tag:blogger.com,1999:blog-3404277591574060620.post5442980416530995352..comments2023-03-30T20:49:07.021-07:00Comments on Isaac's Big Adventure: Aggravated . . . Stressed, DiscouragedIsaac's Momhttp://www.blogger.com/profile/14364104252643983830noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-3404277591574060620.post-23082725948918142932011-02-07T04:01:01.844-08:002011-02-07T04:01:01.844-08:00So sorry to hear you are having a hard time right ...So sorry to hear you are having a hard time right now<br />I know just how you feel,here in the UK there is no great specialist that I can call to get guidance about Lucy and I really have to use my instinct about suppliments ect and information from other pws mums although I currently have Lucy on nothing more than multi vits and ormega 3 and she is doing well so Im guessing for now that enough for her needs<br />It sounds as though Dr Miller is a great pws dr and if I lived close enough I think I would have Lucy on her patient list and maybe I may even call her from the UK if I need help any time<br />I was very lucky to find an endo in UK who put Lucy on GH at 4 months old and is very open to my ideas but to be honest I want him to tell me stuff not the other way round<br />I guess what I am trying to say is you are not alone in feeling like this and with this condition it is so hard to know what to do fro the best as everyone seems to have different advice<br />I say go with you gut feeling and push for what you know will give you peace of mind and push and push and push till you get itAndrew,Sally,Megan,Daniel and Lucyhttps://www.blogger.com/profile/01376454810331205416noreply@blogger.comtag:blogger.com,1999:blog-3404277591574060620.post-79226435158542623262011-02-03T04:11:26.900-08:002011-02-03T04:11:26.900-08:00Go for it!
My wife contacted Dr. Miller and she wa...Go for it!<br />My wife contacted Dr. Miller and she was really helpful. You have to get to where the serious research is being done, and those places are few and far between.<br />What we've found in London is that the top children's hospital is way behind the times on the research, but an endocrinologist has started a multi-disciplinary PWS clinic with nutritionists and other researchers, and that we get much better care there.<br />Elliot started on growth hormone at 9 months largely because of Dr. Miller's research. He's taking a standard vitamin supplement (Dalivit) and is also taking CQ10, although that's been shown to have only minimal benefit in comparison to human growth hormone.<br />My experience of medical staff generally is that you need to be interesting. If they can treat you as another statistic they will. If they're really interested in your condition, they'll pay you special attention. So find someone who's really interested in PWS and I'm sure Isaac will benefit.Proopshttps://www.blogger.com/profile/03636112636104251765noreply@blogger.comtag:blogger.com,1999:blog-3404277591574060620.post-77766361102820472712011-02-02T15:12:02.900-08:002011-02-02T15:12:02.900-08:00Dr. Miller is amazing to talk to. She might be wi...Dr. Miller is amazing to talk to. She might be willing to contact your local doctor and suggest the new dose for you. She was willing to do that for us, but then our local doctor was a dick, so we dropped him altogether. <br /><br />The squeeky wheel gets the oil! Bug them til they cooperate or you find an alternative. <br /><br />Some doctors just expect kids with PWS to gain weight (aka be overweight), but it's not necessary and certainly avoidable.Sarahhttps://www.blogger.com/profile/14109435826887215070noreply@blogger.comtag:blogger.com,1999:blog-3404277591574060620.post-80974223904604529402011-02-02T09:32:33.511-08:002011-02-02T09:32:33.511-08:00Hang in there and, yea, contact Dr. Miller or Pitt...Hang in there and, yea, contact Dr. Miller or Pittsburg now, even just for a back up appointment. If you wait til march, are not satisfied, then you will have to wait to get in elsewhere. You can always cancel.Janet Gulleyhttps://www.blogger.com/profile/06162344678840835262noreply@blogger.com