Hold Your Nose, Here Comes April
Dance Til You Drop

Comments

greyone

Bill
Rapamune (Pfizer name for sirolimus) is an interesting drug, involved with MTOR inhibition and autophagy, used in organ transplants, I think.

discussion 70 is about MTOR:
https://www.ihmc.us

Bill

May the next month is Tuberous Sclerosis complex and Neuro-fibromatosist types 1 and 2 "Awareness" month and these are horrible genetic tumor disease more common in those with autism. In late 2020 was there a drug that was approved by the FDA and this drug could treat a major and life threatening symptom of NF called a plexiform neurofibroma a tumorwhich could become a sarcoma cancer in 20% of cases. The name of NF tumor drug is called Koselugo. No other drug is useful for these tumors. For TSC there is one helpful drug for there halmark tumor caled a SEGA and that drug is called Rapamune
which itself was only invented more recently. Why does not Age of Autism talk about these conditions very often?! "Awareness" does not equal useful treatment for any condition uncommon or common.
What about "autism"? There is a drug in trials now called Suramin invented a century ago for a rare and very deadly parasite called "Sleeping Sickness". This drug is in clinical trials for autism at UC San Diego.

Gayle

We are autism long haulers too as our son is now an adult and he also has epilepsy. He does not like to hear people fight or argue on television and when that happens he starts to hit himself in the head and is uncontrollable. We make sure we never argue in front of him as this will set off his violent reaction. We also feel that we must live forever because we have to be there for him always. The thought of him without us here is terrifying. He has an older brother who we are hoping will be able to look out for him and he must live longer than his brother to be his guardian for life. April is not a month to celebrate, but a month to be very sad and very frustrated at the lack of progress toward the research needed to find a cure for our medically ill children who are suffering from a neuroimmune dysfunction. We pray every day for this miracle to happen. Our children can be cured if we recognize that they have an illness that can be treated. We have an autism doctor who specializes in treating our son and others like him and he just needs the medical world to acknowledge and become aware that what he is saying is correct and that there is hope for us all.

TOB

That is an incredibly sobering video, Andrea. Watching it, I guess one thing is better today--I imagine fewer autism moms get dirty looks in grocery stores, because most other people are aware of what's going on. Thinking back on my own experience, though, I became "aware" not because of awareness campaigns, but the same way I became aware of life-threatening food allergies: because they happened in my own family, and to people I knew.

The other issues the moms raised, like the high cost of therapy, the medical debt, the difficulty of finding appropriate educational settings, and the idea that they can never die because who would care for their kids... I don't think any of those are any better. Am I wrong? Does a standard Aetna plan cover more than it did when that video was made?

Andrea

Good morning Kim. We're both autism long haulers. Our kids all in their 20's. And I have to say in my son's case things have become more challenging as an adult. Once he started having seizures at 21 years of age he's become more aggressive, self-injurious & destructive. I can no longer go anywhere alone with him. People used to tell me things would get easier as he got older. Unfortunately the exact opposite happened. But we keep trying to improve his communication abilities & do things he enjoys.

I would love for Autism Speaks to update the world on the kids highlighted in their Autism Every Day video from 2006. I know Christian the motivation for starting Autism Speaks is in Residential care & still like many of our adult children a non speaker.

For those who may have never seen the film here is a glimpse. I believe the original was longer, but many people objected to the portrayal of autism & bullied their way into getting AS to recant & remove it. Can't believe youtube hasn't removed it & labeled it misinformation.

https://youtu.be/O0vCz2KWMM0

Bev

It brings a feeling of sadness and resignation that this increase is being normalized and ignored. Celebrating the accomplishments is fine but at what cost? My young grandson is making great strides but as his mom says :"Nobody knows how hard he works to just be normal."

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