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-> Children's Health
amother
Catmint
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Today at 7:40 am
PANDAS is definitely real and like certain other things is both under diagnosed and over diagnosed. It's not the easiest thing to definitively diagnose and there's a long history of doctors being condescending and dismissive to concerned mothers. As someone who has a (totally different) chronic illness that is difficult to definitively diagnose and who was also dismissed and gaslit by doctors for years, when you finally figure out and get answers and start to see results, it's common to have this instinct to shout it from the rooftops: if you don't know what's wrong, it's probably THIS! LOOK INTO IT! You start to see undiagnosed cases EVERYWHERE. So yes, PANDAS is in that category. The parents get almost...evangelical about it. And I get how that's a turnoff for many. But I also understand why they come off like that.
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amother
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Today at 7:41 am
amother Lemonlime wrote: | I have a unique hypothesis about pandas. I do believe in it, (having gone through this with one dd) BUT from anecdotal evidence I have a slightly different take in treating it.
The vast majority of people (although not everyone) who I've spoken to about their pandas kids have mentioned that DC always had a tendency towards disregulation. E.g. the kid who cries easily, tantrums a bit, can be quite stubborn, etc. But pandas manifested as extreme, irrational, uncontrollable meltdowns.
My hypothesis is that many children may react to strep with brain inflammation, but that neuro-typical kids regulate through it with no symptoms, whereas children who have underdeveloped nervous systems don't regulate through it and it impacts them strongly.
To explain a bit more clearly - a baby cannot regulate through a tummy ache - he will scream and scream. A 2yo who had too much sugar will often be out of control. An overtired 4yo will meltdown. A sick child can be excessively whiny and needy . A mature nervous system regulates through these things. Even if you don't feel good, are hungry, tired or had a spike in blood sugar you can stay calm and regulated.
So I believe it's possible that often (although maybe not all) children with regulation issues REACT to brain inflammation, and if their regulation would be addressed the pandas would be irrelevant.
With my own dd we used antibiotics and motrin and it definitely helped. BUT with every cold there was regression and I was losing it. When we started floortime therapy to improve regulation the symptoms just slowly disappeared. |
My kid was extremely well adjusted before pandas hit. Not a dysregulated kid at all.
And if pandas seems to hit kids with prior nervous system dysregulation, yeah, that makes sense. They probably already had messed up guts and leaky blood brain barriers and high toxic and pathogenic loads which set the terrain for that perfect Storm that tipped them over into full blown autoimmunity
As for many kids getting brain inflammation from strep -- autoimmunity is never a normal immune response.
But regulating through brain inflammation just isn't a thing.
Did you ever read brain on fire by susannah cahalan? She was a perfectly normal, regulated, mentally healthy *adult* when she got sick with AE.
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amother
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Today at 7:50 am
Pandas *is* a reaction to strep.
What are you trying to say?
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amother
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Today at 7:54 am
amother Waterlily wrote: | Of course it’s real. And it’s not as prevalent as people on here say it is, and it’s not the answer to every childhood behavior issue. That part is fake. Real pandas is a short term issue treated by an antibiotic protocol. |
Yet it's 3 years later and we still see the effects of that one bout of strep that sent my child downhill.
My child was perfect. Incredibly smart, incredibly emotionally aware and advanced. No issues with dysregulation.
This child went on to:
Bedwetting
Refuse to go to the bathroom alone
Screaming at the air "get away from me"
Throwing boxes of toys at the baby
Wail and cling at the door when my husband left
Physically destroying property
3 years after treatment this child still flies into uncontrollable rages and has epic meltdowns.
I have another child with asd and adhd. I have another child who's just plain difficult. Pandas is incomparable as you watch your child become insane.
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amother
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Today at 8:00 am
The people who think it's overdiagnosed don't realize that there are mountains of medical research coming out every day that ALL mental illnesses from garden variety anxiety to ASD to schizophrenia and eating disorders are very, very heavily linked to inflammation. Pandas is just a subset. People use the tern because it's familiar. It would probably be more accurate to call it AE.
Happy to link a sampling of the research for anyone interested.
Parents aren't in denial that their child has anxiety or ocd or whatever. Parents don't want to accept that the anxiety and ocd "just is" or "it's genetic" and that psych meds with high risk profiles are the only answer. With good reason. Science is on their side, even if practice hasn't fully caught up yet.
The movement isn't a cult that doesn't want to admit their children have issues. The opposite. They are on the cutting edge because they want better for their children. They want cures. They want targeted treatment. They want safer treatment.
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amother
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Today at 9:04 am
Pandas is an autoimmune reaction to strep. It's not a reaction to the strep virus itself, IOW I don't feel well and act out when I have strep. A reaction to the strep virus will go away as soon as the bacteria goes away - 24 hours after starting antibiotics. Pandas is much more complicated and doesn't go away in 24 hours.
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amother
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Today at 9:12 am
amother Tiffanyblue wrote: | Pandas is an autoimmune reaction to strep. It's not a reaction to the strep virus itself, IOW I don't feel well and act out when I have strep. A reaction to the strep virus will go away as soon as the bacteria goes away - 24 hours after starting antibiotics. Pandas is much more complicated and doesn't go away in 24 hours. |
(Strep is a bacteria, not a virus)
So you think the acting out is just because the kid is sick? Like a toddler being extra tantrummy because they can't articulate that their throat hurts? Or something else?
I don't know. Past toddlerhood, I don't think acting out is a normal response to illness. I think acting in is much more typical. Getting quiet, withdrawn, tired, low energy, complacent, passive.
Even if acting out was a typical response, I'm not sure I can call aggression [in school, to the extent you get calls from teachers] meltdowns, yelling I want to die and get away and otherwise acting completely irrarional and unreasonable simply acting out.
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mommyla
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Today at 9:30 am
amother Milk wrote: | Monday afternoon: child comes home from school and spends the rest of the afternoon in a rage, screaming at everyone. Yells “get away from me! I don’t know what’s wrong with me!”
Monday night: child can’t fall asleep, having panic attacks and saying “I feel like I just have to die”.
Tuesday morning- Child wakes up still with no physical symptoms and goes to school.
Tuesday afternoon: I get a text from the child’s teacher saying he is being uncharacteristically aggressive in class. Child gets off the bus with 102 fever.
Wednesday morning: Child wakes up with sore throat, puss on tonsils. Positive strep test.
Rinse and repeat about 8 times and maybe you’ll start to see a pattern, like I did.
P.S. too many people cry “pandas” without enough evidence. In my child’s case the behavior is linked very clearly with strep. |
Why don’t you get his tonsils removed?
Some of my kids also have only behavioral symptoms when they have strep but they don’t get it as frequently as yours.
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amother
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Today at 10:13 am
mommyla wrote: | Why don’t you get his tonsils removed?
Some of my kids also have only behavioral symptoms when they have strep but they don’t get it as frequently as yours. |
.. tonsil and adenoid removal is not always an option for all people . Sometimes do to other medical issues or secondary diagnosis...
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