Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi people This may be a good time to mention a few things: 1. Young people read this message board. Please take this into consideration when you compose messages. 2. Please put your full name and where you are from at the bottom of the email. 3. Remember that there is no substitute for professional advice. If you seek an alternative, then it is best to look for another professional. 4. There are some terms that when used in a medical context have specific medical meaning. Please don't be offended when you read these terms within the context of a support group for a syndrome. For example, it is acceptable and normal to use the phrase " retarded " to describe a medical condition. However, it would be unacceptable to hear children or adults jokingly refer to somebody in that manner. (I know we all know that, but I thought it would be helpful to state it to make the example more clear). 5. Remember that many parents of little ones join this support group early in their quest for information. So we should make sure that they feel that they don't get swamped. Don't get me wrong, healthy exchanges in opinions are good. And I would never want to suggest that people should hold back from posting a message. But what I am saying is this: ask yourself " am I adding anything to the debate? or am I just repeating myself? " . Take care Shireen Mohandes London, England Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 > > Hi people > This may be a good time to mention a few things: > > 1. Young people read this message board. Please take this into > consideration when you compose messages. > > 2. Please put your full name and where you are from at the bottom of > the email. > > 3. Remember that there is no substitute for professional advice. If > you seek an alternative, then it is best to look for another professional. > > 4. There are some terms that when used in a medical context have > specific medical meaning. Please don't be offended when you read these > terms within the context of a support group for a syndrome. For > example, it is acceptable and normal to use the phrase " retarded " to > describe a medical condition. However, it would be unacceptable to > hear children or adults jokingly refer to somebody in that manner. (I > know we all know that, but I thought it would be helpful to state it > to make the example more clear). > > 5. Remember that many parents of little ones join this support group > early in their quest for information. So we should make sure that they > feel that they don't get swamped. Don't get me wrong, healthy > exchanges in opinions are good. And I would never want to suggest that > people should hold back from posting a message. But what I am saying > is this: ask yourself " am I adding anything to the debate? or am I > just repeating myself? " . > > Take care > Shireen Mohandes > London, England > Dear Shireen Re; point number 5. Oh boy, have I been feeling swamped. I have an appt. to see the opthamologic cosmetic surgeon on the 5th Dec, for my 15 month old son with BPES. So all these current posts for and against surgery have made very topical reading. I am still none the wiser on where I stand on this issue; but from what I have learned, there is a BIG chance of people with BPES ending up with eye problems such as Amblyopia? As it is, my son has just been given a prescription for full time glasses; I pick them up on Thursday ; won't that be fun, trying to keep them on his face?! So I guess surgery would not be for purely cosmetic reasons. Anyway, just to say thanks for all your advice etc. Take care. Cretemum. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 Hi there I cannot help you with your question on Amblyopia as I am not in the medical profession. I really think this is a question for your doctor (unless one of the many doctors who are members of this group want to answer this question ... ). I hope that nobody in the group is confused any more. Please take a look at the other post I just made, with the link to the info on surgery. Take care Shireen Mohandes London, England (but was in Yosemite yesterday and saw a bear, it was both exciting and scary). > Dear Shireen > > Re; point number 5. > > Oh boy, have I been feeling swamped. I have an appt. to see the > opthamologic cosmetic surgeon on the 5th Dec, for my 15 month old son > with BPES. > So all these current posts for and against surgery have made very > topical reading. > > I am still none the wiser on where I stand on this issue; but from > what I have learned, there is a BIG chance of people with BPES ending > up with eye problems such as Amblyopia? > As it is, my son has just been given a prescription for full time > glasses; I pick them up on Thursday ; won't that be fun, trying to > keep them on his face?! > > So I guess surgery would not be for purely cosmetic reasons. > > Anyway, just to say thanks for all your advice etc. Take care. > Cretemum. > Quote Link to comment Share on other sites More sharing options...
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