Guest guest Posted January 14, 2007 Report Share Posted January 14, 2007 Oh, ! You are talking about things I have no clue, but better find out fast. went to endocrinology and the doctor was VERY DISAPPOINTED – she gained basically nothing in growth or weight in 6 months! Her last appointment had actually only been 4 months since the prior one and she’d grown 1 ½ inches and gained 7 pounds. Now NOTHING?!?!?! He asked Rick (I didn’t go) if was still getting her injections at school. assured him that she was. (I wonder if it is now being given correctly. I was told by one nurse that she had to go to the dorm and give a second injection because a substitute nurse had only given the diluant, not the hormone – she hadn’t mixed it and the only reason it was noted is because another nurse found the powder in the trash can!) In addition to that, is asking when she will get breasts. The doctor wanted to put it off as long as possible, to get the maximum growth we could from the GH therapy. But he also says if she is asking about this, it is now time to introduce HRT. I’m supposed to e-mail next week for results of bloodwork and discuss an Estrogen pill. I also need to get the results of her recent rheumatology appointment. And the appetite thing: is constantly asking for something to eat! I’d keep fresh fruits and veggies for her, but she doesn’t like them mushed up, and she can’t bite/chew them raw. Sigh :-/ Just when I’m starting to get some sort of handle on one thing – up jumps something else. Ain’t that the way it goes all the time?!?! Friends in CHARGE, Marilyn Ogan Mom of (14 yrs, CHARGE+ JRA) Mom of Ken (17 yrs, Asperger's) Wife of Rick oganm@... _____ From: CHARGE [mailto:CHARGE ] On Behalf Of mdlinda@... Sent: Sunday, January 14, 2007 11:36 AM To: charge Subject: Meg Hefner please Dear Meg, I was looking at the connections between leptin and HGH for a posible explanation for 's weight gain (consistant inordinate appetite which developed since introduction of HRT), I took a trip through endocrine cytokine receptors, made a left turn at " cytokines binding to antibodies paradoxically have a stronger immune effect than the cytokine alone. " drove through a " cytokine storm " and noticed RSV and JIA (juvenile idiopathic arthiritis) hanging out on the outskirts. > I wondered if there are any suspicions toward the behavior of cytokine proteins in Charge, and if our docs should be mindful of it as possibly manifesting as a complication? > Or did I take a traditional " Sunday drive " . You know-the one that goes nowhere. lol. Thanks Meg, in Ma. (, 21 yrs old) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2007 Report Share Posted January 15, 2007 marylin LOL yeah its good old chargeland as for em i loosing weight even witht her stuff was growing bit but loosing weight last check 39 ks interesting to c at post op on thurs how i am coz i went down from 47!!!!!!!!!!!!!111 > > Oh, ! You are talking about things I have no clue, but better find > out > fast. > > went to endocrinology and the doctor was VERY DISAPPOINTED – she > gained basically nothing in growth or weight in 6 months! Her last > appointment had actually only been 4 months since the prior one and she'd > grown 1 ½ inches and gained 7 pounds. Now NOTHING?!?!?! He asked Rick (I > didn't go) if was still getting her injections at school. > assured him that she was. (I wonder if it is now being given correctly. I > was told by one nurse that she had to go to the dorm and give a > second injection because a substitute nurse had only given the diluant, > not > the hormone – she hadn't mixed it and the only reason it was noted is > because another nurse found the powder in the trash can!) In addition to > that, is asking when she will get breasts. The doctor wanted to > put > it off as long as possible, to get the maximum growth we could from the GH > therapy. But he also says if she is asking about this, it is now time to > introduce HRT. I'm supposed to e-mail next week for results of bloodwork > and discuss an Estrogen pill. > > I also need to get the results of her recent rheumatology appointment. > > And the appetite thing: is constantly asking for something to