What is Prader-Willi-Syndrome
Prader-Willi Syndrome (PWS) is a genetic disorder in which seven genes (or some subset thereof) on chromosome 15 are missing or unexpressed (chromosome 15q partial deletion). <...
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By andreasalazar
09/08/09 |
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By fran22
03/04/09 |
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Posted in As we are all aware, we are currently facing an epidemic of childhood obesity. We are now approaching 20% of our children being defined as ... Read More ยป
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Hi everyone I've been very busy organsing Chri...
fran22 Nov 20, 2009
Friday, November 20, 2009 |
Hi everyone I've been very busy organsing Christmas I am in remission from my meneriers but my other ear is starting to give me trouble dizziness on bending etc All our tvs in the bedrooms have gone off ths week and we haven't been able to have them fixed what a miss they are. My daughter has had trouble with her house mate which ended in her having her kitchen trashed w...
1 Recommendation
3 Comments -
Well it;s been 2 weeks since Kay went to live with...
juggling3 Oct 03, 2009
Saturday, October 3, 2009
Well it;s been 2 weeks since Kay went to live with her cousin in Oregon. She is doing very well. We are in the last stages of packing and getting ready to move back to Oregon too. Computer will go down at 5 so we'll be ready to go on Monday. Lots of last minute things to do. Hope this is the best way to go. -
We couldn't wait for this day. Back to school ...
juggling3 Aug 17, 2009
Monday, August 17, 2009
We couldn't wait for this day. Back to school and a break for us. Little did we know we would be on the run and no time to do what we wanted for ourselves. Tommorow is an other day.2 Comments -
Again Mike has been rushed to the hospital with a ...
juggling3 Aug 09, 2009
Sunday, August 9, 2009
Again Mike has been rushed to the hospital with a gran mall seizure. At this time he is holding his own but on a vent. We will be taking him back to the northwest Sept 15th. The dr's feel the high temps here are making him worse. So hard to sit at home while he is in the hospital but with no one to help us someone has to stay with the other kids. Pray we have an other chance with him tomorrow -
This weekend has been the worse we have ever had. ...
juggling3 Jul 15, 2009
Journal Entry for July 15, 2009
Wednesday, July 15, 2009
This weekend has been the worse we have ever had. Almost lost Mike to these seizures. If I had not been in his room I'm sure he would have died.Even the Er dr didn't think he could make it after a 2 plus hours of non stop seizures, but it just goes to show you the power these little guys have. He is home but still having them even on 1250 mg of depakote. Can't wait to see the dr at th... -
we have finally found some help for K. She has bee...
juggling3 Jun 17, 2009
Journal Entry for June 17, 2009
Wednesday, June 17, 2009
we have finally found some help for K. She has been so good for 2 days. says it is hard to be good but wants to try so she can stay home with us. -
things are getting a little better. Dr is helping ...
juggling3 May 09, 2009
Saturday, May 9, 2009
things are getting a little better. Dr is helping not so much in daugther but in our understanding of her. K is so different from the boys it's too easy to overlook her needs. So we'll try a new way to reach her. This will be day1. -
mike is homeThings are going much better. Mike is ...
juggling3 Apr 08, 2009
Wednesday, April 8, 2009
mike is home
Things are going much better. Mike is home and we moved into a good school district. He has only gone to school 2 days so it's still a honeymoon time. CPS hasn't made an moves to end their case but they also haven't even seen him so guess it won't be long. I know we are in the right but it sucks to be ontrolled. -
Today is Palm Sunday the day Jesus arrived a...
fran22 Apr 05, 2009
Sunday, April 5, 2009 |
Today is Palm Sunday the day Jesus arrived at Jerusalem. He arrived to hails of the king of the Jews has arrived praise be to God (riding on a donkey.) The crowds placed their coats and palms leaves for him to ride on. What a glorious day that must have been. It soon turned against him and he was cruelly nailed to a cross and died that our sins may be forgiven. ...1 Recommendation -
MEANT TO SAY HOPE TOMORROW DOES NOT BRING SET BACK
fran22 Mar 18, 2009
Wednesday, March 18, 2009 |
MEANT TO SAY HOPE TOMORROW DOES NOT BRING SET BACK1 Recommendation -
as we thoght things were getting better for our mm...
juggling3 Mar 18, 2009
how our life got turned upside down
Wednesday, March 18, 2009
as we thoght things were getting better for our mmr/pdd child CPS stepped in and said I abused him. He doesn't understand time or events. Can't tell play from realty. He doesn't talk will and has fits of rage. After 2 months at a school for behaviors not ddd he broke out in an extreme rash which he scracthed until it bleed on his bottom he is not potty trained at 6 but mentally only 3... -
Well she did it again my foster daughter didnt com...
fran22 Mar 08, 2009
Sunday, March 8, 2009 |
Well she did it again my foster daughter didnt come in from school on Friday gave her until 9pm because we really didnt want to phone the police again , but when she didnt come in we had no choice. She couldnt be found at any of her usual haunts the police came and we filled the 34 page missing persons report again. The police left at 10.40 p m and she walked in at 10...1 Recommendation1 Comment
Friday, November 20, 2009 |
Hi everyone I've been very busy organsing Christmas I am in remission from my meneriers but my other ear is starting to give me trouble dizziness...
1 Recommendation
3 Comments
Prader-Willi Syndrome Information
Prader-Willi Syndrome (PWS) is a genetic disorder in which seven genes (or some subset thereof) on chromosome 15 are missing or unexpressed (chromosome 15q partial deletion).
PWS is characterized by hyperphagia and food preoccupations, as well as small stature and mental retardation. In 2000, the US FDA approved the use of growth hormone treatment for treating symptoms related to PWS. It appears that HGH has some positive effects in reducing both the hypotonia and hyperphagia (excessive eating) aspects of the disease.
PWS is identified in approximately one in 25,000 births.3 Because many affected persons are not diagnosed at an early age, this statistic is likely an underestimate. More realistic estimates of PWS prevalence range from one in 10,000 to one in 15,000. PWS affects both sexes equally and occurs in persons of any race.
See more Prader-Willi Syndrome Information.
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