Why PANDAS? | Imamother

amother

Tan

Mon, Oct 11 2021, 8:39 pm

amother [ Cerise ] wrote:

Are u the pandas expert to tell us that it isn't as common as we say it is? But wait, u know what is so so so "common" and rampant in our communities? Mental health issues, ASD, ADD, suicides, eating disorders etc.

U know that my son presented as anorexic until we found the lyme? (He was 7) and did neurological workup which hit pay dirt?

Tell me why I shouldn't scream out to the world that there can and usually is a medical cause for eating disorders and they can be cured without trying to fight it their entire lives?

You want to say that not all mental health issues are neurogically based, and they need psychiatrist or psychology or parenting experts.
I am saying, that after my experience, it makes so much sense to say the exact opposite. Every mental health issue is caused by something happening in the brain or CNS. And science and research is well on the way towards that.

Im repeating what the psychiatrist told me. And psychiatric medicines target the brain so I'm not sure why anyone would say anxiety or eating disorders or add are not related to the brain? They are.

amother

Jean

Mon, Oct 11 2021, 8:47 pm

amother [ Cerise ] wrote:

Bravo amother Cerise! Honored to have you our corner!

amother

Starflower

Mon, Oct 11 2021, 9:44 pm

I think it's important that instead of using obscure medical terms like pans/pandas and psychiatric, we redefine them by the root cause: as neuroinflammation and chemical imbalance, respectively. (Let's put aside trauma for now.) It's also important to understand what each path offers that the other may not.
We still unfortunately know so little about the brain that when a child acts "psychiatrically" whether sudden or not, we have no absolute way of knowing whether the cause is inflammation or chemical imbalance (which few people even recognize is thus far an unproven, though widely-accepted theory).
We do know that psychiatric medications can pose serious risks for children, is generally needed life long and is limited in it's ability to return the child to full health, especially those that are more sick. Though, the typical child with a more straightforward issue such as ADHD may be greatly helped with such medications, but there still may be more to the story.
Of course, exploring inflammation of the brain has it's drawbacks. It is not yet well-studied and thus diagnoses and the right treatments, as well as acceptance from others, may be hard to come by.
However, it is important to recognize that it does hold the promise for full recovery, fewer serious side effects and shorter term treatment. It also has much more concrete scientific backing, as scientists have discovered inflammation in the post mortem brain tissues of people with brain disorders. Inflammation can also be evidenced in some patients (when one looks) in the CSF and brain imaging. In recent times, researchers have been learning a lot about the immune system, inflammation and infections, which is thought to be a wide-spread problems as infections and resulting autoimmune issues are growing in prevalence.
In contrast, we continue to know little and have no real evidence into the chemical imbalances of people with brain disorders.
So it is understandable and appreciated that parents, especially those let down by the psychiatric path, share their trials and missteps in an effort to guide and warn others. They worry, rightfully so from their and others' experience, that waiting can make the child sicker and the inflammation harder to treat.
In our understanding of the medical process, it sounds very rational to explore the more curable path first. If only we had more treatment and research, but this will only happen with more voices and not silencing those crying out.
We have to recognize that we are all this together fighting for our children's health. So thank you all for sharing your experiences and hard-earned knowledge! Each day through this pandemic we are learning more and more about the immune system and its impact on different body systems. Hashem should continue to provide the knowledge we need to bring refuahs and clarity for all!

amother

Pear

Mon, Oct 11 2021, 9:46 pm

amother [ Jean ] wrote:

I wonder about it too but I’m guessing bigger families and more contacts. Just like covid spreads faster in frum communities. That just my hypothesis.

I Will tell you how,

My neighbors dd who attended the same school as my child, travels with the same bus.... has had on and off fevers and a very resistant strain of strep for 3+ weeks.
This child went to hakafos in shul, and within 12 hours after switching to a new stronger abx she was on the same bus as my kid. Possibly still with a fever. This was the first Monday back. Mother was desperate for some routine..... Then on the way home from school the kid vomited on the bus.,... the next day she stayed home......
My kids strep swabs can take a few days to show positive. Meanwhile they go berserk. And crawl the walls at home....
I didn't wait for her to get sick, I just called her pediatrician and being that we have a history of pans/pandas in the family I got her treated prophylacticly..... I wonder how many people this child infected over the last 3 weeks......
It's insane what's going on. that's how you have do much strep and viruses going around all the time.

If you or your child is sick, STAY HOME / KEEP HIM HOME. KEEP AWAY FROM OTHER PEOPLE.
THANK YOU

therapistmom

Mon, Oct 11 2021, 9:59 pm

Reading through these posts I am trying hard to be "Dan l'kaf zchus" but I am coming up with disgust. None of you should know the horror of PANS/PANDAS or the broader ailment of autoimmune encephalitis. None of you should know what it means for your lechtig happy A+ social child. To regress into an autistic state. To forget to bring their coat home in the winter.To suddenly become low tone. To develop seizures. To have vision become distorted. To try to jump out of a car when they used ti take long trips. None of you should know what it means to search for drs who treat only to find that barely anyone cares that you child is on the verge of becoming catotonic. The horror of hearing from Drs at Columbia and government institutions that for some reason are community is disproportionately effected. Imagine covid if drs didn't care to learn where would we be. That's where we're left. B"h for the select few drs at institutions such as Harvard Yale Columbia the NIH who care to explore. SHAME on the "experts" who dont care to do a simple pubMed search for the latest in research. Bh for those who do care. Because of them and intensive medical treatment in a hospital my child is healing his memory is coming back his personality has returned. I specialized in close to two decades of working with oppositional, autistic and children with various medical conditions. I never learned about this in school and I would never assume to know what someone else is going through. But now that I've been through I know it is a horror, the science is solid and but the judgment in this or any illness is disgusting. I am more than happy to discuss cytokines, leukocytes, mass cells etc with any if you who think you can keep up. And for those of you who think you know what you're talking about here's a post of a child with PANDAS/AE let's see how quickly you pass judgment than. https://youtu.be/-nNk4W-LmOQ

