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Pandas tell me everything

 
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amother




OP
 

Post Mon, Apr 26 2021, 7:31 pm
I was just reading the other thread (about child therapist which really went off into a Pandas direction) and starting to worry. Can you please give a pandas for dummies discourse? Sounds like there are a lot of knowledgeable moms here. Also does it ever present with lots of weird and unexplained skin rashes? And tantruming?
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amother




Apricot
 

Post Mon, Apr 26 2021, 7:47 pm
Step one: See something strange, different, confusing in your child

Step two: decide your child has Pandas

Step three: find a doctor who focuses on Pandas

Step four: tell everyone your child has Pandas

Welcome to the club! Now you've become a member of the Pandas club, congrats!

Pandas is extremely rare; except here

https://en.m.wikipedia.org/wiki/PANDAS
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amother




Cyan
 

Post Mon, Apr 26 2021, 8:22 pm
I’m sorry you felt the need to post that apricot. As rare as you think it is, unless you have a child who has it you can’t understand what a parent or child is going through, and having people say things such as what you wrote is hurtful and misleading. Parents need more awareness of this disease and then possibly these children don’t haveto suffer for years and years . Please think before you speak.

To the OP, strep isn’t always the underlying cause, but maybe if you have strange rashes and other things you need to check for Lyme possibly .

There are many symptoms pandas can present as, I can’t type now but I’ll try soon when I have few mi .
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amother




Wheat
 

Post Mon, Apr 26 2021, 9:05 pm
Pandas isn’t rare at all, experts estimate 1/200 kids have it, and the incidence is likely much much higher because it goes undiagnosed so often. Also, even if you’re a doubter, when you start treating and see the improvements in front of your eyes, it’s really really hard to keep doubting.

Also, pandas isn’t a new disorder. The relationship between strep infections and neuropsychological symptoms dates back to the 1800’s, it was called Sydenham chorea back then, the main symptoms are chorea (jerky movements in the extremities) but it Was known back then that it comes along with tics, ocd, behavioral changes, mood changes and so on. S.C. was also linked to rheumatic fever, both of them are autoimmune sequelae to strep infections. The reason pandas was coined and considered a new diagnosis is because it’s a minor, incomplete form of Sydenham chorea, without some of the core features and minus the heart involvement. But when you look up the symptoms for S.C., they are almost identical to pandas.

I’m one of those posters who is always posting telling people to check for pandas. OP what would you like to know? Like the pp, I agree rashes can come from Lyme or coinfections, but there are other bacterial or viral infections that can cause neuropsych symptoms and rashes, including strep. Yes to tantrums, it was one of our first red flags.
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amother




Cyan
 

Post Mon, Apr 26 2021, 9:27 pm
I can tell you some red flags that I have seen in my children . (Yea children, I have more than one with it) and no child is the same
Sudden or severe separation anxiety
Food aversion
Fear of chocking, throwing up stopped eating out of fear
Night terrors restless sleep , waking at night
Frequent urination of bed wetting
Ocd which isn’t always clear ocd sometimes it’s in mind thoughts such as the fear of choking
Anxiety
Tics such as clearing throat, weird sounds but there can be many kinds of tics
Sensory issues such as can’t handle loud noise, music, certain people, bath,
Rages to the point where sometimes we had to hold child down, throwing things turning house upside down bec one small thing ticked him off
Screaming
Angry mood changes
Not going to school out of fear
ADHD
ODD
Depression
Hand writing changes and declines
Cognitive decline

I’m sure There are more... but for now these came to mind
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amother




Bisque
 

Post Mon, Apr 26 2021, 10:40 pm
amother [ Apricot ] wrote:
Step one: See something strange, different, confusing in your child

Step two: decide your child has Pandas

Step three: find a doctor who focuses on Pandas

Step four: tell everyone your child has Pandas

Welcome to the club! Now you've become a member of the Pandas club, congrats!

Pandas is extremely rare; except here

https://en.m.wikipedia.org/wiki/PANDAS

Thank you for your input, amother who obviously never had a child with PANDAS. It feels great to have someone say you are making up your child's condition when he is suffering so terribly.

OP, when a child gets PANDAS, he goes from being normal (or as normal as a typical child is) to being completely not. Whatever used to be right about him suddenly goes crazy.

In my case, my child who used to eat a ton without limits suddenly put himself on a starvation diet, started using the bathroom every 5 minutes, thinking he was having accidents, being afraid to leave the house because he needed to be near the bathroom, and crying on the floor when he thought he has run out of clean underwear because of his imaginary accidents.

But no, amother apricot, there was nothing wrong with him, and it was just a coincidence that he got all better after we started him on antibiotics. Thanks for letting me know.
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amother




Wheat
 

Post Mon, Apr 26 2021, 10:51 pm
amother [ Bisque ] wrote:
Thank you for your input, amother who obviously never had a child with PANDAS. It feels great to have someone say you are making up your child's condition when he is suffering so terribly.

OP, when a child gets PANDAS, he goes from being normal (or as normal as a typical child is) to being completely not. Whatever used to be right about him suddenly goes crazy.

In my case, my child who used to eat a ton without limits suddenly put himself on a starvation diet, started using the bathroom every 5 minutes, thinking he was having accidents, being afraid to leave the house because he needed to be near the bathroom, and crying on the floor when he thought he has run out of clean underwear because of his imaginary accidents.

But no, amother apricot, there was nothing wrong with him, and it was just a coincidence that he got all better after we started him on antibiotics. Thanks for letting me know.
Agree with almost everything here but because this is an informative thread I am going to say that many kids don’t have sudden onset, but they can still have pandas. Either their onset was so early on in life that it was impossible to establish a true baseline, or they had a slow onset over a few months or years. Research coming out of Stanford’s pans and pandas clinic is showing that kids without sudden onset respond to treatment as well as kids who had sudden onset.
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amother




Aquamarine
 

Post Mon, Apr 26 2021, 11:02 pm
I have a question:
If a kid only has tics can it be pandas? for example- clearing throat, or blowing (btw is that a tic? has anyone experienced their kid doing that, like a soft blow with their mouth every so often)?
But doesn't seem to have any other thing wrong with them. What else can it be? or can it be pandas?
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amother




Wheat
 

Post Mon, Apr 26 2021, 11:10 pm
amother [ Aquamarine ] wrote:
I have a question:
If a kid only has tics can it be pandas? for example- clearing throat, or blowing (btw is that a tic? has anyone experienced their kid doing that, like a soft blow with their mouth every so often)?
But doesn't seem to have any other thing wrong with them. What else can it be? or can it be pandas?
I know a few kids who had a slow onset that started out with just tics for a long while and then slowly more symptoms crept in until it looked more like classic pandas. It’s also possible that there are other symptoms there but you’re not picking up on them either because it’s your child’s baseline and you’re used to it, or because it’s not being recognized for what it is. Throat clearing can also be allergies and other stuff, but the blowing thing would be harder to explain away. Lastly, tics almost always indicate an imbalance in glutamate or dopamine, so even if it’s not strictly pandas, meaning the imbalances are being caused by brain inflammation that is a result of a strep infection, there would still be other biological, medical, potentially treatable root causes for the tics. You can trial an anti histamine to see if it’s allergies, and an ibuprophen trial can tell you if it’s inflammation driven behavior.
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