eat! > I'd keep fresh fruits and veggies for her, but she doesn't like them > mushed > up, and she can't bite/chew them raw. > > Sigh :-/ Just when I'm starting to get some sort of handle on one thing – > up jumps something else. Ain't that the way it goes all the time?!?! > > Friends in CHARGE, > > Marilyn Ogan > > Mom of (14 yrs, CHARGE+ JRA) > > Mom of Ken (17 yrs, Asperger's) > > Wife of Rick > > oganm@... <oganm%40insightbb.com> > > _____ > > From: CHARGE <CHARGE%40yahoogroups.com> [mailto: > CHARGE <CHARGE%40yahoogroups.com>] On Behalf Of > mdlinda@... <mdlinda%40aol.com> > Sent: Sunday, January 14, 2007 11:36 AM > To: charge <charge%40yahoogroups.com> > Subject: Meg Hefner please > > Dear Meg, > I was looking at the connections between leptin and HGH for a posible > explanation for 's weight > gain (consistant inordinate appetite which developed since introduction of > > HRT), > I took a trip through endocrine cytokine receptors, > made a left turn at " cytokines binding to antibodies paradoxically have a > stronger immune > effect than the cytokine alone. " > drove through a " cytokine storm " and noticed RSV and JIA (juvenile > idiopathic arthiritis) hanging > out on the outskirts. > > > I wondered if there are any suspicions toward the behavior of cytokine > proteins in Charge, > and if our docs should be mindful of it as possibly manifesting as a > complication? > > > Or did I take a traditional " Sunday drive " . You know-the one that goes > nowhere. lol. > > Thanks Meg, > > in Ma. (, 21 yrs old) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2007 Report Share Posted January 15, 2007 , I'm afraid you have gone faaaar beyond my expertise. I've learned a lot of medical stuff about CHARGE, but endocrine stuff is still mostly a mystery to me. You could try sending an email to Dr. Kirk. He's in England, and sometimes takes a long time to get answers back, but he's an endocrinologist with expertise in CHARGE (has been to every conference). You can find his email on the endocrine section onf the Manual (it's on the website if you dont' have it handy)_ Meg > > Dear Meg, > I was looking at the connections between leptin and HGH for a posible > explanation for 's weight > gain (consistant inordinate appetite which developed since introduction of > HRT), > I took a trip through endocrine cytokine receptors, > made a left turn at " cytokines binding to antibodies paradoxically have a > stronger immune > effect than the cytokine alone. " > drove through a " cytokine storm " and noticed RSV and JIA (juvenile > idiopathic arthiritis) hanging > out on the outskirts. > > > I wondered if there are any suspicions toward the behavior of cytokine > proteins in Charge, > and if our docs should be mindful of it as possibly manifesting as a > complication? > > > Or did I take a traditional " Sunday drive " . You know-the one that goes > nowhere. lol. > > Thanks Meg, > > in Ma. (, 21 yrs old) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2007 Report Share Posted January 21, 2007 Marilyn, I am sorry I am so late on the uptake here.... I am sorry you were disappointed with 's results--it sounds llike she had specific expectations, as well! I would also be concerned if she was getting the injection properly, too. pam Meg Hefner please Dear Meg, I was looking at the connections between leptin and HGH for a posible explanation for 's weight gain (consistant inordinate appetite which developed since introduction of HRT), I took a trip through endocrine cytokine receptors, made a left turn at " cytokines binding to antibodies paradoxically have a stronger immune effect than the cytokine alone. " drove through a " cytokine storm " and noticed RSV and JIA (juvenile idiopathic arthiritis) hanging out on the outskirts. > I wondered if there are any suspicions toward the behavior of cytokine proteins in Charge, and if our docs should be mindful of it as possibly manifesting as a complication? > Or did I take a traditional " Sunday drive " . You know-the one that goes nowhere. lol. Thanks Meg, in Ma. (, 21 yrs old) Quote Link to comment Share on other sites More sharing options...
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