Mango Mommy Don't feel bad :(
MangoMommy, don't feel guilty. People of my age used to ALWAYS trust their doctors... we let them tell us to feed our babies formula instead of breastfeeding, we let them circumcise our sons without even KNOWING we had a choice, and we even let them choose our child's sex in cases of ambigous sexed children. The guilt could be overwhelming if we let it.
Originally Posted by MangoMommy
Just know that now you are informed, knowledgeable, and capable of making better choices. That's called progression...
Don't do guilt. ;)
GOOD FOR YOU!!! My brother was born with prader willi syndrome & my mom went through all of that too! We grew up on a high raw diet but then went to sad in our teenage years (my brother is a year younger than me). He is not retarded like many of the children with this disease but he always did have a weight problem. Three years ago at 18 he weighed 350lbs at 5 feet tall. He was put in a group home where the is 80-85% raw and he is now down to 140 lbs, the majority of the weight which is left just hangs off of his body in excess skin...but hopefully uping the raw will bring it all back where it needs to be.
Originally Posted by iceblueyes
They do still have him on all kinds of medication, to regulate his moods and his sleeping patterns...I want to get him taken off of this meds but in his living situation they will not.
Is your child on meds? I know a lot of the behavior probs associated with this disease begin to develop later in life but have the doctors insisted on anything yet?
My son is not on medications, we do have him on a very strict caloric intake, mostly raw. He does take herbs and supplements for problems that may occur. We do notice that as he gets older his OCD'S come in waves. Get worse and then better. He is very sensitive to any changes in his world. Just his older sister graduating from HS, he started to pull out his teeth and body hair. For that we mostly work on behavior modification and keep him structured. Our home is alarmed so we know if he is attempting to steal food. We learned that from a behavior specialist. He learns where the alarms are (kitchen and bathroom) and avoids the areas and learns to ask to gain acces. IT is very stressful and naturally we can't leave him with a babysitter. I am also a single mom, his father gives no support because he said he doesn't have to because he is adopted. I have a wonderful man in my life who is an excellent father figure and that is good for Josh. This little boy is so remarkeable I would not change my life at all, he has taught me so much! I am grateful to be his mom.
Originally Posted by mindelicious
Where is the group home that is mostly raw? That is my only dilemma ~ what to do when he becomes an adult?
Thank you, Kim
Mangomommy-I'm from New Hampshire too!
Bdraw-definitly get another doctor ASAP! I can not believe they recommended wessen oil although I think what they were trying to say is add more fat/calories.
I wouldn't worry too much, if you are feeding your child a healthy diet with enough calories. Some children are just naturally very skinny.
Also getting a young child to eat can be like pulling teeth.
How many of us have had 2 year olds who get by with drinking milk or juice and nothing else all day. They are like little fasting maniacs. And how many mothers of those 2 year old have called the doctor, worried that something is "wrong" with their baby who refuses to eat?
I believe until a child is 5-7 they just don't eat much at times. Then you can't stop the little buggers from eating you out of house and home, especially in those early teen years.
So my opinion is quality over quantity. And when they are hungry they'll eat.
Raw Step by Step
"We can do anything we want to do if we stick with it long enough." Helen Keller
I admire you for adopting. My husband and I agreed that we would adopt if we haven't had any children by the time my husband is 30, which is coming up before you know it.
He lives in Willow Street, PA. It is a really great program. There is about 5 individuals that live in the same house, they have jobs (he makes as much as I do!!), the have chores, nightly exercise, and they take turns preparing dinner. They have monthly dances where he met his girlfriend. They really encourage them to get married, the government will provide an individual that monitors expenses, food, & maritial issues. He is allowed to come home for special occasions and weekends, and during the week as long as it does not cause a lot of change in their schedule (they hate that). He has come a long way. High school was the worst, I wish my mom would have homeschooled him.
Originally Posted by iceblueyes
There is a yahoo group for siblings of PWS kids....if you have other children. I talk on there a lot to the younger kids growing up with it.
what are you typically feeding her on any given day? my son is 4 and high to all raw depending on the day. he loves almond mylk (i add bananas & young coconut water and meat to his though for more calories), you could also try virgin coconut oil, hemp protein powder, adding avocados to stuff she likes, having trail mix readily available for if she gets hungry.... just some thoughts. also just having a BIG basket of fruit on your table so if either of your kids get hungry they can eat on that!
my blog: www.ethicalcentral.com/main
I can actually believe all of this, since many "behavioral specialist" are nuts!! lol. My sister was adopted from St. Petersburg, Russian when she was 11 and I was 10, and she was very very skinny and her mentality is lacking in some areas. She has fetal alcohol, depression...and the list goes on. We've been to so many of these "specialists" that it's sickening. And a behavioral specialist has no business in tell you what to feed your child, especially something as harmful as vegetable oil! They think they know everything, but know very little. One tried to "hook" my sister up with a guy at a hospital she was at...and he stayed in the Sexual Offenders houses!!
Also, be careful about homeschooling a special needs child. We found out the hard way that it is illegal here to do so. And the county sent a teacher and suggested it!!
I'm sooo happy you adopted though! It's great that you gave a child a great home! Where is she adopted from?
6/26/06 --> 302 lbs
8/14/06 --> 288.5 lbs (-13.5)
05/23/07 --> 274.2 lbs (-27.8)
On Weight Watchers:
09/28/08 --> 250.2 (-51.8)
On Raw: (coming soon!)
Goal Weight: 150lbs
How much underweight she is? Don't forget the charts were made from SAD kids weights and it is possible that neither of the kids might have been average weight-average is just mathematical figure and nothing else!
If child is very underweight, I am sure you can see it without scales or charts.
As for doctors - they are not gods, and they do not know that much more than you, in nutrition. Possibly even less. Doctors are useful in accidents and sudden ilness, but worthless in health and chronic diseases.
I do not know why american doctors think they can give parenting advice. They do not even spend that much time with their own kids.
I just hate the plain garbage that they reccomend to fatten kids up. CORN OIL? Yuck. I just don't get how they think that is a adequate reccomendation. You think they would at least reccomend olive oil. It cracks me up how so many people think coconut oil is BAD, but that Wesson is good. Where is the logic here?
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