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LARIE,
HE HASN'T SAID ANYTHING TO ME. HE SEEMS FINE, HE (UNLIKE MY DAUGHTER) IS NOT A COMPLAINER. HE'S ONE THAT IF HE SAYS SOMETHING HURTS OR HE DOESN'T FEEL GOOD, IT'S TIME TO GET TO DR OR HOSPITAL ASAP. DOCTORS LOOK AT ME FUNNY SOMETIMES WHEN THEY ASK ME THINGS AND I TELL THEM TO ASK HIM. LIKE I SAID, HE HASN'T SAID ANYTHING TO ME. HE DOES HAVE SOME PAIN SOMETIMES, BUT IT'S TO THE POINT THAT YOU DON'T KNOW IF IT'S NORMAL GROWING PAINS OR IF IT HAS TO DO WITH HIS PROTRUGIO (HIP SOCKETS PARTIALLY INSIDE OF PELVIS). SORRY I COULDN'T HELP MORE.
VICKIE
larie beck <ty_ree_b@...> wrote:
larie beck <ty_ree_b@...> wrote:
Vickie,Did you'r son have any side affects after starting the losartin? Such as the weak legs?Just curious if that is common?Larie
Vickie Joyner <phat_emt@yahoo.com> wrote:HI LARIE,THIS IS VICKIE. DR DIETZ PUT MY SON ON BOTH. HE WAS ON ATENOLOL 25MG AM AND PM, BUT NOW HE IS ON LOSARTIN 25 AND ATENOLOL 25 IN THE AM AND LOSARTIN 25MG AT NIGHT. DUE TO LOEYS-DIETZ SYMPTOMS THEY SAID HE COULDN'T BE IN STUDY BUT NOW THAT DNA HAS CONFIRMED MARFAN, THEY SAY HE CAN. I HOWEVER HAVE MADE THE PERSONAL DECISION THAT WITH ALL THE POSITIVE TALK ON LOSARTIN, I WOULD RATHER HIM NOT BE IN STUDY DUE TO NOT KNOWING IF HE WOULD STAY ON THE LOSARTIN. AND HE WOULD HAVE TO COME OFF OF ONE OF THE MEDS. DR DIETZ IS VERY PRO ACTIVE AND I COULDN'T PRAISE HIM ENOUGH. I HAVE HOWEVER TOLD THE COORDINATOR THAT SHE IS WELCOME TO ANY AND ALL OF HIS RECORDS, (SHE'S IN HIS LOCAL CARDIOLOGISTS OFFICE) TO USE FOR THE STUDY BUT LIKE I SAID, THAT'S A PERSONAL CHOICE. MY SON IS 5'1" AND 66LBS. BTW.GREAT CHATTING WITH YOU!VICKIE
larie beck <ty_ree_b@yahoo.com> wrote:Hi Everyone,I am still without a computer, and missing everyone.For those of you that have known me for a while, just a little update on my son.He just got his new prescription glasses and contact lens. He is know seeing 20/25.Amazing!Also we started him on the Losarton because he is not eligable for the clinical trial. It seems to make his legs feel tired a week. So we started giving it to him at night before bed instead of in the morning and it is not an issue anymore.Some one asked about dosage of Losarton, my son who is 7, and 4ft9in, weighs about 80lbs is taking 25mlg once a day, and is no longer taking the atenolol.Ya know what, I think that was a different site where someone asked about dosages, oh well.Blessings!Larie
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