Re: the endo called...and I wished he didnt... - Deb

[Guest guest]

In a message dated 2/10/2006 6:13:46 PM Central Standard Time,

pcpets@... writes:

Another thing, RSS kids need more calories than " normal " kids. The basic

rule is something like, if the child is not growing and gaining, then it's

not " enough " calories

remember, RSS is only a guess of MINE at this point, so i can't really

approach them this way.

He is growing and gaining and around the 20th percentile for both...he has

continued to stay there and hovers around it. However, he has stayed fairly

consistently on the same curve and every doc from the GI to the pedi has said

this is fine.

We saw the endo floor nutritionist when we were inpatient and they said he

was getting adequate calories. He is getting 860 a day...he wieghs about 20

pounds. When the endo told us to start feeding every three hours I asked her

(a partner of the one who called today) if I should add calories and she said

absolutely not...and just made me adjust the amount of volume he is getting

at each feeding and keep the same amount per day.

I honestly think he saw the GI issues and assumed that he is vomitting all

the time, even though I kept telling him this was not the case and the calories

had been checked and he was growing. This is why I kept questioning him

and he couldn't u nderstand why I found this confusing.

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/)

[Guest guest]

Hi Deb,

Personally, I would try another Dr. Not necessarily another group of Endos,

but a different Dr. I would ask to see a different Endo in the group that

your insurance covers, and tell them that you feel that you need a second

opinion.

In any medical situation, the Dr and the parents have to see eye-to-eye, and

you obviously can't do that with a Dr that is rude with you because you're

trying to understand his opinion of your child's situation. I would never

stay with a Dr that didn't respect my opinion, or wasn't willing to explain

things to my satisfaction. If that's Dr hopping, then so be it!

I can't remember.... does True have a g-tube??? If not, have you considered

one? Bran is on continuous g-tube feeds because of severe hypo-g, and a

severe oral aversion, and it really helps.

Another thing, RSS kids need more calories than " normal " kids. The basic

rule is something like, if the child is not growing and gaining, then it's

not " enough " calories. When Bran was first on his g-tube he was receiving a

whopping 160ckal/kg/day!!! Once he attained caloric repletion, he started

gaining weight too fast, and was put on a much lower calories diet. So maybe

what the dietician " thinks " is adequate calories, just isn't???

This is all just my opinion, but I certainly wouldn't stay with a Dr that

cannot communicate his opinions concisely. Oh and by the way, I LOVE the

name True!! LOL

Pat (g-ma to , RSS, 4yrs 1m old, 28# 10oz, 35 " , G-tube, GHT)