New Here - seeking info re dd's onset of complex tic

[PacificMama]

Hello,

So happy to have found this board. I have also just purchased the tics and tourette's book by Sheila Rogers and started reading it.

 

Background: My 6 year old daughter contracted lyme disease when she was about 2.5 years old. She was not diagnosed until she was 3 years old, with a positive test. She then was on antibiotics for 2 years, and it was stopped when she had been symptom free for several months.

During her illness/treatment, she would suffer occasional bouts of OCD (no tics), which always disappeared with the introduction of antibiotics, or a change in her protocol. Her lyme doctor said OCD is not uncommon in lyme kids, and it would likely disappear for good when the lyme was eliminated.

 

Her antibiotics were discontinued in March 2007 when she was 5 -- we have not seen lyme symptoms or OCD since.

 

Currently: About 2 weeks ago she had a sudden (it seemed) onset of a complex tic manuever, what I believe is the St. Vitus Dance (putting her hands in bear claws, hunching over, and squatting down or doing a little jig. A couple of days after that she started uttering a simple phrase repetitively when she would do this movement. Otherwise, she seems perfectly fine and is in good spirits, sleeping well, etc.

 

While this came out of the blue, there may have been shades of this behavior beginning a few months ago when she started to "freeze" for a couple of seconds occasionally. We thought she was joking around.

 

Triggers?? PANDAS??

There are so many new things in her environment right now:

We moved across the country 6 weeks ago and are in a new house;

Water here has lots of chlorine and is flouride treated (new for us);

Lots of pool swimming;

She fell off her supplement regimen (multi, calcium/magnesium, and probiotic) but is now back on;

 

Right before this behavior started, we had our basement floor painted with oil based paint (much to my dismay). It is still noxious.

For those of you with chemical sensitivites, could they really cause this sort of complex tic in a child who otherwise has never had tics?

I would say that she might be chemically sensitive in that she can't tolerate certain chemicals on her skin (rash), and even is very sensitive to mosquito bites.

I othewise use all natural/non toxic cleaners and products for their bathing, etc.

 

Re PANDAS: It also occured to me that this might be some sort of PANDAS reaction from her lyme disease. I did a phone consult with Dr. K in Chicago who thought it might be possible she is PANDAS (from unknown strep). I had her ASO checked this week (fine), but have not yet been able to have a dnase test done.

Her lyme doctor thought it might be remnants of lyme, and is going to check her out but did start her back on antibiotics 4 days ago. We have seen no real improvement. So I'm not so sure about the lyme or PANDAS theory. (although she somewhat fits the behavioral profile in terms of occasional moodiness or being quick to snap.

 

 

HELP PLEASE: I am wracking my brain trying to consider what has triggered this. Mostly, I am wondering about your experience with a complex tic movement and vocal tic, and if that can happen because of an environmental trigger (I know it's a symptom of PANDAS).

 

THANK YOU!

[Chemar]

Hi and welcome

 

sorry to make a short post now but I did just want to welcome you and will try to post more tomorrow as have a family gathering right now.

 

I did want to just answer re the paint....absolutely yes this can trigger tics!

 

that, combined with all the other new things in her environment plus the chlorine, fluoride etc could all be playing a part

 

I have been researching multiple chemical sensitivity (MCS) and find a lot of correlation between it and microbial infections.....you already know about the lyme and strep/pandas....but also dont overlook candida albicans, aka "yeast" infection. Many people with MCS seem to have candida overgrowth as well

 

sorry to post and run but hope that gives some pointers for now

 

C

[PacificMama]

Hi and welcome

 

sorry to make a short post now but I did just want to welcome you and will try to post more tomorrow as have a family gathering right now.

 

I did want to just answer re the paint....absolutely yes this can trigger tics!

 

that, combined with all the other new things in her environment plus the chlorine, fluoride etc could all be playing a part

 

I have been researching multiple chemical sensitivity (MCS) and find a lot of correlation between it and microbial infections.....you already know about the lyme and strep/pandas....but also dont overlook candida albicans, aka "yeast" infection. Many people with MCS seem to have candida overgrowth as well

 

sorry to post and run but hope that gives some pointers for now

 

C

 

Thanks for your reply. My instinct tells me it is something environmental that is causing this (as opposed to lyme or PANDAS). But would a child who has never had tics before wake up one day and start exhibiting such a complex tic behavior (the dance, the repetitive phrasing)?

I will also look into the yeast possibility.

