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Tic explosion and upset stomach


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#1 starlygirl

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Posted 05 June 2012 - 02:17 PM

My son has a tic disorder, but we haven't determined if there is a PANS component to it yet or not. He had a sudden, severe onset of vocal tics 4 months ago after an illness. He'd had some mild motor tics intermittently prior to that. The vocal tic was severe for about 2 months, then slowly improved to the point that it is still there, but has been quite minimal for the past 2 months (anywhere between 5-20 vocal tics per day).

So, something weird happened today. He's just starting to learn how to swim & he keeps gulping air & swallowing pool water which results in a stomachache & gas pains after swimming. Today, the pains were very bad and he actually ended up throwing up a bunch of pool water. 30 minutes prior to throwing up, he suddenly started doing the vocal tic CONSTANTLY - every few seconds for 30 minutes. Then he threw up & the ticcing stopped about 5-10 minutes later. Would something like this happen with a PANS child?

I'm leaning towards this not being PANS, because it wasn't a virus or bacteria that caused him to throw up, so it wouldn't have been an autoimmune reaction. Also, the tics went away very quickly afterwards. It was so strange how the severe tics were clearly connected with the upset stomach. Does this sound like more a Tourette's type of reaction? I'm wondering if he was ticcing so badly just because he was upset/stressed that his tummy hurt? Or maybe it was a physical reaction to the chlorine? Thanks for any insight anyone might offer!


#2 1tiredmama

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Posted 05 June 2012 - 04:17 PM

Hi! My ds has been ticcing for 7 years (just dx'd PANDAS.) I'm thinking that the stress of the stomach upset aggravated the tics. This stress-tic relationship occurs in both PANS and Tourettes. Think of the tic "condition" as autoimmune, the ups and downs (waxing and waning) are part of the condition. Increased ticcing can occur during illness, stress (even good stress,) or for unknown reasons.

I would not discount PANS based on this event.

Welcome to the forum! :)
DS18 dx'd PANDAS in 2012, 14 years after first symptoms appeared
DS15 Happy and healthy!
DD12 dx'd PANDAS in 2012, 9 years after first symptoms appeared

#3 Fixit

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Posted 06 June 2012 - 10:27 AM

mom of pans ticcers here.
ds, when exposed to clorine can increase his tics..depending on status of his current immune condition.
ingesting clorine will further disregualte your digestive tract and therefore immune system..and will either reamin the same or increase the condtion.
when ds throws up...he stops ticcing.
ie..if he is thowing up one day he doesn't tic that day..
if he throws up for 2 days...no tics those 2 days
So for my ds, i see a direct correlation between tics and his digestive tract, immune system.

#4 starlygirl

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Posted 08 June 2012 - 06:10 AM

Thanks for the replies. FixIt, that's weird that your DS doesn't tic if he's throwing up. Why do you think that happens exactly or is it just a mystery? I'd have guessed with a PANS child that if they were ill with a stomach flu, their immune system would be activated & they'd tic more. Guess there's no hard-and-fast rules.

I've been searching google for information about chlorine having an effect on the nervous system, but am not coming up with much. That was just the weirdest event ever - the tic explosion was obviously somehow connected to either the upset stomach or the chlorine. He's been "normal" ever since but now I'm afraid to take him swimming again! Maybe what happened doesn't sound so weird to people that have been dealing with Tourette's or PANS for a while, but it's really making me scratch my head trying to figure out what the heck happened to cause it.

#5 fcefxer

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Posted 08 June 2012 - 06:46 AM

Thanks for the replies. FixIt, that's weird that your DS doesn't tic if he's throwing up. Why do you think that happens exactly or is it just a mystery? I'd have guessed with a PANS child that if they were ill with a stomach flu, their immune system would be activated & they'd tic more. Guess there's no hard-and-fast rules.

I've been searching google for information about chlorine having an effect on the nervous system, but am not coming up with much. That was just the weirdest event ever - the tic explosion was obviously somehow connected to either the upset stomach or the chlorine. He's been "normal" ever since but now I'm afraid to take him swimming again! Maybe what happened doesn't sound so weird to people that have been dealing with Tourette's or PANS for a while, but it's really making me scratch my head trying to figure out what the heck happened to cause it.