amother

Tan

Mon, Oct 11 2021, 10:02 pm

therapistmom wrote:

NO ONE is judging this.
People are asking about why PANDAS is the first suggestion for a 3 year old stuttering with everything else normal etc. Or for a 5 year old who is acting hyper with friends over. There is a huge disconnect here. No one is calling real PANDAS not PANDAS.

therapistmom

Mon, Oct 11 2021, 10:21 pm

amother [ Tan ] wrote:

What exactly is "real PANDAS." The brain has so many layers and controls so many aspects. Symptoms present differently in each child depending on area if brain being attacked and the intensity of the attack. Many parents have seen there children with encephalitis present with stuttering or attention issues. These parents are on to something. Why can't it be that an infection is causing only one or two symptoms in some children. Does it hurt to a quick swab or aso titer. It's a matter of a few hours. I have seen with my own eyes many kids stuttering subside when an "asymptomatic" strep infection was treated? What is there to lose? There are plenty of years ahead where the child can learn "easy onset" or spend months if not years at The American Institute for Stuttering (highly recomended if there is no occult infection btw) also let's start to think do we really think strep is the only cause of children's brains being attacked? Research says no.. Again this is light years ahead. But while where in the present day, is a simple swab so hard to do. If it's only a tiny possibility that it'll save your child years if misery in the future wouldn't you want to spend the time and just culture?

therapistmom

Mon, Oct 11 2021, 10:24 pm

amother [ Oldlace ] wrote:

What’s can you do for brain inflammation anyway?

My sister was misdiagnosed for 7 years until she was finally diagnosed with having a brain injury and all the doctors basically told her there’s nothing to do, go home and just live with it.

Eventually my mother found doctors willing to treat but it’s not simple at all. She’s on a ton of medications, in many different types of therapy, and there’s no cure. It alll helps her but she’s still struggling somewhat and her personality completely changed.

What was the exact brain injury?? What treatment is she doing? No it's not simple but shame in the Drs. Who refused to help at the onset.

amother

Starflower

Mon, Oct 11 2021, 10:25 pm

amother [ Oldlace ] wrote:

What’s can you do for brain inflammation anyway?

My sister was misdiagnosed for 7 years until she was finally diagnosed with having a brain injury and all the doctors basically told her there’s nothing to do, go home and just live with it.

Eventually my mother found doctors willing to treat but it’s not simple at all. She’s on a ton of medications, in many different types of therapy, and there’s no cure. It all helps her but she’s still struggling somewhat and her personality completely changed.

This is the exact reason parents are so frightened to miss the neuro-inflammation (e.g. PANDAS). Early treatment is crucial. Sadly, like most other illnesses, each year it's not treated properly makes it harder to treat and heal fully. Wishing your sister a complete refuah!

amother

Petunia

Mon, Oct 11 2021, 10:26 pm

Yeah my son has had clear adhd since babyhood. He also has something else- some asd tendencies- although I wouldn’t classify it as asd. It’s more like splintered development but he’s always been like this and in fact has gotten a bit better in certain things over the years. In addition, my husband has severe adhd as well. I actually did test for pandas years ago just to check and rule out but it’s a fad. Some people takka have it and I’m happy there’s awareness so that they can get help but not every child with behavioral challenges or difficulties at home or in school has pandas. I would venture a guess that it’s not even most.

amother

Oldlace

Mon, Oct 11 2021, 10:48 pm

therapistmom wrote:

What was the exact brain injury?? What treatment is she doing? No it's not simple but shame in the Drs. Who refused to help at the onset.

She suffered a bad fall which led to a cracked skull I believe, she needed major head surgery at the time to just save her life. The doctors didn’t think she would live. Happened when she was 6. Brain injury symptoms can come out years later.

I’m not sure about the therapies she’s doing now. I do know she is married with 2 children now and has a good job. She’s worked really hard to get to the place she’s in.

therapistmom

Mon, Oct 11 2021, 10:52 pm

amother [ Tan ] wrote:

Im repeating what the psychiatrist told me. And psychiatric medicines target the brain so I'm not sure why anyone would say anxiety or eating disorders or add are not related to the brain? They are.

Unfortunately there are many psychiatrists who think they know what they're talking about but in actuality.... Just because something looks like a duck doesn't mean it's a duck.....saying medications are geared towards treating the brain is very simplistic and unfortunately lacking and understanding of how the brain and neurotransmitters etc work. These medications are not created to treated demylination of nerves in the brain or inflammation in the brain. In fact they can actually irritate the injured enceohalytic brain and cause an increase in anxiety or agitation.