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Lots of blinking - herxing?


adkmom

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Hi everyone,

 

ds4 has started blinking a lot the past 2 days, all day long. That is in addition to the grunting sound which has gotten louder those 2 days as well. Anyone experience this? Is this herxing or the meds not working? (Don't know if it's an additional tic caused by Pandas?)

 

thanks.

 

darlene

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Definitely a herx..... for some kids TICS take a very long time to resolve. They will trade, flair, revisit stuff you thought was gone, add new ones during a rotation of regimen/herx's. As awful as they are to watch, they are a great indication of a herx and it tells me the infection is still there. Our son was TIC free for several months until last antibiotic rotation. He slowly took on a coughing TIC (bartonella cough) when we added CeDax over 7 weeks ago. The cough has peeked and is now starting to fade... barely coughed yesterday, back today, etc. I only sight the example so you know how long herx's can last.

 

AND, when we initially started treating Lyme we revisited every TIC he had ever had and plus some new stuff and that too took 9 weeks for that to settle out as well. For others its been a little longer and close to six months for things to truly start fading.

 

IF YOU CAN try to view them as something is working. I promise they will fade throughout treatment and will eventually go away. When they do you'll know he's getting a lot lot better. We were predominately TICS at sudden on-set with minimal OCD. OCD resolved a very long time ago for us and maybe had three blips with OCD since last year. So, resolution of symptoms might depend on how they presented initially too.

 

 

-Wendy

Edited by SF Mom
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I can say we are seeing tics moving, changing some better some worse. Last week I actually saw almost total calmness. It was great while it lasted but of course I knew it wouldn't last. As a mother, wow, this ride is really terrifying at times. You doubt yourself alot. I keep telling myself, just hold the course.

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How do you hold when your ds throat is raw inside and out..(from screeching/screaming)

he stayed home from school yesterday, he felt he could not restain them at school all day, as he had done earlier all week..

stopped protocal wednesday evening to give him a break and see if we can stablize before proceding...he is on low dose vanco and clinda...and the cholestramine in eveing...

started with 1 drop of samento today....

( i don't want to abandon lymes..i don't want to loose time)

 

my ds8 has his friend over..the friend who's both siblings were going to be in swedo study but couldn't do to logistics...he says to ds11...why do keep screaming dude...mind you, this is even with him surpressing....

 

lismom..I AM SOOOOOOO GLAD YOU ARE SEEING LITTLE WINDOWS..oh so glad...i need to hear this....i so want, in a way, for the oat test we just did to tell me that his gut is fine and that SF is right :P ....but as i sit here and type with tears hitting the key board...i just want to put ds11 on steroids(i'm not, not for awhile(((as i do think there is some lyme product in him)), unless we can't get this to settle down in the next couple of wweeks).....it's so bad.....

 

and why did this other mom get a doc who sent her to swedo..the same exact time i started with my ds and have been poo-poohed the whole time....

I am so happy for all the great posts, it gives me hope...and i am jealous...and i am not a jealous person..of anything but healthy kids!!!

 

ps doc b in md started ds on zanex

Edited by Fixit
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Fixit, I wish I lived near you to come and give you hugs and help. I feel for you so much. Its one thing to see the motor tics, its completely different to live with the vocal. Your son has got to be so strong. I think about you daily. Remember though, you did see improvement at one time too! We have to keep that thought in the back of our minds, because it tells us that better days will come. We've seen it. Even if it was fleeting. Sometimes it seems with these tics, you almost have to start over with what helped and either pull back treatment or modify. Thats what I've had to do.

Edited by lismom
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thanks ladies...

i needed to go for a drive....

no the screeches are either disibosis of some sort or herx..that is what beals thinks too...

zanex is to try to reduce potential anxt...so as he goes to school and becomes more concerned about tics probablay, innevetiableily (sp) too tired, ..become worse..just trying to see if we can take edge off...some tiredness with it...seeing if i can figure out something for him...he LOVES school...this was the first time he has ever asked to not go..

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Thanks everyone. Now it does seem to be decreasing...so maybe this wave is over but....we'll prepare for the next. So strange, as he's blinking, grunting, he's also not in a very good mood (I guess who would be). it disappears and he's lovely dovey.

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