where parents of kids with special needs connect
Hello, I'm new here. ;)
What a great site! I was shocked to find that my son's diagnosis, Prader-Willi syndrome, was included in the list of topics about which parents here blog. That son, Dean, is 12.5 months old and doing pretty well, and we have another son, Cole, who is 2.5 and typically developing.
Look forward to meeting some new parents around here. :)
Ali :)
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Replies to This Discussion
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Permalink Reply by Diane Vaughn on
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Hi Ali & welcome to Hopeful Parents. I'm Diane, wife to Dave and mom to 32-weeker Evan who's nine. This is a really great community, with potential to be even greater. :)
Diane.
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Permalink Reply by Alicia Bockmier on -
Welcome!
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Permalink Reply by Janice Callahan on -
WELCOME!
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Permalink Reply by Karen Snizek on -
Hello..Im new here too..my son just got his DX in may...he has a rare genetic disorder simillar to Prater-willi..I have very very little information to read up on this..its called POMC defficiency disorder one of the articles I found said that there was only 6 recorded cases. I guess his will be the 7th. Nathaniel was a normal birthweight and unlike PW he did not have a failure to thrive, but did have some reflux issues that he outgrew. he started putting on weight when we started him on solids about 5-6 months.
I knew I was not over feeding him and started feeling then that something was wrong.
Nathaniel has the hunger issues that PW children have ...always hungry never full...its really really hard to deal with his screaming! and unlike pw he is tall, he is now 37 inches and 58 lbs. I still nurse and will let him self-wean..( within reason) cant see it going past 3yrs, just because of his dx. The dr. has him on a 600 cal. diet..we just had him weighed and since starting on this diet 6 weeks now he has not gained any weight! Yay! this past year he was gaining 3 lbs a month.
he doesnt walk yet. 23 months but is standing and bearing weight. just yesterday he walked with me holding his hands! first time! I got so excited!
he has some strange auditory issues, he crys when ppl laugh or when there is loud applause...we work around it.
oh, I am 46, single, and my daughter is 26..yes my children are 25 years apart minus 1 day...lol what a surprise and a blessing
looking forward to getting to know you.
karen
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Permalink Reply by Kimberlie Morris on
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Welcome Ali,
There is a lot of great support here.
Kim
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Permalink Reply by Candice VanHooser on -
Welcome.My sister who is 12 has Prader-Willi.She was diagnosed when she was 2.She is doing fairly well.She reads,go to school,no major health problems.It's just the problems with her weight and some learning disabilities but she is doing fairly well. Your son is adorable.
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