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Forum
-> Children's Health
Do you have at least one child who had or has PANS or PANDAS?
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| Yes and they were diagnosed by a doctor |
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22% |
[ 50 ] |
| Yes and they were diagnosed by a non-doctor professional |
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0% |
[ 2 ] |
| Yes and they were diagnosed by a non-professional |
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0% |
[ 0 ] |
| I suspect yes (or am in the process of getting a diagnosis) |
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8% |
[ 20 ] |
| No, not one of my children at any point |
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67% |
[ 152 ] |
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| Total Votes : 224 |
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amother
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 Mon, Jan 08 2024, 4:19 pm
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I see plenty of posts by people who have children with PANS/PANDAS and I would like to know how common it really is. It could be a few posters posting many times or many posters posting not as many times. The question is if you personally had one or more children who at any point had PANS or PANDAS. Please vote even if the answer is no otherwise the poll will be skewed.
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amother
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Mon, Jan 08 2024, 4:22 pm
Were 4 months into treatment at this point and let me tell you… it’s horrific
No one should have to deal with a child with PANDAS
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amother
Tiffanyblue
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Mon, Jan 08 2024, 4:28 pm
| amother OP wrote: |  I am so sorry! I hope this thread isn't insensitive to those suffering... If it is please tell me and I can edit or delete. |
I think it’s a good poll why can’t we know the numbers?
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amother
Sienna
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Mon, Jan 08 2024, 4:41 pm
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amother
Phlox
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Mon, Jan 08 2024, 4:54 pm
I had a kid who was "diagnosed" with PANDAS. I was skeptical but so desperate that honestly I was willing to believe anything if it could help him go back to "normal." They took out his tonsils and said that should help. It didn't. They wanted to put him on antibiotics for a long time...and it just felt so wrong for me, since the "diagnosis" was really just a questionaire and it's obviously so controversial...so I told dh that's it, we're just going to parent him as best as we can for a little while and see what happens.
It passed eventually. I'm sure if we'd been "treating him for PANDAS" when it passed, we'd say that our child had PANDAS and was successfully treated. But he finally got back to normal (I think it had been a year or so of craziness?) with no intervention on our part, other than the tonsilectomy that was a loooong time before he was magically "cured."
He was at the point that dh and I were constantly covered in scratches. He's now a teenager and one of the most well-behaved, socially normal kids you've ever met. He actually talked about that time recently, on his own, and said "I just remember I was angry all the time...it's so weird, I have no idea why I did all of those things." He felt badly about what he remembered and wanted to ask my forgiveness...
My skepticism about PANDAS has only gotten stronger. Sure, it's something. But how many kids who are "cured" of pandas would be "cured" in the same amount of time if they did nothing? I don't know...
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seeker
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Mon, Jan 08 2024, 5:08 pm
Not sure how to vote because I have a "kinda maybe idk?" One of my kids was found to have strep in her throat a few times in a short time span with no classic symptoms - we tested because sibling had classic strep, and she was behaving pretty cuckoo. At one point we tried zithromax because it's supposed to help knock this out, but she had a bad reaction to it so we stopped and just kind of didn't get around to doing anything else. The recurring infections and accompanying spells of mood/behavior/tantrums stopped.
No idea whether that was pandas or just a kid acting cuckoo while sick. Or a phase of life because she was around 3 at the time and 3 year olds can be cuckoo in their own right and she continues to be my most intense child.
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bsy
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Mon, Jan 08 2024, 5:26 pm
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I'm thinking about pandas with my child. We've had a few episodes with behavior being completely out of control around the time child has strep. And then recurrent strep a few weeks later, with crazy behavior the whole month....
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amother
Bergamot
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Mon, Jan 08 2024, 5:36 pm
| bsy wrote: | | I'm thinking about pandas with my child. We've had a few episodes with behavior being completely out of control around the time child has strep. And then recurrent strep a few weeks later, with crazy behavior the whole month.... |
Yes. Get blood work ASAP! This happened to my child
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bsy
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Mon, Jan 08 2024, 5:49 pm
We're treating the 2nd round of strep with strong antibiotics for 2 weeks (and I did Motrin for 5 days). Last time, behavior eventually went back to normal
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amother
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Mon, Jan 08 2024, 5:57 pm
I voted yes by dr. And it's something I don't wish on anyone.
But the reason I came on here is to say that I ordered the turmeric vitamin from Amazon based on the rec of amother on a Pandas thread and bchasdei Hashem I have seen significant improvement once she has been taking it. (This is along with long term zithro)
So if I can just continue the chesed and help even one more here is the link
https://www.amazon.com/Flaming.....ss_tl
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amother
Forsythia
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Mon, Jan 08 2024, 7:30 pm
2:
Took a yr to get diagnosis with first by then the child was suffering from other related medical issues caused from pandas and was morbidly ill. Bh we have a happy young adult with no tell tale signs (just parental and sibling trauma). We do need to stay vigilant and treat and minor symptoms which is every time someone else is ill
Second caught early and found a local doctor who agreed to treat and followed the rest of protocol we already knew
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bsy
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Mon, Jan 08 2024, 7:49 pm
| amother Wine wrote: | I voted yes by dr. And it's something I don't wish on anyone.
