Prader-Willi Syndrome Support Group
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...
Hello,
I am new to the forum and and found you outy as I need some really sound advice.
Basically my two little cousins were taken into care a year ago they are 4 years old and 22 months old.
There is no one in the family to take them and we are the only ones who have come forward. However, in the last couple of weeks I have been told that the little one is undergoing tests for PWS.
Her symptoms so far include- Delayed developement of about 6-8 months. She can not walk yet. She has a lazy eye and one of her feet is turned in. She has the most lovely, amazing character. This is all I have been told (as you may guess we have not met her, my uncle moved away before they were born).
My husband and I have 4 children of our own they are 3 girls aged 8, 7 and 4 and a little boy aged 19 months. We are used to having extra children in the house as I often either have sleepovers for my girls or help look after other children. I had my niece stay recently for a couple pf nights. And next week I have 3 children staying with me for the week.
So we are used to looking after more than our own on a regular basis, but not children who may need extra care.
My husband and I want to do the best by these girls as we do our own children. If we say no, then there is no one else to take them and they will remain in care. If we say yes then are being fair on them, being able to give the little one what she needs. And are we being fair on our own children.
I should say that the girls social worker said it is possible that the syptoms the little one is displaying could be because of a lack of care and stimulation when she was living with her parents. But until the tests are back (which could take 12 months) they just dont know.
The social workers want to go to panel in the early part of 2011 and we are being fully assessed as soon as.
Am i asking to much of myself and my husband and my young family. Or could we realistically do this, Could the stimulation that our large family provide to the little one be a help in her devlopement. Or could she be fighting for attention the whole time?
Please help me decide what is the right thing to do.
thank you
I am new to the forum and and found you outy as I need some really sound advice.
Basically my two little cousins were taken into care a year ago they are 4 years old and 22 months old.
There is no one in the family to take them and we are the only ones who have come forward. However, in the last couple of weeks I have been told that the little one is undergoing tests for PWS.
Her symptoms so far include- Delayed developement of about 6-8 months. She can not walk yet. She has a lazy eye and one of her feet is turned in. She has the most lovely, amazing character. This is all I have been told (as you may guess we have not met her, my uncle moved away before they were born).
My husband and I have 4 children of our own they are 3 girls aged 8, 7 and 4 and a little boy aged 19 months. We are used to having extra children in the house as I often either have sleepovers for my girls or help look after other children. I had my niece stay recently for a couple pf nights. And next week I have 3 children staying with me for the week.
So we are used to looking after more than our own on a regular basis, but not children who may need extra care.
My husband and I want to do the best by these girls as we do our own children. If we say no, then there is no one else to take them and they will remain in care. If we say yes then are being fair on them, being able to give the little one what she needs. And are we being fair on our own children.
I should say that the girls social worker said it is possible that the syptoms the little one is displaying could be because of a lack of care and stimulation when she was living with her parents. But until the tests are back (which could take 12 months) they just dont know.
The social workers want to go to panel in the early part of 2011 and we are being fully assessed as soon as.
Am i asking to much of myself and my husband and my young family. Or could we realistically do this, Could the stimulation that our large family provide to the little one be a help in her devlopement. Or could she be fighting for attention the whole time?
Please help me decide what is the right thing to do.
thank you
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
I have been looking after a four year old wiht Prader willi in a house with two other children with servere disabilities for about 4 months and two weeks ago we moved into a little house of our own. Obviously every child and situation is different but I have found that although the group home was not appropriate for my wee one the challenges were not excessivly onerous. The biggest challange for me was the food seeking behaviour but that is just a case of good supervision. Other problems which coexist of course complicate things as they would with any child.
I do feel that a large family could be quite benificial to a child with PWS and if you could give a typical child enough attention you should be able to give this little one enough too. One of the best things about large familys is that there is a lot of people around to give attention as well as get it.
If you have any questions or want more info please just give me a yell.
Monica
I hope this kinda help...???