Conny

[Guest guest]

Hi Conny,

I can hear the frustration in your post. I feel so bad for you. It

sounds like you aren't getting any help or support whatsoever. Did

you say that you had an endo. appt.? Maybe they will be able to help

you, since after all they do focus on the growth disorders. Maybe

the endo will have heard of RSS. The one that 's ped. has

referred us to claims he has dealt with RSS before, but I don't know

how accurate that is. I am alwys leary of people saying that, and

then not really knowing what they are dealing with. Anyway, I sure

hope you can get to Dr. H one way or another. Honestly, I think she

is your best bet at this point. If you can see her at the

convention, and she says that is indeed RSS, then you have

your diagnosis and the doctors can't ignore that or you anymore! I

think it is so important for you to see her. I know how frustrating

it is to not really know what is going on with your child and trying

your hardest to take care of him despite not getting the help and

support that you really need from the ones who claim they are

knowledgable, and there to help (doctors). Luckily, I do have a

great pediatrician for my boys, and he was so willing to jump in with

both feet and help me find the correct diagnosis for . But, it

was so frustrating in the beginning months (17) not knowing waht was

plaguing and hindering his growth. I remember posting on here how

scared I was because was only gaining one ounce a week, and

how I couldn't see how he was surviving. The best thing I did was

make the effort and email Dr. H and tell her my story. I sent her

pictres of and she responded saying that he apparently looks

like an RSS child and that I needed to see her ASAP, due to his poor

growth and weight gain. So, all in all, he has done so much better

since we made the long, hard, emotionally draining trip, and it was

well worth it. Did you email Salem about the scholarships?

If it is that you can't get there due to financial reasons, that may

help you once you apply for the scholarship. Okay, this has become

very long (like I am famous for), but I wanted to let you know that I

totally understand where you are coming from. You deserve to know

whether has RSS or SGA.

Hugs to you,

Jodi R.