My DD has "ticced" since age 6 (she is now 20) and we never knew about pANDAS till she was about 15-16. What I didn't know till very recently and through the guidance of our AMAZING psychologist, was the tic is a compulsion (in her any way)Surprising that most times our kids don't tell us what's going on in their head because to them it's a normal state. So the tics increase as she is having bad thoughts. She too had vocal tics which thankfully are not here now. So tics could be the visible symptom of OCD.

Also, from our DAN, many of our kids do not make enough stomach acid and this sets off a bad chain of evens. First, they do not digest fully so you see refulux as the stomach acid jumps up, trying to hit the food. Also, we do not get the needed minerals from food and therefor can not make needed brain neurotransmitters needed for good mental health (zinc, mag.....)lastly undigested food circulating throughout the body sets off histamine which sees these food chunks as enemies, putting the body in an opiate like state, which in essence, makes them high. Poor digestion is the main cause of consistent nausea. Sooooo, the treatment is a supplement called Betaine. One capsule is taken with each meal for about 2 weeks. If no burning/ hot feeling is detected, the dose is increased to 2 per meal. After awhile, it teaches the stomach to produce more stomach acid. This higher amount is also a lower Ph. The benefit of lower Ph is that yeast and parasites can no longer thrive in the GI tract, causing their own problems. After awhile, when the stomach has started to increase the stomach acid, it will begin to feel hot when ingesting 2 capsules and you reduce to dose to one. When heat begins to accompany that dose, you no longer need them. This also assists in digesting medication well enough.

Nancy

#6 Fixit

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Posted 08 June 2012 - 07:05 AM

Thanks for the replies. FixIt, that's weird that your DS doesn't tic if he's throwing up. Why do you think that happens exactly or is it just a mystery? I'd have guessed with a PANS child that if they were ill with a stomach flu, their immune system would be activated & they'd tic more. Guess there's no hard-and-fast rules.

I've been searching google for information about chlorine having an effect on the nervous system, but am not coming up with much. That was just the weirdest event ever - the tic explosion was obviously somehow connected to either the upset stomach or the chlorine. He's been "normal" ever since but now I'm afraid to take him swimming again! Maybe what happened doesn't sound so weird to people that have been dealing with Tourette's or PANS for a while, but it's really making me scratch my head trying to figure out what the heck happened to cause it.


YOur saying that your ds is tic free right now,,right?
what i was thinking for your ds is that maybe he purged the problem out of his system by throwing it up and the stomach accids became so high that the rest was elimated out of the bowels. So maybe he had a parasite, strep in the gut, other? Maybe the upping of the tics was a herx prior to the the final elimination?

yes it is weird for my ds..
i am constantly searching what is going on with his g.i.
as mentioned in a post to fcefxr..when i put ds on the parasite cleanse he responds sooooo well.
it treats parasites and candida and detoxs...but you are not suppose to stay on it more than 3 weeks and then you can redo a couple times, a few weeks apart.
though i think ds would have been a swedo poster child with strep, tic onset and then standard course of abx(ie 10days) administerd, i would get full 100% remission w/i weeks. but do to the numberous times of onsets..did it become chronic, autoimmune, or is his gi so messed up that that is the real problem?
The first of the many years of onsets, i did not give him probiotcs as i did not know. So i was probably, slowing creating a systemic yeast infection, which then cascades into other systems in the body becoming disfunctional.
The healthforce prodcut also conatins milk thistle which increases glutithione....so is it that?
I think the concentratinons in it are higher than we might administer on our own. When at full dose ds takes 8 pills at one time. A full adult would take 10.
i have researched that product and tried to seperate out the components to see what is the miracle in it for him..i just can't seem to pin it down. Maybe he has systemic parasites, candida, and needs glutithione(all three) and that is why i always see such postive results with that one product.
Like alot of parents here...still searching for his real,current trigger.
The trigger one time might not be the same the next.
Now in a hyper senstive state, almost everything can be a trigger!
Ds has not had strep in 4 years. It had gotten to the point that i knew he had strep as he would tic, with no signs of illness. Tics even came prior to culturing positive. would have to go back in a few days later to reswab and then come up pos. Then we would get the abx and ds would remit 100%. But of course the F(*&^%% dr's said i was crazy for all the years i kept telling them that there was this correlation. Please, i still get so angry.


And again, not something that everyone agrees with, but imho, no ts gene. You would think they would have found it by now. It is all some disregulation within the immune system. Now you have to go find it.
This is based on observation of my children, 2 of 3 in remission, a DH who does better on abx and getting tonsils out(next going to treat extreme candida for him), Knowing several people with sudden onset ts..know a few who had it go away in teens and come back as an adult after stress, and illness.