But the reason I came on here is to say that I ordered the turmeric vitamin from Amazon based on the rec of amother on a Pandas thread and bchasdei Hashem I have seen significant improvement once she has been taking it. (This is along with long term zithro)
So if I can just continue the chesed and help even one more here is the link
https://www.amazon.com/Flaming.....ss_tl |
How does anyone get kids to take liquid zithromax? My kid gagged on it and refused. Said it was awful.
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amother
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Mon, Jan 08 2024, 7:53 pm
| bsy wrote: | | How does anyone get kids to take liquid zithromax? My kid gagged on it and refused. Said it was awful. |
I’m the Zithromycin didn’t even work for us, but my child’s case is very severe. We were switched to cefdinir which definitely seems to be the path to recovery for now
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amother
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Mon, Jan 08 2024, 8:37 pm
| amother Phlox wrote: | I had a kid who was "diagnosed" with PANDAS. I was skeptical but so desperate that honestly I was willing to believe anything if it could help him go back to "normal." They took out his tonsils and said that should help. It didn't. They wanted to put him on antibiotics for a long time...and it just felt so wrong for me, since the "diagnosis" was really just a questionaire and it's obviously so controversial...so I told dh that's it, we're just going to parent him as best as we can for a little while and see what happens.
It passed eventually. I'm sure if we'd been "treating him for PANDAS" when it passed, we'd say that our child had PANDAS and was successfully treated. But he finally got back to normal (I think it had been a year or so of craziness?) with no intervention on our part, other than the tonsilectomy that was a loooong time before he was magically "cured."
He was at the point that dh and I were constantly covered in scratches. He's now a teenager and one of the most well-behaved, socially normal kids you've ever met. He actually talked about that time recently, on his own, and said "I just remember I was angry all the time...it's so weird, I have no idea why I did all of those things." He felt badly about what he remembered and wanted to ask my forgiveness...
My skepticism about PANDAS has only gotten stronger. Sure, it's something. But how many kids who are "cured" of pandas would be "cured" in the same amount of time if they did nothing? I don't know... |
Bh for you and your child that this was your experience. HOWEVER it is very invalidating to those of us who have dealt with more. My child was completely not functional, unable to sit in class, running around the house throwing clothes off, could no longer write a legible word, melting down out of control all over the place..... His OT assessment showed a drastic decline from a year earlier. We saw an immediate and direct response to antibiotics although we did have to switch to a different one later for greater effectiveness. Every flare we caught sooner subsided sooner with antibiotics. We went through this for 5 years! There is no way this could have just been addressed with parenting as well as we were able. We did, we tried, therapy too. His brain was on fire and there was no one home to talk to. He couldn't process it! There is no way any of us would have survived and he would be functional today had we not addressed it when and how we did. I'm immensely grateful to be holding my breath and afraid to say that maybe we are now on the other side. BUT idk if I will ever forget wondering where my child went and who the dysfunctional raging lunatic who took his place is.
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amother
NeonGreen
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Mon, Jan 08 2024, 11:46 pm
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I voted the wrong thing by mistake. How do I correct my vote
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amother
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Tue, Jan 09 2024, 1:43 am
| amother Phlox wrote: | I had a kid who was "diagnosed" with PANDAS. I was skeptical but so desperate that honestly I was willing to believe anything if it could help him go back to "normal." They took out his tonsils and said that should help. It didn't. They wanted to put him on antibiotics for a long time...and it just felt so wrong for me, since the "diagnosis" was really just a questionaire and it's obviously so controversial...so I told dh that's it, we're just going to parent him as best as we can for a little while and see what happens.
It passed eventually. I'm sure if we'd been "treating him for PANDAS" when it passed, we'd say that our child had PANDAS and was successfully treated. But he finally got back to normal (I think it had been a year or so of craziness?) with no intervention on our part, other than the tonsilectomy that was a loooong time before he was magically "cured."
He was at the point that dh and I were constantly covered in scratches. He's now a teenager and one of the most well-behaved, socially normal kids you've ever met. He actually talked about that time recently, on his own, and said "I just remember I was angry all the time...it's so weird, I have no idea why I did all of those things." He felt badly about what he remembered and wanted to ask my forgiveness...
My skepticism about PANDAS has only gotten stronger. Sure, it's something. But how many kids who are "cured" of pandas would be "cured" in the same amount of time if they did nothing? I don't know... | The tonsillectomy may have been a big part of why he recovered.
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amother
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Tue, Jan 09 2024, 1:46 am
| seeker wrote: | Not sure how to vote because I have a "kinda maybe idk?" One of my kids was found to have strep in her throat a few times in a short time span with no classic symptoms - we tested because sibling had classic strep, and she was behaving pretty cuckoo. At one point we tried zithromax because it's supposed to help knock this out, but she had a bad reaction to it so we stopped and just kind of didn't get around to doing anything else. The recurring infections and accompanying spells of mood/behavior/tantrums stopped.
No idea whether that was pandas or just a kid acting cuckoo while sick. Or a phase of life because she was around 3 at the time and 3 year olds can be cuckoo in their own right and she continues to be my most intense child. | Intense is often a sign of anxiety and a "noisy brain" which is usually a product of brain inflammation.
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