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-> Children's Health
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aricelli
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 Thu, Feb 14 2019, 8:20 pm
Amother khaki- hey - I dont knock your pandas diagnosis and you dont knock my spd diagnosis! The therapies are helping so whats the difference what its called. And people like Lucy Jane Miller dont feel like its just a stab in the dark and are trying to get it into the dsm as a stand alone diagnosis- so! And there are autism mutations as well.
This conversation is neither here nor there! Good night and Good luck!
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aricelli
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Thu, Feb 14 2019, 8:28 pm
Just btw- you realize youre doing to me what others are doing to you?
Lets give each person space to treat their difficulties as best they can.
Wishing you good night
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amother
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Thu, Feb 14 2019, 8:30 pm
| aricelli wrote: | Just btw- you realize youre doing to me what others are doing to you?
Lets give each person space to treat their difficulties as best they can.
Wishing you good night | Oops, sorry you found that offensive. You're absolutely right.
(OP's original diagnosis wasn't working for her anymore, so maybe it will be helpful for her)
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aricelli
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Thu, Feb 14 2019, 8:32 pm
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Youre my kind of gal khaki!
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aricelli
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Thu, Feb 14 2019, 8:34 pm
Believe me, like I said earlier I dont laugh at anything anymore... life has taught me that “you never know”
Even ufo’s
No
I think we did this so long that I’m seeing things
Was fun and informative and interesting
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amother
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Fri, Feb 15 2019, 10:28 am
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The diagnosis is controversial because neuropsychiatric disorders are complex. Very often there are multiple factors involved and we may never know all the triggers or why one child is more susceptible than the other. There's also a lot of black-and-white thinking. Either you accept the PANDAS diagnosis or you're promoting putting kids on lifelong psychiatric meds. There's a lot of middle ground. Just because you don't believe long-term antibiotics (or IVIG) are the right treatment for tics or ADHD doesn't mean you believe that Adderall is always the solution either. First step should always be a complete educational and psychological evaluation and looking into therapy, counseling, and educational modification. Once you've gone that route and it's not effective you can start looking deeper. Sudden onset and a relapsing/remitting course are common for many neuropsychiatric disorders so in and of itself it's not proof that the PANDAS diagnosis is correct.
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amother
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Fri, Feb 15 2019, 1:04 pm
| amother wrote: | | The diagnosis is controversial because neuropsychiatric disorders are complex. Very often there are multiple factors involved and we may never know all the triggers or why one child is more susceptible than the other. There's also a lot of black-and-white thinking. Either you accept the PANDAS diagnosis or you're promoting putting kids on lifelong psychiatric meds. There's a lot of middle ground. Just because you don't believe long-term antibiotics (or IVIG) are the right treatment for tics or ADHD doesn't mean you believe that Adderall is always the solution either. First step should always be a complete educational and psychological evaluation and looking into therapy, counseling, and educational modification. Once you've gone that route and it's not effective you can start looking deeper. Sudden onset and a relapsing/remitting course are common for many neuropsychiatric disorders so in and of itself it's not proof that the PANDAS diagnosis is correct. |
Why are you connecting ADHD to PANDAS?
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amother
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Sat, Feb 16 2019, 7:25 pm
| amother wrote: | | The diagnosis is controversial because neuropsychiatric disorders are complex. Very often there are multiple factors involved and we may never know all the triggers or why one child is more susceptible than the other. There's also a lot of black-and-white thinking. Either you accept the PANDAS diagnosis or you're promoting putting kids on lifelong psychiatric meds. There's a lot of middle ground. Just because you don't believe long-term antibiotics (or IVIG) are the right treatment for tics or ADHD doesn't mean you believe that Adderall is always the solution either. First step should always be a complete educational and psychological evaluation and looking into therapy, counseling, and educational modification. Once you've gone that route and it's not effective you can start looking deeper. Sudden onset and a relapsing/remitting course are common for many neuropsychiatric disorders so in and of itself it's not proof that the PANDAS diagnosis is correct. |
Here's the problem with doing your recommended educational and psychological evaluation, therapy, counseling and educational modification while a child's brain is on fire from PANDAS.....time. Most often, the child suddenly becomes completely dysfunctional. So you have a dysfunctional child, who really can't participate in or benefit from all of your fancy interventions. Meanwhile he has severe brain inflammation that isn't being treated, so long term damage can occur. And most likely the professionals you drag your kid to will have no idea what they are looking at or know how to intervene or help (because they don't "BELIEVE" in PANDAS) all while taking your money....
And their brilliant interventions won't work or will make things ten times worse or dangerous and put the whole family at risk.
BTDT.
A PANDAS child is a very, very, very ill child. E needs appropriate treatment, and fast. If you've never experienced it yourself, or you haven't seen it, you have no idea what you're talking about and should probably not promote bad advice
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aricelli
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Sat, Feb 16 2019, 8:23 pm
Amother orchid: gotcha.
