Guest guest Posted February 1, 2006 Report Share Posted February 1, 2006 Hi Deb, Yep, Dr.D e-mailed me the moment he was back from holidays but it's a whole other issue here. After several e-mails and phone calls I've gotten NO response from the endo here. And the secretary said her wait list is over 6 months. I've tried calling other endos to " interview " them on the phone so I don't have to waste my time waiting for an unproductive appt., also to no avail. You know, not only do I feel Olivia's being left behind, I feel she's being swept under the rug. I get so very frustrated in going to the convention to see everything there is to be done and see how wonderful the kids are doing there just to have it all dangled in my face. Don't get me wrong (especially for you new parents who've never been!!!!) We would do ANYTHING to go to the convention EVERY year even if it means getting a loan or remortgaging the house (which we won't have to do). We love it there and CHERISH our only weekend of " normal " every year. However it feels like a big tease once we get back to Canada and the Dr's are so ignorant. I'm saddened when there are kids here bigger than Olivia that get g-tubes and GHT, not that I want her to have a g-tube but how else will we get her to grow? I do understand that every child is different and treatment is therefore different but why do I have to wait until she is is emaciated to get care or concern. Sorry this is turning into a vent but I'm so very frustrated and it's not in our budget to go to both the convention and TO in the same year. We don't want to miss the convention for anything. We would also have to contact our insurance and see if they will cover GHT script from out of province before we went. I've thought of e-mailing Dr. H and seeing if she has any insight for me but I don't think there's anything she could do considering the logistics... Chat more soon, Leah > > > > Oh, how I wish I had known to tape this!!! > > Discovery Health and The Learning Channel showed an amazing > program > > following a family of 5, with both parents being achondroplasic > > dwarfs. > > > > Here's a link from the production company: > > http://www.advancedmedical.tv/shows/mtf.htm#synapsis > > > > The program was absolutely, postively inspiring, funny, and > practical > > too! Here's a quote from the promo: > > " It will introduce viewers to a family that faces challenges head- > on, > > challenges that any average-sized family would find difficult to > > manage. We'll witness their daily struggle to fit into a world > that > > isn't built to fit them, and their amazing resolve to make their > > lives as normal as possible. Whatever preconceived notions that > exist > > about dwarfs will be quickly forgotten upon meeting the Foos. > Because > > in the case of the Foos, it's not their first impression they're > > concerned with, it's their lasting impression. " > > > > IT also included a nice little segment about how meaningful the > > annual LPA Convention (Little People of America) is to the > family. > > Reminded me a lot of what the MAGIC Convention means to our > RSS/SGA > > families. > > > > I have NO idea when or if it will air again, but perhaps you > Googlers > > out there can find more info. > > > > Enjoy! > > kATY > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2006 Report Share Posted February 2, 2006 Hey there Deb, I copied and pasted Dr. D's e-mail and it's not very exciting, lol! I was hoping since both of their names are french that she'd be more open to treatment so I guess I'll just have to keep e-mailing and play the waiting game. I don't see Olivia reaching 4' on her own without GHT, especially since her TARGET height is only 4'10 " . For some reason the endo's here think that will still be her final height because it's her target, ugh! They just don't want to learn about RSS. I even brought in both mine and my older daughters weight and growth charts from birth and it made no difference. Very frustrating again but as I've said before, we'll just keep plodding along! As for contacting Dr.H, it wouldn't be for a script or an appt, just for help in how to talk to the Dr's here. I suppose it couldn't hurt. We so appreciate all of your help and the offer of your home as well, we will definatly take you up on it if this journey takes us to T.O.! Leah, mom to almost 11 and Olivia 6yrs, 23lbs, 36 " , RSS, OI Here's the letter.... Dr. e Pacaud is Head of the Division of Endocrinology at Alberta Children's Hospital. Below is her contact information. You may wish to contact her first before considering a trip to Toronto. Please also be aware that Silver Syndrome is not an approved indication for GH nor is there government coverage for tis medication in this situation. This will pose significant potential barriers to obtaining GH in Ontario unless your insurance company is willing to cover it. I will wait to hear further from you. Best wishes; > > > > > > Oh, how I wish I had known to tape this!!! > > > Discovery Health and The Learning Channel showed an amazing > > program > > > following a family of 5, with both parents being > achondroplasic > > > dwarfs. > > > > > > Here's a link from the production company: > > > http://www.advancedmedical.tv/shows/mtf.htm#synapsis > > > > > > The program was absolutely, postively inspiring, funny, and > > practical > > > too! Here's a quote from the promo: > > > " It will introduce viewers to a family that faces challenges > head- > > on, > > > challenges that any average-sized family would find difficult > to > > > manage. We'll witness their daily struggle to fit into a world > > that > > > isn't built to fit them, and their amazing resolve to make > their > > > lives as normal as possible. Whatever preconceived notions > that > > exist > > > about dwarfs will be quickly forgotten upon meeting the Foos. > > Because > > > in the case of the Foos, it's not their first impression > they're > > > concerned with, it's their lasting impression. " > > > > > > IT also included a nice little segment about how meaningful > the > > > annual LPA Convention (Little People of America) is to the > > family. > > > Reminded me a lot of what the MAGIC Convention means to our > > RSS/SGA > > > families. > > > > > > I have NO idea when or if it will air again, but perhaps you > > Googlers > > > out there can find more info. > > > > > > Enjoy! > > > kATY > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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