#7 Fixit

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Posted 08 June 2012 - 07:32 AM


Thanks for the replies. FixIt, that's weird that your DS doesn't tic if he's throwing up. Why do you think that happens exactly or is it just a mystery? I'd have guessed with a PANS child that if they were ill with a stomach flu, their immune system would be activated & they'd tic more. Guess there's no hard-and-fast rules.

I've been searching google for information about chlorine having an effect on the nervous system, but am not coming up with much. That was just the weirdest event ever - the tic explosion was obviously somehow connected to either the upset stomach or the chlorine. He's been "normal" ever since but now I'm afraid to take him swimming again! Maybe what happened doesn't sound so weird to people that have been dealing with Tourette's or PANS for a while, but it's really making me scratch my head trying to figure out what the heck happened to cause it.


My DD has "ticced" since age 6 (she is now 20) and we never knew about pANDAS till she was about 15-16. What I didn't know till very recently and through the guidance of our AMAZING psychologist, was the tic is a compulsion (in her any way)Surprising that most times our kids don't tell us what's going on in their head because to them it's a normal state. So the tics increase as she is having bad thoughts. She too had vocal tics which thankfully are not here now. So tics could be the visible symptom of OCD.

Also, from our DAN, many of our kids do not make enough stomach acid and this sets off a bad chain of evens. First, they do not digest fully so you see refulux as the stomach acid jumps up, trying to hit the food. Also, we do not get the needed minerals from food and therefor can not make needed brain neurotransmitters needed for good mental health (zinc, mag.....)lastly undigested food circulating throughout the body sets off histamine which sees these food chunks as enemies, putting the body in an opiate like state, which in essence, makes them high. Poor digestion is the main cause of consistent nausea. Sooooo, the treatment is a supplement called Betaine. One capsule is taken with each meal for about 2 weeks. If no burning/ hot feeling is detected, the dose is increased to 2 per meal. After awhile, it teaches the stomach to produce more stomach acid. This higher amount is also a lower Ph. The benefit of lower Ph is that yeast and parasites can no longer thrive in the GI tract, causing their own problems. After awhile, when the stomach has started to increase the stomach acid, it will begin to feel hot when ingesting 2 capsules and you reduce to dose to one. When heat begins to accompany that dose, you no longer need them. This also assists in digesting medication well enough.

Nancy


Hey Nancy, we must have been typing at the same time. I forgot about the Betaine. i know you are do gf...i forget, are you doing df too?.
God such a hard road..we did gfdf for 3 months..even checked things like ketchup and no carmels or carmel coloring, etc...we almost starved to death and the food bills were sooooo expensive.
Oh to wrap my head around that again..i am going to need some real support.

#8 hugs2day

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Posted 08 June 2012 - 09:34 AM

My son's (9 year old, typical) tics also go into remission if he has been sick vomiting its an overnight cure but never lasts more than a few days.

He also takes pepcid not pepsin. Are these two supplements the opposite? I have never heard of betaine (pepsin) but I am going to research for my other son (7 year old) that has never thrown up in his life and also has autism and major gastro issues.

Two boys with PANDAS sudden onset 3 weeks apart in 10/2010- DS10 and DS8.


#9 starlygirl

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Posted 08 June 2012 - 04:38 PM

YOur saying that your ds is tic free right now,,right?


Hi Fixit, He's not 100% tic free, but he only has about 5-10 tics per day (a vocal tic "cough" type of sound) - it's been mild like this for the last 2 months. It was only for that 30 minute period after we got out of the pool & before he threw up that he was ticcing every few seconds. There was definitely something in that pool water that did not agree w/ his system (both digestive & neurological!).

So, that's crazy that both your son and Hugs2Day's son's tics disappear for a while after throwing up!

Edited by starlygirl, 08 June 2012 - 04:39 PM.


#10 Wombat140

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Posted 09 June 2012 - 09:36 AM

That's funny. My OCD and tics are often less for a few hours after I've vomited - even when it seems to have been a return of my old abdominal migraine, rather than any kind of bug. I don't know what kind of biological nonsense THAT is.

Born 1990. Always had slight Asperger's traits but got along fine. Severe OCD struck almost overnight in 2003. Varied randomly from month to month since then, almost gone once or twice, but never completely. Very bad indeed since spring 2012 and shows no signs of improving.

