Guest guest Posted January 5, 2006 Report Share Posted January 5, 2006 Anita, I'm sorry it's taking so long to get a diagnosis. I really wish i had something to say that would help you, What signs and symptoms does your son have? What are his characteristics? Chrissy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 he may be unsure and not know enough about rss. he might want to see if he is gh deficinet. if you arent comfortable with the dr maybe you should look into a second opionon. does he have an endo? you should get one if you dont already. i dont remember where you live but maybe if you could get to chicago for the convention or to nyc you could take him to the US expert for rss dr harbison. good luck!! jodie c Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 Anita, Please don't think that you are complaining ... we have all been there and need to vent or let it out here! We all care and want to listen so let it go anytime! The waiting game is never easy. Dawna Matt 13, 11, 8 and Noah 3 RSS > > iel had his appointment with the geneticist today. Not much was > said on his part. He once again explained to us what we already know... > iel is short statured and below the third percentile for both > height an weight. I asked him whether he felt appeared to have > RSS or not. He did not rule it in or out. He instead said " Let's see > what happens with his growth hormone stimulation test on the > ninth. " " Then let me know and I will have you come back in. " It is hard > to be patient in this waiting game. It is just hard not having an > explaination for your child's condition. I love and want the > best for him. Anyone have a guess as to why he wants to await these > results to say anything? He's a very smart man it seems.I just hope he > knows what he's looking for because 's physical examination was > not very thorough in my oppinion. Sorry to complain I just needed to > express my thoughts and feelings to someone who understands. Thank you > all for lending an ear. I am wishing nothing but the best of health and > happiness to all you and your little ones the are all so precious and > deserve it!! Anita( mom to iel 7 years old 34lbs Undiagnosed) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 Anita - I can not imagine the frustration you must feel not having a diagnosis for iel. I'm sure it makes things difficult when trying to maintain his health with physicians and insurance. You are doing a fabulous job pursuing a diagnosis though and iel is so fortunate to have you. You know, I'm not going to question the geneticist - but, I do have a suggestion for you. I'm wondering if you have the option to get a second opinion (I apologize if you have already discussed this - bear with me <grin>). If not, another consideration for you would be to stand firm with this physician and tell him that it would be beneficial and prudent of him to assist you in finding out the details of his condition so that you can movce forward with the appropriate individuals to ensure quality of care for your son. Have you an Endocrinologist yet? I know that the several that I have met with did their " own " assessments to " confirm " Ian's diagnosis - which in turn helps them to manage the particulars of his healthcare on an ongoing basis. Because, even if you do not get a " spcific " diagnosis for iel, you would at least get another " point-of-view " from an Endo that would be helpful with iels healthcare anyway. Does that make any sense? As far as the stim test - I can't answer that question for you - I have my own opinions - but, nothing worth mentioning. I'm sure someone else here will be able to offer some helpful advice to you in that regard. Keep us posted though. And, please do not hesitate to ever discuss your feelings, concerns and/or questions here. That's what we are here for - and I'm so glad you felt comfortable enough this time around to chat. Again, please keep us posted. We care. - H -- In RSS-Support , " atwine22 " <atwine22@y...> wrote: > > iel had his appointment with the geneticist today. Not much was > said on his part. He once again explained to us what we already know... > iel is short statured and below the third percentile for both > height an weight. I asked him whether he felt appeared to have > RSS or not. He did not rule it in or out. He instead said " Let's see > what happens with his growth hormone stimulation test on the > ninth. " " Then let me know and I will have you come back in. " It is hard > to be patient in this waiting game. It is just hard not having an > explaination for your child's condition. I love and want the > best for him. Anyone have a guess as to why he wants to await these > results to say anything? He's a very smart man it seems.I just hope he > knows what he's looking for because 's physical examination was > not very thorough in my oppinion. Sorry to complain I just needed to > express my thoughts and feelings to someone who understands. Thank you > all for lending an ear. I am wishing nothing but the best of health and > happiness to all you and your little ones the are all so precious and > deserve it!! Anita( mom to iel 7 years old 34lbs Undiagnosed) > Quote Link to comment Share on other sites More sharing options...
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