Anything else you have to offer would be greatly appreciated.

[CSP]

Welcome PM,

 

I do remember the fall my son started explosive ticcing, we had put new carpet in the basement. Had bug guy spray, son had 2 shots, and I do believe he started ticcing almost over night.

 

I'm wondering if my son's waxing now is part teeth, and during the same time he started waxing the county sprayed, so I'm wondering if that did not help.

 

I hope you find some answers, and read as much as you can here, maybe something will click.

 

God Bless,

CP

[Diana]

The PANDAS connection does not always show up with titers or dnase tests. Lyme disease/PANDAS are tremendous autoimmune responses by the child's body to some bacteria or other. If she behaved better with antibiotics - that would be the best route to continue for now. My son has pandas and it is better with daily doses of azithromycin. He also take 1/2 pill of Zyrtec (5mg) - to calm down any immune response to outside factors. My only experience is w/PANDAS. Dr. K is a great doctor.

 

 

Hello,

So happy to have found this board. I have also just purchased the tics and tourette's book by Sheila Rogers and started reading it.

 

Background: My 6 year old daughter contracted lyme disease when she was about 2.5 years old. She was not diagnosed until she was 3 years old, with a positive test. She then was on antibiotics for 2 years, and it was stopped when she had been symptom free for several months.

During her illness/treatment, she would suffer occasional bouts of OCD (no tics), which always disappeared with the introduction of antibiotics, or a change in her protocol. Her lyme doctor said OCD is not uncommon in lyme kids, and it would likely disappear for good when the lyme was eliminated.

 

Her antibiotics were discontinued in March 2007 when she was 5 -- we have not seen lyme symptoms or OCD since.

 

Currently: About 2 weeks ago she had a sudden (it seemed) onset of a complex tic manuever, what I believe is the St. Vitus Dance (putting her hands in bear claws, hunching over, and squatting down or doing a little jig. A couple of days after that she started uttering a simple phrase repetitively when she would do this movement. Otherwise, she seems perfectly fine and is in good spirits, sleeping well, etc.

 

While this came out of the blue, there may have been shades of this behavior beginning a few months ago when she started to "freeze" for a couple of seconds occasionally. We thought she was joking around.

 

Triggers?? PANDAS??

There are so many new things in her environment right now:

We moved across the country 6 weeks ago and are in a new house;

Water here has lots of chlorine and is flouride treated (new for us);

Lots of pool swimming;

She fell off her supplement regimen (multi, calcium/magnesium, and probiotic) but is now back on;

 

Right before this behavior started, we had our basement floor painted with oil based paint (much to my dismay). It is still noxious.

For those of you with chemical sensitivites, could they really cause this sort of complex tic in a child who otherwise has never had tics?

I would say that she might be chemically sensitive in that she can't tolerate certain chemicals on her skin (rash), and even is very sensitive to mosquito bites.

I othewise use all natural/non toxic cleaners and products for their bathing, etc.

 

Re PANDAS: It also occured to me that this might be some sort of PANDAS reaction from her lyme disease. I did a phone consult with Dr. K in Chicago who thought it might be possible she is PANDAS (from unknown strep). I had her ASO checked this week (fine), but have not yet been able to have a dnase test done.

Her lyme doctor thought it might be remnants of lyme, and is going to check her out but did start her back on antibiotics 4 days ago. We have seen no real improvement. So I'm not so sure about the lyme or PANDAS theory. (although she somewhat fits the behavioral profile in terms of occasional moodiness or being quick to snap.

 

 

HELP PLEASE: I am wracking my brain trying to consider what has triggered this. Mostly, I am wondering about your experience with a complex tic movement and vocal tic, and if that can happen because of an environmental trigger (I know it's a symptom of PANDAS).

 

THANK YOU!

[PacificMama]

The PANDAS connection does not always show up with titers or dnase tests. Lyme disease/PANDAS are tremendous autoimmune responses by the child's body to some bacteria or other. If she behaved better with antibiotics - that would be the best route to continue for now. My son has pandas and it is better with daily doses of azithromycin. He also take 1/2 pill of Zyrtec (5mg) - to calm down any immune response to outside factors. My only experience is w/PANDAS. Dr. K is a great doctor.

 

Thanks for the additional replies.

 

Diana (or other PANDAS parents): How long until one should see some improvements on the antibiotics? She has been on zithro and omnicef for 8 or 9 days, but I honestly don't see any difference yet.

 

Thanks.