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Posted

Also posted in the PANDAS forum...

 

I have recently written our story. I am hoping others here can read it and watch the posted video of my daughter's eye tic. ANY input would be more appreciated than you can know.

 

http://heatherrayne....our-experience/

 

She was sick again this week (about 2 months after the 1st episode ended) and I have noticed a few "eye rolls" again today. I thought we were in the clear. I am so scared and nervous and worried for her.

 

Further info - she has no other symptoms. She does great in school and socially. She has always displayed some VERY minor neurotic behavior - such as list making and having to do things a certain way or she will get upset (but not to the point of tantrums or rages). She organizes things her certain way...stuff like that - nothing life altering. Other than that - pretty darn typical.

 

More info - We live in SE Wisconsin. I haven't really found too many Docs around here (been reading this and various sites for quite some time now). But someone I know has a son who was Dx by a pediatric neurologist in Milwaukee. So, at least I know there is a doc around who believes in PANDAS! I wrote a letter to our primary family doc (who I have had for 20 years now) and also printed a letter I found on here (written for medical professionals whom are unaware of PANDAS). I am sending that to her today.

 

That first episode, she got better very gradually after a 2nd round of antibiotics. I think having lost her ipod (she plays games on it) may have made a difference as well...not sure. But now my DH bought her a new one (grrrr).

 

This morning, I noticed nothing. And last night, only 3 individual eye rolls. I am REALLY hoping this won't turn into a full episode.

 

I did write to her teacher and explain everything and she said she would pay more attention and let me know when/if she notices. She said she has noticed in the past. I was not happy to hear that, obviously.

 

I did go ahead and order her the Kids Calm Multi which has the same magnesium in it as the Natural Calm (I called them to make sure). I actually take it myself for palpitations (PVCS/PACS). And regardless, her eating is so picky, she could certainly use the nutrients anyway.

 

I have a history of anxiety myself and when this started in October, I had a complete relapse. This has really overwhelmed me. And when I saw yesterday that it could be coming back...it broke my heart. My family thinks I am over reacting...that she will get over it.

 

 

Thank you for your time!!!

Posted

Hi,

It's kind of hard not to "overreact", no? Tics can cause a parent great concern. Usually when an "overreaction" happens, you do something to try and help things. And that's a good thing. Hopefully you can get to the dr. who has PANDAS experience and things will get worked out sooner rather than later. Good luck! Chris

Posted

I couldn't get the video to load on my computer. My son also rolls his eyes as a tic. I was hoping to see if your daughters is similar to my son eye rolling. It looks painful to me when it happens alot. It comes & goes. My son has had tics for about 7 years, both physical & vocal. As he has gotten older they have gotten less but just a few weeks ago started up again in full force.

 

I cut out all video games (he doesn't play for long periods of time as I don't allow that) but he does play some most everyday since the weather has been bad. We cut out the computer & video games & we could tell a huge difference in just two days. We went skating yesterday so we'll see how he did at school today (wondering if the bright flashing lights & noise will have an impact) He has also been sick with a virus so I am thinking that may have something to do with the tics getting worse, like your daughter.

 

Does your daughter have allergies? Just wondering, my son does (seasonal allergies & sinus trouble).

 

Good luck:)

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