Why PANDAS? | Imamother

amother

↑ Mintcream ↓

Mon, Oct 11 2021, 1:54 pm

amother [ Jean ] wrote:

What about children who have stable homes, parents who love each other and love them and parent them in an unconditionally loving manner and are doing great in school?

This person thinks this is the case. Sometimes we’re blinded to our own deficiencies and dysfunction. Sometimes we don’t know what happened to our child.

I’m totally not disregarding that this could be real at times.
But do your own inner work in tandem to this.

It can only benefit your child with or without pandas

amother

Moccasin

Mon, Oct 11 2021, 1:55 pm

amother [ OP ] wrote:

I'm just wondering, why does everyone jump to Pandas as soon as there is any behavioral concern? My son has had differences noticeable within the first month after birth and has been diagnosed mild ASD and ADHD (he's now 8). When posters list similar symptoms, everyone starts saying to test for pandas. Is no one allowed to have ASD ADHD or anxiety anymore? Or another difference? Not every single behavior concern is pandas.

I also thought it could have been undetected autism... worms... Anything really.

amother

Pear ↓

Mon, Oct 11 2021, 1:55 pm

amother [ Jean ] wrote:

I don’t understand the second example. The kid had a change in behavior, the dr looked for a bacterial infection and found one. (Presumably, the dr treated that infection and the behavioral symptoms abated).

Where do you think the doctor got the idea to look for a bacterial infection? Nowhere in the Merck Manual are behavioral changes listed in the classic symptoms or presentation of any bacterial infection under the sun. EXCEPT for in the case of pans, pandas, neurolyme, AE, and other infections that are known to cause neuroinflammation or encephalopathies, which is exactly what pandas or pans is.

If Dr. Susan Swedo hadn’t discovered pandas, and Dr. Susan Schulman hadn’t lectured and written about it so extensively about it to pediatricians in the frum community, literally no dr would go testing for bacterial infections or viral infections if a kid presented with behavioral changes. That is literally the definition of pans and pandas. If a kid ONLY showed mild transient behaviors when they were sick and pretty much went back to baseline on their own with no extra treatment, Dr. Schulman called that “sub acute pandas” or “pandas minor” (a pandas conference at Columbia university). Still the same pathophysiology. It’s only because we have this research in the last 20-30 years that drs are even thinking in this direction.

It may be common, and more drs are commonly recognizing it, but it’s still not normal.

This x10000000

And my child has a diagnosis of PANS. It took months and months and months. Over a year to actuality come to the bottom of it and to get a diagnosis.
So no, pans and pandas are not so quickly and easily diagnosed.
And it is more prevalent in the community than you think.

Yes pans and pandas and any autoimmune disorder and chronic illness is more prevalent in people who have a history of negative stress, abuse and trauma. It's even possible to give something over to your child in utero.
I have a history of trauma. I have an autoimmune disease myself.
It's unfortunate that we get pounded twice. But it is what it is.

amother

↑ Jean ↓

Mon, Oct 11 2021, 1:59 pm

amother [ Mintcream ] wrote:

Im always quick to point out pandas because it’s the narrative we’re not being told. We are so conditioned to think emotional, that literally everyone first suspects their parenting, their marriage, school, friends etc. Most of us have more than enough guilt about all that, and it’s just not helpful. Our kids are sick, and they need medical help. No amount of parenting classes or therapy is going to fix this. Been there, done that. People that are reaching out for help are ready for a different perspective. They’ve already asked themselves if it could be other things.

amother

↑ Mintcream ↓

Mon, Oct 11 2021, 2:03 pm

amother [ Jean ] wrote:

Im always quick to point out pandas because it’s what we’re not being told. We are so conditioned to think emotional, that literally everyone first suspects their parenting, their marriage, school, friends etc. People that are reaching out for help are ready for a different perspective. They’ve already asked themselves if it could be other things.

Ah got it!

I guess I see the other side- the people who don’t know anything about emotions and are busy treating pandas without making any other beneficial changes for the child- and this breaks my heart

amother

↑ Eggshell ↓

Mon, Oct 11 2021, 2:05 pm

amother [ Jean ] wrote:

Not always.
In my case, I reached out because I wanted to hear parenting classes, parenting books, strategies that other people have found work well with intense children.

