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Tourettes is not pandas!
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amother
OP  


 

Post Sat, Sep 07 2024, 9:44 pm
Please stop pushing pandas every time someone asks a question or looks for support for Tourette’s! Don’t you think I would rather my child be diagnosed with pandas? Don’t you think I tried every possible treatment and spent years and years treating for pandas before receiving the Tourette’s diagnosis? There is so much that can be done to help treat pandas. And most pandas cases go away after childhood. I watch my child suffer day after day from debilitating tics and try every possible avenue to help. And when I reach out to see if there is anyone out there dealing with this who can possibly give some ideas that we haven’t tried, all I hear is it’s probably pandas. IT IS NOT PANDAS! Tourette’s is real and it is horrible and it may or may not go away in adulthood. So if you have no advice except for pandas, please keep it to yourself!

End of rant Smile
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amother
Tealblue


 

Post Sat, Sep 07 2024, 9:47 pm
Omg omg yes , yes & yes
Scream it louder
I have child w/ Tourette’s & feel the same
I think in the real world, people know Tourette’s
This site just has a weird obsession with Panda’s
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amother
  OP  


 

Post Sat, Sep 07 2024, 9:50 pm
amother Tealblue wrote:
Omg omg yes , yes & yes
Scream it louder
I have child w/ Tourette’s & feel the same
I think in the real world, people know Tourette’s
This site just has a weird obsession with Panda’s


It actually wasn’t on this site which is why I’m so upset. On this site I know that everyone screams pandas. I asked somewhere else and got the response did you look into pandas? 90% of Tourette’s is really pandas and you can treat it easily. Uh yeh we looked into pandas do I look like a moron??
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amother
Firethorn  


 

Post Sat, Sep 07 2024, 9:51 pm
This forum has really great information and supprt for tourettes . There are a lot of things that can cause tics besides for pandas. That doctors won't tell you about.

https://latitudes.org/forums/f.....tics/
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amother
Burlywood


 

Post Sat, Sep 07 2024, 10:02 pm
Omg every word you wrote I could have written. We have gone down the pandas route for a number a years dor one of my kids and just recently got a diagnosis of tourettes. My heart breaks seeing my child being unable to control the tics. There is no cure and chances of it yes or not going away into adulthood. Wish there's a support group.
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amother
Dimgray


 

Post Sat, Sep 07 2024, 10:06 pm
Pandas is definitely NOT treated easily. Who sold you that myth? Its six years down the line for my kids...(and some are older teens already...so you have some misinformation about pandas in general)...
Unless you treated with monthly ivig already (gold standard pandas treatment and what is finally healing my kids), you didnt do everything.
Either way, both tourette's and pandas is a clinical diagnosis with a very very similar collection of symptoms.
Not sure why labels matter here for anyone talking to you...trying to find the cause and right treatment is the goal for either one.
These poor kids are suffering and the parents as well...
Wishing all continued healing.
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amother
Hydrangea


 

Post Sat, Sep 07 2024, 10:07 pm
amother OP wrote:
It actually wasn’t on this site which is why I’m so upset. On this site I know that everyone screams pandas. I asked somewhere else and got the response did you look into pandas? 90% of Tourette’s is really pandas and you can treat it easily. Uh yeh we looked into pandas do I look like a moron??
90% of Tourette’s or 90% of tics?
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amother
  OP  


 

Post Sat, Sep 07 2024, 10:14 pm
amother Dimgray wrote:
Pandas is definitely NOT treated easily. Who sold you that myth? Its six years down the line for my kids...(and some are older teens already...so you have some misinformation about pandas in general)...
Unless you treated with monthly ivig already (gold standard pandas treatment and what is finally healing my kids), you didnt do everything.
Either way, both tourette's and pandas is a clinical diagnosis with a very very similar collection of symptoms.
Not sure why labels matter here for anyone talking to you...trying to find the cause and right treatment is the goal for either one.
These poor kids are suffering and the parents as well...
Wishing all continued healing.


I know pandas isn’t so easy to treat, I tried for 5 years. This rant is about Tourette’s though. And labels do matter when you’re trying to find out more about helping your child and people keep pushing treatments for a different diagnosis which is not treated the same way.
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mha3484  




 
 
    
 

Post Sat, Sep 07 2024, 10:14 pm
Ive had tourettes since I was 7 and I suspect one of my kids does too. I agree with you 1000%.
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amother
  OP  


 

Post Sat, Sep 07 2024, 10:20 pm
mha3484 wrote:
Ive had tourettes since I was 7 and I suspect one of my kids does too. I agree with you 1000%.

Did it lessen into adulthood? I need chizzuk! Right now my child cannot function and I don’t see a future.
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amother
Pistachio


 

Post Sat, Sep 07 2024, 10:21 pm
Im just putting this out there that my child had tics from an ADHD medication he was taking. He could really use it but the tics were terrible.
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  mha3484




 
 
    
 

Post Sat, Sep 07 2024, 10:22 pm
Yes it did. Ive posted on here before. I can type a longer post when im not on my phone.
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amother
  OP  


 

Post Sat, Sep 07 2024, 10:25 pm
mha3484 wrote:
Yes it did. Ive posted on here before. I can type a longer post when im not on my phone.

I will search for it thank you!
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amother
Bisque


 

Post Sat, Sep 07 2024, 11:25 pm
It's SO hard to watch a child suffering with uncontrollable tics. I've been there.

Do you want to share what specifically you've tried and maybe others here can chime in with things that they've seen help?
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amother
Mimosa


 

Post Sat, Sep 07 2024, 11:28 pm
It’s not just Tourettes. It’s being pushed on people posting about other childhood issues too. It’s so frustrating and rude.
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amother
NeonPurple  


 

Post Sat, Sep 07 2024, 11:31 pm
Did you try homeopathy? I know resilience naturopathic works mostly with pandas but I'd ask them if they could treat tics that don't stem from pandas. I'd venture to say yes because they don't care the cause, they look at the symptoms and if the symptoms are tics they look at that and the other things going on and choose a remedy based on the symptoms, not the cause
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amother
  NeonPurple


 

Post Sat, Sep 07 2024, 11:32 pm
And Adding that while I did use them for pandas for a couple kids. 1 kid had no indication of any pandas and we used them and they helped
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amother
Brass  


 

Post Sun, Sep 08 2024, 12:37 am
I think the subject line is misleading.
It would be more accurate if the subject said:
Sometimes Tourettes is Tourettes!

Many times Tourettes is PANDAS.

My son was diagnosed with Tourettes by a few neurologists and it ended up being PANDAS. After having motor and vocal tics for over a year, he was treated for PANDAS and he's BH better.

On the Tourettes sites they like to say there is no cure.
However they should say to rule out PANDAS.

Hatzlacha!
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amother
Thistle


 

Post Sun, Sep 08 2024, 12:41 am
Someone I know took medication that helped for tourettes. I don't know what kind though.
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amother
  Brass


 

Post Sun, Sep 08 2024, 12:48 am
https://www.mayoclinic.org/dis.....50470

Those are the common meds.
I think most people start with clonidine.
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