed to gluten and corn in my opinion. We also practice an organic, additive, preservative, and color free diet as well as include daily supplements.

Does bright light bother your boyfriend? Flashing screens? Does he remember his dreams when he wakes up?

 

 

I have began to notice that we when go to certain places my his tics get worse. Does this happen to you?

 

I am trying to check if its just an accident and will double check next time we go to these places again

 

anyway what happend...

 

we were driving in the car going to the supermarket his tics were very mild and somewhat undercontrol we enter the supermarket the minute we enter his head movements start more frequently and severly so does his eye blinking....literaly the moment we put foot inside the supermarket

 

then

 

while he was driving I took some bread from the back seat and made myself a ham sandwich the air conditioning was going and windows closed. the moment I opened the bread bag he started ticcing
Could be a wheat allergy. Some Celiacs say their allergies are so severe that inhalation will cause major symptoms. They do not work with dough/playdoh as it will cause a reaction (Same with paper mache).

 

then went to doctors and same thing happened. The moment we sat down at the doc he started ticcing.

 

he has tic so he is always ticcing but the go from mild to bad quickly

 

anyway I again asked him how he felt I massaged his head just incase he was stressed but seriously he looked relaxed and he confirmed that he felt relaxed when we walked into the doctor and sat down..

 

I guess it could be a coicidence that certain places cause more tics?

 

meds

 

I also notice that he has troble swallowing medicines as his toungue does not do the normal thing - toungues do when one says "Ahhhhhh" his tougue does not lie flat but rolls up it seems like he can't get his toungue to go flat so that doctos can examine him.
(This is also a sign of food intolerance/allergy. It is reported that gluten sensitive people get swollen tongues and also frequent canker sores/mouth ulcers)
He usually prefer poders to tables he can break into pieces as he is afraid he will choke with the pill. I think this might be because of the flem in his throat
(another sign of a food allergy situation)
, which he feels restricts his throat and makes him want to grunt and clear his throat - this is what he has told me.

 

Body temperatue

He also seems to complain often of feeling hot and seems to sweat quite a fair bit (this is another symptom often reported by celiacs/gluten sensitive people. Does he get really tired after eating food with bread? Does he also get cold extremities after eating?

 

antibiotics

 

when we started on the antibiotics his symtoms seem to be getting better and better gradually but I am still putting the pieces together so that I can do futher test with the doctors.

 

Pandas

i hear that most people with pandas when they are sick their symptoms get worse but thats the opposite with my boyfriend, when he is sick his tics get better. he alsmost looks like he doesn't have tourettes at all. I am trying to make sense of this? I don't understand why a pandas individual would (tics get worse) if they are on long term antibiotics? woudn't the antibiotics prevent the tics or infection coming on strong?

 

him on antibiotics

 

when his on antibiotics his symtoms die dow and he feels "heathy" it stop him from sweating, make him feel more calm and tic less.
Be sure he takes a good probiotic like healthy trinity after the course of antibiotics. If he has gut issues it is very important. Antibiotics kill both the good and bad bacteria. Our bodies need good bacteria to help breakdown and digest our food.

 

Still doing investigating on this have a few ideas about whats going on but its tricky but I am slowly putting the pieces together and still waiting for blood exams to

 

He was diagnosed with tourettes when he was 13 but I am begining to think it might be a somthing else that resembles tourettes come back!
Has he had a gluten intolerance or celiac screening? Allergy testing? He should look into a white blood cell test like the Alcat
or celiac/gluten intolerance testing at enterolabs.

 

Hope this helps.

Caryn

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Caryn,

I am thinking of having my son tested for gluten intolerance. He just had a physical and the doctor did a blood test for Celiac Sprue which turned out normal. Per the Entero Lab link you listed I am thinking of using it for my son. Do you recomment the Complete Sensitivity Stool and Gene Panel, or just the Stool Test for Gluten Sensitivity. The gluten sensitivity is alot cheaper so just wondered if the whole panel really needs to be run.

Thanks for your help, Anne.

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increased tics in cars, fluorescent lighting, pesticided environments (indoors and outdoors) etc are common for people with TS, and yes, excitement, nervousness, anticipation and even self consciousness can increase tics.

here is Sheila's tic trigger article from Latitudes home site again

http://www.latitudes.org/articles/finding_triggers.htm

 

and just to reassure.........my son is now driving and is doing just great with it. Interestingly for my son, when he is steadily focussed on something, his tics have always reduced. I have heard others say similar.

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I am thinking of having my son tested for gluten intolerance. He just had a physical and the doctor did a blood test for Celiac Sprue which turned out normal.

 

Anne,

 

Do you know if they tested your son's total IGA? If someone is IGA deficient their Celiac screening can show a false negative. The Enterolab tests are also IGA based so you should ask about this (get copies of the results) before ordering the Enterolab tests.

 

--Judy

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I am thinking of having my son tested for gluten intolerance. He just had a physical and the doctor did a blood test for Celiac Sprue which turned out normal.

 

Anne,

 

Do you know if they tested your son's total IGA? If someone is IGA deficient their Celiac screening can show a false negative. The Enterolab tests are also IGA based so you should ask about this (get copies of the results) before ordering the Enterolab tests.

 

--Judy

 

 

I found the lab statement which lists the blood test as endomysial AB, IGA (reflexive). So, would the stool test through Entero Labs basically be a repeat test even if one is blood and one is stool? Not sure what to do. Please advise. Thanks, Anne

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Anne,

This link provides a lot of information on testing for Celiac Disease and gluten sensitivity

http://jccglutenfree.googlepages.com/diagnostictesting

 

I copied the explaination below from it

A complete celiac panel includes the following tests:

antigliadin IgA and IgG (indicates gluten sensitivity)

anti-tTG and/or anti-endomysial

total serum IgA (rules out IgA deficiency)

anti-reticulin IgA

 

To save cost, this panel is often reduced to a single test...usually the anti-tTG. Many "experts" consider the gliadin and reticulin antibody tests as optional and outdated. It is said that antigliadin antibodies are not specific to Celiac Disease, but they are often the first to show and are of increased significance for those who may have gluten sensitivity manifesting as neurological disease.

 

The least expensive route to go would be to have you doctor run all of the above listed tests (if your insurance will pay). If he will not you could self order through Enterolab but you still do not know if your child is IgA deficient. My kids (who at this point have "presumed" Celiac) all have very low total IgA and the only blood tests to come out positive were the antigliadin IgG. I am not sure if they would have tested positive through Enterolab because of this.

 

Also keep in mind if you have your doctor run the gene tests for Celiac they only test for HLA DQ2 and HLA DQ8. Gluten sensitivity can also be associated with HLA DQ1 and I think that Enterolab is the only lab that routinely tests for this. More on Gluten Sensitivity as a Neurological Illness can be found on the link I listed above.

 

--Judy

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