Would you ever say that a parent should suspect trauma though if their child suddenly becomes dysfunctional?
Last edited by aricelli on Sat, Feb 16 2019, 8:31 pm; edited 1 time in total
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amother
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Sat, Feb 16 2019, 8:24 pm
| amother wrote: | Here's the problem with doing your recommended educational and psychological evaluation, therapy, counseling and educational modification while a child's brain is on fire from PANDAS.....time. Most often, the child suddenly becomes completely dysfunctional. So you have a dysfunctional child, who really can't participate in or benefit from all of your fancy interventions. Meanwhile he has severe brain inflammation that isn't being treated, so long term damage can occur. And most likely the professionals you drag your kid to will have no idea what they are looking at or know how to intervene or help (because they don't "BELIEVE" in PANDAS) all while taking your money....
And their brilliant interventions won't work or will make things ten times worse or dangerous and put the whole family at risk.
BTDT.
A PANDAS child is a very, very, very ill child. E needs appropriate treatment, and fast. If you've never experienced it yourself, or you haven't seen it, you have no idea what you're talking about and should probably not promote bad advice | Great explanation. Totally agree.
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amother
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Sat, Feb 16 2019, 9:19 pm
| aricelli wrote: | Amother orchid: gotcha.
Would you ever say that a parent should suspect trauma though if their child suddenly becomes dysfunctional? |
The suspicion of trauma needs to be ruled out, and it's part of the evaluation the PANDAS doctors do, in my experience. A PANDAS child can look like a terribly traumatized child, the behaviors are that extreme. So it does need to be ruled out.
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aricelli
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Sat, Feb 16 2019, 9:25 pm
Amother orchid!
Wow thats awesome that they look out for that as well - I wasnt aware.
Just thinking about my younger self turning into a dysfunctional little human at one point... trauma- not pandas. So I’m happy for this.
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amother
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Sat, Feb 16 2019, 10:10 pm
| aricelli wrote: | Amother orchid!
Wow thats awesome that they look out for that as well - I wasnt aware.
Just thinking about my younger self turning into a dysfunctional little human at one point... trauma- not pandas. So I’m happy for this. |
They ask about inappropriate touch, bullying, known traumas, etc. They also ask the child in an age appropriate way
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aricelli
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Sat, Feb 16 2019, 10:26 pm
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Wish you’d have written that earlier... Clears up a lot for me. Thanks
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aricelli
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Sat, Feb 16 2019, 10:27 pm
Not that I’d have said the truth if asked though
Even in an age appropriate way
I’m glad its being addressed though
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amother
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Sat, Feb 16 2019, 11:26 pm
| amother wrote: | Here's the problem with doing your recommended educational and psychological evaluation, therapy, counseling and educational modification while a child's brain is on fire from PANDAS.....time. Most often, the child suddenly becomes completely dysfunctional. So you have a dysfunctional child, who really can't participate in or benefit from all of your fancy interventions. Meanwhile he has severe brain inflammation that isn't being treated, so long term damage can occur. And most likely the professionals you drag your kid to will have no idea what they are looking at or know how to intervene or help (because they don't "BELIEVE" in PANDAS) all while taking your money....
And their brilliant interventions won't work or will make things ten times worse or dangerous and put the whole family at risk.
BTDT.
A PANDAS child is a very, very, very ill child. E needs appropriate treatment, and fast. If you've never experienced it yourself, or you haven't seen it, you have no idea what you're talking about and should probably not promote bad advice |
Is an MRI or other test done that shows there is brain inflammation?
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amother
Mauve
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Thu, Aug 01 2019, 8:33 pm
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It’s still and ongoing study. People can’t know exactly if it’s pandas or severe behaviors issue
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amother
Powderblue
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Fri, Aug 02 2019, 12:13 am
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I work in the mental health field with children and see many cases of children with tics and strange behaviors that are finally getting help from a mental health practitioner after months of being treated for pandas with antibiotics and then Iv therapy. And every month these tics become stronger and harder to cure! Even if you do want to treat for pAndas I don’t understand why drs aren’t sending these kids at the same time for therapy first and then if necessary psych meds
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amother
Sapphire
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Fri, Aug 02 2019, 12:19 am
| aricelli wrote: | Believe me, like I said earlier I dont laugh at anything anymore... life has taught me that “you never know”
Even ufo’s
No
I think we did this so long that I’m seeing things
Was fun and informative and interesting |
But didn’t you post in the past that you were avoiding getting a diagnosis for your ds?
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aricelli
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Fri, Aug 02 2019, 12:43 am
| amother [ Sapphire ] wrote: | | But didn’t you post in the past that you were avoiding getting a diagnosis for your ds? |
Youre cruel
It is really not nice to quote my past posts- especially when you dont understand
For the record: I dont avoid things
I may still take him.
I am working backwards because of my particular circumstances
And its working for me
You can pm me if you want exact details- no prob
Oh- but youre amother arent you?!
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