the endo called...and I wished he didnt...

[Guest guest]

uggh! I don't know what to do...

I am so upset. After waiting two weeks for a return phone call...

The doctor told me he was small because he was not getting enough

nourishment. I told him that we had been over the calories with dieticians and

they

said it was adequate. He had not had problems with vomitting since he had been

on Neocate, and he has been on it almost ten months. He didn't seem to

understand. He said " I just keep repeating myself with you and I don't know

why

you don't realize this needs to be dealt with first " . He said there was no

evidence that he had a GH problem, even though he admitted they had not done

the full studies.

Then He said I needed to work with our GI at Vanderbilt on the nourishment

and I told him that they wanted the hypoglycemia figured out before they

continued with their protocol. He said " My partners were on the money of

dealing

with the low glucose...frequent feedings and no fasting " . I said well

obviously that was a good way to prevent the HG but didn't explain WHY he had

it.

He said over and over if he had enough nourishment that this might go away.

I reminded him that he was the one who said in the hospital that there had to

be a pathological explanation as to why he was having HG. He said well, we

don't have evidence of that either. WHAT? They monitoried his blood sugars

every two hours while we were in and he was frequently in the 60s when he

went over a couple hours without eating. The ambulance got a 31...and

Vanderbilt has a 24 caught (without us ever knowing its a problem) via CBC

panel.

So he doesn't wnat to see him until May. I have no idea what to do! There

is another endo group in town I posed about earlier in the week (only got one

response) but they want $600 for an initial consultation and wouldn't be

covered by our insurance. One of my friends advised me against doctor hopping,

which I would like to be careful of, but we only saw them inpatient so

technically, we aren't official patients yet right?

Any advice welcomed! uggh! I am so upset! I can't believe he was so rude

to me and kept acting like I was an idiot because I was questioning how he

could be under-nourished when he had adequate calories and no vomitting...

deb...mom to four fab adopted kiddos... (07.04.96-05.26.03) with

Mitochondrial Myopathy...G, 6, with High Functioning Autism, Hypoglycemia and

Precocious Puberty...B, 4, with VERY mild Cerebral Palsy...and True 1yo, with

Neuromotor Disorder, Hypoglycemia, Myoclonus, ulcers, undiagnosed GI problems

plus severe food allergies (Eggs, Peanut, Milk, Soy, Corn, Rice, Oats and

Crab/Neocate-only), Plagiocephaly and Dysphagia....Married for 12 years to

F--one

swell guy!_ www.caringbridge.org/tn/wells/_

(http://www.caringbridge.org/tn/wells/) (http://www.lifeofloveproject.org/)