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Karen Snizek's Discussions
hello
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Yes, Im new to this whole thing!I'm an "emplty-nester" then god decided he wasnt dont with me. My son is 25 years younger than my daughter. and just this May we got his Dx. POMC defficincy disorder.…Continue
Tags: overgrowth, POMC, Prader-willi.
Started this discussion. Last reply by Mary Hill Jul 22, 2010.
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- Are you a parent of a child with special needs?
- yes
- Are you an author or contributor of any books about children with special needs and/or parenting them?
- no
Yes, Im new to this whole thing! I'm an "emplty-nester" my daughter is 26...
then the "powers that be" decided that they weren't done with me. Thus enter Nathaniel
This May we got his Dx.
POMC defficincy disorder. a rare and orphan disease with no cure…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 PWS 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 PWS children have ...always hungry never full...its really really hard to deal with his screaming! and unlike pws he is tall, and does not need GH 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.)
and 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.
then the "powers that be" decided that they weren't done with me. Thus enter Nathaniel
This May we got his Dx.
POMC defficincy disorder. a rare and orphan disease with no cure…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 PWS 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 PWS children have ...always hungry never full...its really really hard to deal with his screaming! and unlike pws he is tall, and does not need GH 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.)
and 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.
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