Re: Latest on Isaac..Mimi

[Guest guest]

Hi Mimi,

Our first Endo said many of the same things about GH and RSS. She has

several RSS patients. She wanted to start on GHT at the age of 15

months, for a 6-8 month trial run, BUT informed us that if we didn't see

dramatic results in that amount of time, she would stop GH, and would not be

willing to use it again.

Shouldn't a Ped. Endo know that growth, in a 15 month old child, IS NOT

ruled by GH??? That caloric intake = growth for a child that age?? If we had

followed her advice, then would have been under the age of 2 when

she stopped GH permanently!!!

She, also, told us that " caloric catch up " was a myth. That would

never be able to complete any " caloric catch up " , AND, that if we were going

to wait for this imaginary " caloric catch up " we would never be ready to

start GHT. Fast forward 9 months, and what she told us was impossible,

HAPPENED!!! completed his caloric catch up at approximately 2 years

of age!!

This same Endo was also no help when it came to and Hypo-g. She

wasn't worried about it, even when we told her that 's BS dropped

30-40 points when he was off continual feeds for 30 minutes. According to

this Endo, that is just B's body adjusting to not being fed continuously,

and that his BS would even off as his body's systems compensated for the

loss of continual feeds. For , that just doesn't happen, and that is

why his BS has reached lows in the 20s several times! When we tried to get

more information from her about Hypo-g, and how it works, and about Insulin

Resistance, she was very vague and unhelpful. I've learned more from this

list serve and my research than I ever have from an Endo here in Cleveland!

Needless to say, doesn't see this Endo any longer, but the one we

have now is really no better. I don't know if the problem is that they

belong to the " world renown " Cleveland Clinic, and that makes them think

that they know everything, That they have nothing left to learn? Or that

they just have big egos?? But none of the Endos we've tried here are not

open to ANY type of new information! We no longer deal with the Endo

directly. We work with his Nurse-Practitioner as a " go-between " . At least

she is willing to listen, contact Dr H, and learn!

Hope this helps!! Glad to hear the good news about Isaac!!

Pat (g-ma to , RSS, 33 months, 22.5#, 31.8 " , G-Tube)