Tell me why you don't believe in pandas

amother

↑ NeonPurple ↓

Thu, Dec 19 2024, 8:27 pm

amother Purple wrote:

Pseudoscience is calling out a misrepresentation of science. Nowhere does it say that treating the "brain inflammation" healed the ASD - besides a few anecdotal antidotes which are not to be trusted.
and How about researching evidence based practices and starting with that first? if you want to do other research, once ur child is getting help, I have no trouble with that.

That's exactly what the articles said. Treating infections and immune dysfunction caused a reduction in ASD symptoms. Some treatments targeted just inflammation such as ivig, suramin and LDN. And some targeted infection triggered brain inflammation like lyme, candida, herpes.
It's may be a small sampling, but it's not pseudoscience and it's not misleading.
And it's not about trusting or not trusting. It may not be enough to make blanket statements about every person with ASD or come out with official medical guidelines, but there's enough plausible reason to logically give it a try.

Most people I know actually start with ABA, which is currently the only evidence based "treatment" for ASD. They turn to other treatments later.

rose613

Thu, Dec 19 2024, 8:55 pm

amother OP wrote:

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 .

Have you looked into other ways to support your child?

Vitamins, diet changes, OT, movement, homeopathy?

I saw improvement after cutting out very processed foods and food dye and giving vitamin d and tumeric.

I’m now working with a holistic provider doing gluten free/dairy free and bH bH it’s really helping dc

This is after over a year of trying specialists, abx, Motrin, Benadryl etc

↑ Trademark ↓

Thu, Dec 19 2024, 9:13 pm

amother NeonPurple wrote:

Pandas is a type of autoimmune encephalitis. Some cases of autism are also caused by autoimmune encephalitis.

https://www.annallergy.org/article/S1081-1206(23)00628-2/fulltext

https://pubmed.ncbi.nlm.nih.gov/34975576/

Still doesn't answer the questions.

Pandas it's caused by an acute infection of strep which is treated with antibiotics. The strep infection is treated not any brain inflammation.

I still don't get what pandas has to do with autism.

https://www.encephalitis.info/.....D_BwE

Do you see anything about treating brain inflammation with antibiotics?

Again I'm saying people are conflating two things.

With pandas this strep is the cause, and it's treated with antibiotics as it's an infection.

Even if studies shows that brain inflammation causes autism it still has nothing to do with pandas and is not treated with antibiotics.

Basically what I'm saying is the brain inflammation point is moot. Pandas is a viral infection that causes neurological symptoms.

amother

↑ NeonPurple ↓

Thu, Dec 19 2024, 9:23 pm

Trademark wrote:

Strep is bacterial, not viral. But it's not the bacteria that causes the symptoms. It's the immune system mistakenly attacking the brain instead of the bacteria that causes the symptoms. When the immune system mistakenly attacks the brain, that is called autoimmune encephalitis -- in plain english: immune system attacking self, causing inflammation in the brain.

Some cases of autism are also caused by autoimmune encephalitis, or the immune system mistakenly attacking the brain.

So Pandas and some cases of autism share a disease mechanism.

amother

Wisteria

Thu, Dec 19 2024, 9:53 pm

amother Slategray wrote:

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"

100 percent. My DC is so much better now but just reading this brought back all the worst days, weeks, months, years and such horrible memories. Major PTSD. Was so hard on the family. We were all beyond miserable and terrified and broken. I did not have a life then. I could not have a life then. Was definitely a "PANS MOM" those years.

And yeah, I'm totally normal. And yeah, I spent years getting useless, unhelpful psychological, behavioral and psychiatric diagnosed and "help" for this DC from top specialists in top hospital in top city. And no, it wasn't my parenting and yes, I had other normal kids I raised. And no, nothing really worked until I discovered PANDAS/PANS on my own. (And yes, Lyme). And took charge of his care and went to "less traditional" but much more knowledgeable doctors. And yes, it's a terribly lonely and terrifying experience. I don't wish it on anyone.

↑ Trademark

Fri, Dec 20 2024, 4:38 am

amother NeonPurple wrote:

It seems like you want to wish away autism with antibiotics. It won't work because it's not an infection, which pandas is.

You're just ignoring the strep infection part so it fits what you want it to be.

If you read nih article you would see that pandas is clearly linked to a strep infection and that's the root cause.

amother

↑ NeonPurple

Fri, Dec 20 2024, 4:52 am

Trademark wrote:

Pandas isn't a strep infection. It's an immune response directed at the brain triggered by a strep infection. There's a big difference. It's is considered a *post* infectious disorder. It's an immune system disorder, not an infection.

When we treat pandas with antibiotics we are not necessarily treating the active infection. In many cases that is already gone. We are sending a message to the immune system that it can stop It's attack on strep -- and on the brain.

Pandas is often treated with treatments that don't target strep at all, but do target the immune response, ie ivig, steroids, pex, ldn, ritux.

Autism can be caused by an immune response directed at the brain, triggered by any number of things, not excluding strep. This is an established scientific fact.

Hence, some cases of ASD may be helped by long term antibiotics or other immunomodulatory treatment, as has been evidenced by several published case reports and small studies.

It's seems people here are bent on denying this.