this girls parents should be shot.....

[DSTCHAOS]

Originally Posted by blueangel

I was careful to say that we don't know if she has it. I think people are too quick to judge other parents when they don't have all of the facts.

So does PW syndrome go undetected for years before it shows up on tests or something? Are the doctors and family not releasing this syndrome info to the public because they'd rather the parents be blamed or something? Or is it just a matter of inconsistent results of the hospitals' tests like what often happens with Lupus?

As already stated, this little girl has been to hospitals, has had television segments dedicated to her, and has a website. No mention of any disorder. However, there was a televised story on another little girl about a year ago who had this disorder, I believe. It was documented and that's the first thing they mentioned when the television show aired her story. Maybe this is the same little girl, I don't know.

The good thing is that she HAS lost 100 lbs. I hope she can make up for the damage the extra weight did.

[Drolefille]

Originally Posted by DSTCHAOS

So does PW syndrome go undetected for years before it shows up on tests or something? Are the doctors and family not releasing this syndrome info to the public because they'd rather the parents be blamed or something? Or is it just a matter of inconsistent results of the hospitals' tests like what often happens with Lupus?

As already stated, this little girl has been to hospitals, has had television segments dedicated to her, and has a website. No mention of any disorder. However, there was a televised story on another little girl about a year ago who had this disorder, I believe. It was documented and that's the first thing they mentioned when the television show aired her story. Maybe this is the same little girl, I don't know.

The good thing is that she HAS lost 100 lbs. I hope she can make up for the damage the extra weight did.

She's already agreed to this point btw.

[DSTCHAOS]

Originally Posted by Drolefille

She's already agreed to this point btw.

Has she answered those questions?

[AKA_Monet]

Originally Posted by DSTCHAOS

So does PW syndrome go undetected for years before it shows up on tests or something? Are the doctors and family not releasing this syndrome info to the public because they'd rather the parents be blamed or something? Or is it just a matter of inconsistent results of the hospitals' tests like what often happens with Lupus?

PWS does not go undetected, then show up on tests later. It is usually seen in children at young as 6 months when two-way peristalsis is formalized.

I think PWS is a chromosomal rearrangement similar to that of Down's Syndrome, Philadelphia Chromosome and the Fragile X. Which means the genetic counselors give the final diagnosis at karyotype.

If the physicians suspected child abuse, they are mandated by law to report it. Since there segments about this kid, and the parents were not jailed, then who knows? Maybe there is a social worker involved?

Depending on where this child lives and what physicians she is seeing, if it is not a University Teaching Hospital, then I doubt she is getting the best care until recently. Media attention tends to bring out the lookie-loos. And physicians are rather vain...

[BaylorBean]

Originally Posted by AKA_Monet

PWS does not go undetected, then show up on tests later. It is usually seen in children at young as 6 months when two-way peristalsis is formalized.

I think PWS is a chromosomal rearrangement similar to that of Down's Syndrome, Philadelphia Chromosome and the Fragile X. Which means the genetic counselors give the final diagnosis at karyotype.

If the physicians suspected child abuse, they are mandated by law to report it. Since there segments about this kid, and the parents were not jailed, then who knows? Maybe there is a social worker involved?

Depending on where this child lives and what physicians she is seeing, if it is not a University Teaching Hospital, then I doubt she is getting the best care until recently. Media attention tends to bring out the lookie-loos. And physicians are rather vain...

PWS is a genetic imprinting disease of the 15th chromosome. Inheriting a 15th chromosome with a deletion in a certain area from the father or both chromosomes from the mother causes PWS. Angelman's is the reverse of PWS (deleted chromosome from mother or both chromosomes from the father). It is a disease that has some pretty obvious characteristics that are caught quite early on in development.

So if this was PWS it would have been caught much earlier.

[AKA_Monet]

Originally Posted by BaylorBean

PWS is a genetic imprinting disease of the 15th chromosome. Inheriting a 15th chromosome with a deletion in a certain area from the father or both chromosomes from the mother causes PWS. Angelman's is the reverse of PWS (deleted chromosome from mother or both chromosomes from the father). It is a disease that has some pretty obvious characteristics that are caught quite early on in development.

So if this was PWS it would have been caught much earlier.

See, I get these 2 disorders mixed up!!! I guess when you are injecting rodents with recombinant DNA constructs, then anything can happen...

However, I do know parents of PWS and what they were telling me, they found out at 6 months. The food hoarding behavior starts when they can access the food, meaning they have some level of learning where the food is... That's why the parents have to lock up the food.

[BaylorBean]

Originally Posted by AKA_Monet

See, I get these 2 disorders mixed up!!! I guess when you are injecting rodents with recombinant DNA constructs, then anything can happen...

However, I do know parents of PWS and what they were telling me, they found out at 6 months. The food hoarding behavior starts when they can access the food, meaning they have some level of learning where the food is... That's why the parents have to lock up the food.

I always got them mixed up too. It really sucks when one of your profs is one of the leading researchers in the disease. (Really really sucks!)

[Drolefille]

Originally Posted by BaylorBean

I always got them mixed up too. It really sucks when one of your profs is one of the leading researchers in the disease. (Really really sucks!)

That has to be worse than reading the textbook written by your professor. I can't imagine what I'd do if one of my professors started citing him/herself. Ugh.

[crimsondanger10]

Originally Posted by Drolefille

That has to be worse than reading the textbook written by your professor. I can't imagine what I'd do if one of my professors started citing him/herself. Ugh.

My sentiments exactly! In grad school, one of my professors wrote the textbook used for his class and it was awful. I got tired of hearing "for example." Those were the only words in the book. It was worthless and a waste of ~$100