Tell me why you don't believe in pandas

amother

Catmint

Today at 10:40 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.

amother

↑ NeonPurple ↓

Today at 10:41 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.

amother

↑ Aster

Today at 10:54 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.

amother

↑ NeonPurple ↓

Today at 11:00 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.

amother

↑ NeonPurple ↓

Today at 12:12 pm

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.

mommyla

Today at 12:30 pm

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.

amother

↑ OP ↓

Today at 2:05 pm

So when I gave my child Motrin for his coughing ticks the Dr said he doubts it would help inflammation in the brain if it was causing it. He didn't see it as a sign of proof that there was inflammation
Re titers in blood: Dr said if he had strep any time in past six months it would show antibodies in his blood levels so no again it isn't proving anything.
His belief was an extreme change from a totally easy going kid to completely extreme behavior would be the only chance he would consider pandas . He said it's very controversial in the community and some people charge a lot of money to "treat" it basically preying on anxious moms
I do see with said child he is high strung and anxious to start with - I'm sure it we knew more we would understand the biological causes and how to treat it. It's clearly something to do with how he's wired. But I'm not sure pandas is the specific answer . I just wish there was one .

amother

↑ NeonPurple ↓

Today at 2:26 pm

amother OP wrote:

Motrin is the gold standard for treating brain inflammation caused by pandas

Here are guidelines published by doctors, based on research. Maybe you can show this to your doctor.

https://www.pandasppn.org/nsaid/

Here is a paper about nsaids for PANS

https://pmc.ncbi.nlm.nih.gov/a.....NDAS.

Or maybe you need to find a specialist that can help you.

amother

Cyan ↓

Today at 2:38 pm

Believe in PANDAS?
I think that PANDAS is abused by parents who must have something to blame on their child's poor behavior which is either a result of another condition or their poor parenting. Ironically, the parents entire attitude revolving around PANDAS then conditions their children to act even worse and they get involved in this circular behavior pattern that is hard to stop.
There is real PANDAS, but a child acting up because they have strep is not PANDAS - it's a child not feeling well. A child with more severe behavior patterns may have something like ADHD or anxiety, or simply need some petch. And don't jump on me - what is worse? Some petch and learning responsibility or taking vitamins and antibiotics and justifying bad behavior under the guise of a medical condition?

amother

↑ Marigold

Today at 2:50 pm

amother NeonPurple wrote:

Actually more like a symptom you’d get with strep (rather than a reaction) like fever or a sore throat. It’s weird but that’s what happens with some kids when they have strep. I don’t think that’s the same as pandas because it happens when there’s an active infection and goes away immediately with antibiotics.

amother

↑ Milk

Today at 2:51 pm

amother Lemonlime wrote:

This is a very interesting take!

amother

Brown

Today at 2:53 pm

I went to a top pediatric infectious disease doctor when my daughter had “missed strep” over the summer in sleepaway camp. She was really sick from it over the summer (Group A Strep and scarlet fever, then triggered mono and shortness of breath) and I ran around all second half going to specialists to see what needed to be done (pediatrician, cardiology, immunology and so on). Anyway when I went to the top infectious disease doctor I asked him about Pandas and he was dismissive of it. (He was at Northwell). I don’t want to write his name because it’s a public forum, but he seemed very knowledgeable and experienced and we trusted him.

amother

↑ Slategray ↓

Today at 2:57 pm

amother Tiffanyblue wrote:

Which doctors are you going to? If your dd is not all the way better, would you consider going further to a better doctor? My DC is by an excellent doctor and seeing major improvement. Natural remedies is not enough.

We did meds. Long term abx, steroids, ibuprofen / neproxen.
We saw better results with a combo of diet changes, vitamins/minerals/healing herbs, eessential oils and homeopathy than with traditional medicine.
The doctor suggested the next step in the medical field will be ivig which would be traumatizing and out of pocket. So we did the natural route first and bh it worked.
My child had pans (not strep. But different bacterial infection).

At the moment I am so burnt out, that I'm not capable of doing more. All my other kids are still suffering the fallout of her illness, the kid below her that she choked out and watched everything, her anxiety and ptsd is thru the roof. She's barely functional. We tried shielding her but it wasn't possible. She also mimicked a lot if symptoms becuase she saw it brought attention. It's a tough ride.
Bh my kids growing up, she's still struggling but it's not possible for me to do anything more.
I do want to take her to a cranio sacral therapist and maybe reflex integration and/ or do Mrs. Mertzbach's program. I've seen kids with tics get better with her program.
To some degree I feel like it's just left over damage rather than still ill. Her immune system is regulated. She gets I'll with fever and sore throat and / or regular viral symptoms. Her tics do get worse for a bit, but then better. And she doesn't go crazy at all. Normal regular sick symptoms.

I remember the JOY the first time she broke a fever 3 years ago. Omg was I EXCITED!!!!!

To the poster that's skeptical about the "pandas mom" self identification title - pans/pandas/ae takes over you're entire life. COMPLETELY.
The days on end where you're child will.not.fall.asleep and the times you're 4 yo child threatens you with a knife with a hollow look in their eyes. And the times your child begs you that they don't want to wake up anymore. And the times your child will.not.leave.your.side and will go absolutely berserk if someone other than immediate family walks thru your door. Or when your kid runs out of the house at 10 pm completely naked in 5° weather in pitch black darkness, hiding and yelling HELP! HELP! and you cannot find them. And all that at the same time while also being a wife and mother to other children and trying to protect them..... and being a duaghter and sister. And neighbor and friend. And when you do share it gets poopooed away or told its all "emotional" becuase you had a challanging childhood....
And the doctors not listening to you and telling you you are the problem.
I have serious serious ptds btw.
It's a whole different disease. There is ZERO support as a community. It's quiet and hush hush. No volunteers, no meal train, no one to guide and listen to you.

Bh now there is an amazing org, chay4lyme and an amazing WhatsApp chat group.
But I/we didn't always have that. And it still doesn't give any day to day practical help just living the life with an ill child.

So yes. We are "pandas moms"

amother

↑ NeonPurple ↓

Today at 3:01 pm

amother Marigold wrote:

And what's your proposed mechanism for how strep bacteria affect behavior outside of the immune response?

[I think the fact that you think this way is due to how much pandas research has made inroads in our outlook. We now think it's "normal" for strep to cause acting out, yet we will insist it's NOT pandas. Before pandas was coined, the very idea that strep affects behavior was considered outlandish. In a classical sense, bacterial infections present with LOCALIZED immune responses and all the typical symptoms we associate with strep aka pharyngitis are due to a mounting immune response in the area aimed at clearing the pathogen].

Fwiw, Dr. Shulman once gave a lecture on kids who present with behavioral symptoms while they have an active strep infections and their symptoms clear once the infection is gone. She called it Pandas minor. Because at the end of the day it's the same immune response aimed at the brain causing the behaviors. Even if it doesn't turn into a chronic condition.