Symptoms: all sorts of things (written words, smells, things people say) mysteriously "will not do" and require a compulsion to be done before I can go on. No obsessions - in that way, and in physical nature, the rituals are almost like tics except that they're always a response to something particular. Extreme sensitivity to particular sounds, although that comes and goes over months.

Wondered if it might be PANDAS - in August 2012 I finally managed to locate a doctor who knows about it. Tried Azithromycin, co-amoxiclav (Augmentin) and tinidazole, but to no clear effect. No test results as yet - fluffed three attempts to get blood sample taken.

 

Have now been seeing homoeopath since summer 2013.  Results have been mixed, there have been definite improvements at times but they haven't lasted.  No luck at all for the last few months - in fact, since this month's remedy (Aug 2014) things are noticeably worse.


#11 Fixit

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Posted 10 June 2012 - 07:09 AM

That's funny. My OCD and tics are often less for a few hours after I've vomited - even when it seems to have been a return of my old abdominal migraine, rather than any kind of bug. I don't know what kind of biological nonsense THAT is.


HI Wombat...i've seen you on the ts board. There is alot of good info here. The thing is too read and sift through it all. Daunting. I still don't always make the connections. Or once i do i cant seem to remember how i got there.
anyway, i find it interesting that you have a similar connection. it is nice that as an adult you can vocalize what you are experiencing and opposed to just witnessing and pulling the info from the child w/o trying to feed them the info that you are looking for,,,ie not to leed the witness.

Someone on here once talked about abdominal migranes???? i think that really helped them as a key to getting remssion or close to it, i think, but i don't remember the whole gist. Put that in the search section see if it pulls that up.

HOw did you figure out you had adominal migranes?

yes, the gut seems to be more than saying give probiotic, detox, get rid of the parasites, treat candida, are there enough amino acids, is the ph to high or low, etc..its the sum of it all.
But as i procede, the hard part is the gut is a SLOW healing entity. So you continue to treat and maintain all the parts and see if you are missing any key/other elements. ANd to measure healing over months, not days and weeks, especially in the area of the gut.
Even though my 2 younger are in remision...i contune probiotics, and make sure the have bowel movements. That was a big miss step for my first child and i believe that is also the case of my dh who has pans. He is an adult that used to get strep severalt times a year for a known 30yrs or more and i am certain, that not until the last 10, were probiotcs even thought of..he does have terrible candida. And that is supposedly a 2yrs journey to fix.

#12 Wombat140

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Posted 13 June 2012 - 10:15 AM

I found what looks like the thread you were talking about ( here ) and Dr. T says there that he's seen a lot of PANDAS cases that start as abdominal migraine symptoms. Now, I'm pretty sure that my OCD dropped from the sky not long at all after my migraines stopped. Coincidence? I really am going to look into PANDAS.

As for how I knew they were abdominal migraines, that was just what the doctor said when my Mum took me to see her about it. Apparently migraines in children most often do go to the stomach. (Consisted of feeling headachy and generally rotten for several hours, then being violently sick several times - the headache would disappear as soon as I was sick, for some reason.)

Funny you should say that about the gut recovering over months not days. My OCD and tics tend to vary by the month or week, rather than days - that's why I've never been able to identify any triggers.

I'm usually flummoxed by trying to read through the boards, too... tongue.gif


Born 1990. Always had slight Asperger's traits but got along fine. Severe OCD struck almost overnight in 2003. Varied randomly from month to month since then, almost gone once or twice, but never completely. Very bad indeed since spring 2012 and shows no signs of improving.

Symptoms: all sorts of things (written words, smells, things people say) mysteriously "will not do" and require a compulsion to be done before I can go on. No obsessions - in that way, and in physical nature, the rituals are almost like tics except that they're always a response to something particular. Extreme sensitivity to particular sounds, although that comes and goes over months.

Wondered if it might be PANDAS - in August 2012 I finally managed to locate a doctor who knows about it. Tried Azithromycin, co-amoxiclav (Augmentin) and tinidazole, but to no clear effect. No test results as yet - fluffed three attempts to get blood sample taken.

 

Have now been seeing homoeopath since summer 2013.  Results have been mixed, there have been definite improvements at times but they haven't lasted.  No luck at all for the last few months - in fact, since this month's remedy (Aug 2014) things are noticeably worse.





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