Instead I get thrown PANS, gut, inflamed brain and sent to read and research dozens of theories to maybe try.

You see maybe I will look into PANS. Or not. But while I'm busy, I still need to work with what I have. And I need to work with parenting and work with friends and work with siblings and work with teachers and not just tossing thousands on naturapathic holistic things that MAY help. And may make things worse.

amother

↑ Plum

Mon, Oct 11 2021, 2:13 pm

amother [ Mintcream ] wrote:

It might be related but it might be something going on in the child’s life.

I’m a bit jaded because someone very close to me with children with pandas has severe dysfunction and possible abuse going on at home but refuses to see that.
I bet if the children were placed in a better environment or the mom were to go for help a lot of the symptoms would ease up.

Yeah you can say the kids have inflammation and if they’d be healthier they wouldn’t act up and be effected even in this environment so let’s treat the inflammation. But how is that fair to the child?

First take a good look at yourself and your home and the child’s school environment and your relationship with your spouse and make sure it’s all good. Then work on pandas. Or do it together.

As with any major challenge, having a child with pandas can rock a stable good marriage.

amother

↑ Royalblue ↓

Mon, Oct 11 2021, 2:15 pm

amother [ Pear ] wrote:

All research indicates that PANDAS or PANS is very rare.

amother

Cerise ↓

Mon, Oct 11 2021, 2:23 pm

amother [ Royalblue ] wrote:

All research indicates that PANDAS or PANS is very rare.

Research by whom? It is now at 1 in 200 children...in random communities. In.our communities, with our histories of autoimmune disorders, it's even more.

Think one in 200 is one child per every 2 grades in a school starting from pre_k to 8th grade at least.

That is four kids PER school. Think of how many frum schools u have in ur town (lakewood, Monsey, flatbush, ch, Boro park and Williamsburg etc) and multiply that!

It isnt that "rare" at all!

amother

↑ Jean ↓

Mon, Oct 11 2021, 2:33 pm

amother [ Eggshell ] wrote:

The parenting and friends and siblings work you throw at them are more proven to work?

amother

↑ Jean ↓

Mon, Oct 11 2021, 2:35 pm

amother [ Cerise ] wrote:

Not only our history of autoimmunity, but the incidence of strep is wayyy higher in frum communities than elsewhere.

amother

↑ Jean ↓

Mon, Oct 11 2021, 2:49 pm

amother [ Eggshell ] wrote:

Yes. Because regardless of treatment you still need to parent the child and parent his siblings and have them interact.

And you’ve never met parents who have exhausted every type of therapy and parenting course and their kid doesn’t respond?
And anyways, parenting issues causing tics on ocd was freuds thing, and sorry, it’s just not scientifically accepted belief anymore.

amother

↑ Mintcream ↓

Mon, Oct 11 2021, 2:59 pm

amother [ Brown ] wrote:

My parenting was rock solid.
And still my child was a terror and a mess.
After months and months of upgrading my own patience, techniques etc I was left asking: it's NOT me. It must be my child. So what could it be??
Bh someone directed me to pandas.

I don’t know anyone who’s parenting is rock solid and can’t use some tweaking in different ways. We’re all works in progress

Not saying your kid doesn’t have pandas- don’t yell!

amother

↑ Eggshell ↓

Mon, Oct 11 2021, 3:24 pm

amother [ Jean ] wrote:

Ok. Again you're lumping all parents together.
My child never had tics, never had a stutter, no ocd.
He's a intense child who struggles with change and control and rules. He is stubborn and willful and can tantrum for a cookie for an hour and can be stubborn and willful and not give up and figure out the puzzle that is way above his age level.
And yes parenting has helped a lot. The explosive child, and learning about Respectful Parenting.
He's still stubborn and intense. But you and others would rather me run around looking for autoimmune, PANS, flaming brain, spending a fortune of money and end result will still be a stubborn and intense child who's siblings resent.