- Joined
- Feb 24, 2019
Yep there is no reason shes not learning even modified sign we use in classrooms which does not reqire dexerity of fingers.
And she could get OT/PT her mother refuses it.
Community Tard Baby General (includes brain dead kids) - Fundies and their genetic Fuckups; Parents of corpses in denial
- Thread starter jurassic bark
- Start date
And she could get OT/PT her mother refuses it.
jimothyleery
kiwifarms.net
- Joined
- Jan 27, 2022
Allowing in outside help would put her full-time caregiver mama grift in danger.
Do you know how that boy is doing now? He, however, looks very alert and that he's had the best of care all along.
The thalidomide program is called iPLEDGE. I saw some booklets about it in the office of the dermatologist I saw yesterday for unrelated reasons. It said "For men, and women who cannot become pregnant."
- Joined
- Feb 24, 2019
Can't find anything recent, but ran across this little guy with it and poor guy. Sometimes you have to question if all the medical things we can do are worth it for the quality of life they will have.
jimothyleery
kiwifarms.net
- Joined
- Jan 27, 2022
The ancient civilizations that threw the deformed kids off the side of a cliff may have had it right.
- Joined
- Feb 20, 2021
Almost certain that this is Pfeiffer syndrome type II. The head deformity is a particularly severe kind of craniosynostosis called Kleeblattschaedel, which is German for "cloverleaf skull".
There are 3 clinical subtypes of Pfeiffer syndrome, all of which are inherited in an autosomal dominant manner. Type I, or "classical" Pfeiffer syndrome is caused by a mutation in a gene called fibroblast growth factor receptor 1 (FGFR1) and is the only subtype considered "compatible with life". Types II and III are caused by a mutation in FGFR2, which results in a much more severe phenotype, almost always resulting in stillbirth or death in the neonatal period. Types II and III can be distinguished because the latter is not associated with the distinctive skull malformation seen here.
I've mentioned previously that the pop musician Prince had a son, Amiir, who was born with Pfeiffer syndrome type II in 1996. It was especially traumatic because it was not diagnosed until birth. As you can see, the characteristic deformities are horrifying, even for parents who receive prenatal diagnosis.
A specific mutation in another fibroblast growth factor receptor gene, FGFR3, causes thanatophoric dysplasia, which is what Tard Baby Paisley has. Among other functions, the fibroblast growth factor receptors are essential for the regulation of fetal central nervous system development, and mutations in any of them can cause catastrophic malformations of the brain. This is why I believe that Paisley is severely to profoundly disabled.
Fiat Lux XOXO
kiwifarms.net
- Joined
- Jan 6, 2022
"
When asked why Paisley's always lying down, she said that's when she's most comfortable and sitting obstructs her breathing. She already goes through spells where she turns blue and stops breathing. So who knows, maybe trying to get her to sit would kill her. Basically, she's screwed and subjected to a grim existence until it's time to join the potato patch in the sky.
Mother claims no one will come to their house and driving to physical therapy is too hard on Paisley... They live in the Atlanta Metro area so I find what she says hard to believe... Mind you, this is the same person who thinks she knows better than doctors and nurses so maybe she's decided Paisley doesn't need therapy.
When asked why Paisley's always lying down, she said that's when she's most comfortable and sitting obstructs her breathing. She already goes through spells where she turns blue and stops breathing. So who knows, maybe trying to get her to sit would kill her. Basically, she's screwed and subjected to a grim existence until it's time to join the potato patch in the sky.
- Joined
- Feb 24, 2019
From what the post said that is a huge encephalocele most of the brain is outside of skull.
- Joined
- May 25, 2013
Is that even compatable with life? I thought brain outside the skull shit was generally fatal.
So not only does this kid have the deadliest form of dwarfism, but it also has most of its brain outside the skull? Talk about drawing an unlucky hand
- Joined
- Feb 24, 2019
I think they only lived a few months.Is that even compatable with life? I thought brain outside the skull shit was generally fatal.
So not only does this kid have the deadliest form of dwarfism, but it also has most of its brain outside the skull? Talk about drawing an unlucky hand
There is a documentary about the after affects of chernobyl with a 4 year old whose entire brain is outside her head. Her portion is at about 12 mins 20 seconds in, be warned the nurses are pretty horrid to some of the kids in the documentary thats why this Irish organization went in to help the children from being abused.
This looks like an encephalocele, and chances are, the parents were told, and agreed, that the baby should have comfort care only.
There's an ongoing story, which I referenced earlier in the thread, about a little boy named Bentley Yoder who had something like this, although it's not as severe, and they were able to put everything back in his head. This, of course, involved a plastic and neurosurgery team. He has a Facebook page, and was alive as of September 2022. He's disabled, with a G-tube, but he does appear to be a loving and loved child despite his challenges.
Oracular Slug
kiwifarms.net
- Joined
- Aug 6, 2022
Still, they could at least stick a screen and sesame street above her.
- Joined
- Feb 20, 2021
Interesting. That appears to be a pretty unusual presentation for an encephalocele. It's huge and in the parietal midline.
I feel like I come across as an asshole when I talk about Paisley, in particular, but in general, people with profound intellectual disability have very limited communication skills.
In this case, "profound" means something specific; namely, that the person's intellectual functioning is more than 4 standard deviations from the mean for their age, which is equal to the 0.003rd percentile. Less than 1% of all people with intellectual disability are diagnosed with a profound ID.
Some profoundly disabled people might be able to recognize their caregivers and indicate their needs and preferences nonverbally, but they usually do not develop the ability to conceptualize language or communicate in a complex way. Additionally, profound ID is often associated with an underlying congenital syndrome which causes additional physical limitations precluding effective communication.
Again, I feel like I sound like a dick, but I just wanted to clarify that in this case, "profound" actually has a specific meaning. I don't think Paisley is able to conceptualize thoughts enough to communicate with sign language or AAC. The mutation she has necessarily means that parts of her brain did not form correctly.
(Also I recognize that IQ is mostly bullshit, but it's the only bullshit we have.)
- Joined
- Feb 24, 2019
Adding on to what was said when people like me work with these populations and teach modified sign language it's not like they gain a huge vocabulary most its only about 5 or 6 signs if that.
Mainly it is:
Yes. No. Bathroom. Eat. More. Done. Work.
And ususally its with prompting.
Mainly it is:
Yes. No. Bathroom. Eat. More. Done. Work.
And ususally its with prompting.
- Joined
- May 25, 2013
Yeah that's what I mean. I don't expect her to ever have the capacity to construct a sentence, but a few basic modified signs.
It's certainly worth giving her more opportunities than just use as a prop for her mom to shill balding shampoo.
It's certainly worth giving her more opportunities than just use as a prop for her mom to shill balding shampoo.
- Joined
- Dec 28, 2014
Quit apologizing for just telling the truth. I know, it's tough. You don't sound like a dick. You sound like someone who cares.
- Joined
- Feb 24, 2019
It's amazing that people are falling for the monat shit and dont remember how she dropped them earlier.
- Joined
- May 25, 2013
Feels so good to have gotten another sucker on her downline more like
- Joined
- Jan 15, 2017
while i know the venn diagram between crunchy moms and weird potato parents encroaches on becoming a circle, somehow it's so bizarre to see someone using monat on their baby's malformed head.
- Joined
- Feb 20, 2021
Monat is the stuff that makes people go bald right?