Josh's doctors appt.......

[Guest guest]

I must have the worst luck in finding doctors.... yesterday was Josh's appt.

- the one I was looking forward to finally getting some answers or at LEAST

a plan of action.

Josh weighed in at 12-lbs 14oz yesterday, up from 12-lbs 1oz two weeks

earlier (he was 8.14 at birth). Anyway... his *new* doctor said he didn't

see anything to be concerned about. He didn't know why the fat is in his

stool (or why he is malabsopbant) he doesn't know what the Alpha One

Anti-Trypsin test is and what the elevated levels mean and he thinks as long

as Josh continues to gain weight that he isn't worried.......He thinks he

*just* had a rough start...

I left that office yesterday just wanting to cry. WHY cant any of these

doctors take the time to put my mind at ease - even if it is nothing????

WHAT is so hard about ordering the right tests - or learning what the heck

this Alpha typsin thing is? This is the SECOND doctor to tell me he didn't

know what the test was, what it meant, or why it was ordered in the first

place. What the heck are these doctor's earning all this money for? Sorry

for the rant - I am just going over my limit. These doctors are making me to

feel like I am over-reacting. When in fact it was THEM to come to me with

this initial " problem " - I thought he was allergic to milk for PETE's sake!

Why are they making it seem like such an insignificant problem now???? Did

he spend 10 days in the hospital just for a *rough* start???

I'm glad you guys are here to listen.... I don't know what to do from

here.... am I supposed to just sit back and wait for this doctor to order

the sweat test whenever he feels like it. He mentioned waiting until Feb

when we have to go back down to Pittsburgh to see Josh's GI doctor. Here is

another doctor who told me to call Pittsburgh myself to schedule it... HELLO

- I thought he was a PCP... doesn't this mean HE should be coordinating

Josh's care??? He said I'll see you in 2 months..............

<<<<<<< >>>>>>>>>>

n

> Re: n

>

> well he is just gettin beast milk and thats it!! he is also on enzymes

> with every feed, which I give through a sirange with breast milk into his

> mouth. I take many supplmenmts my self so he gets it in the milk. Liam

> is 13pd 13 oz last week thursday, he was born at 7 pd 15 oz. He is now

> taking a herb which is talked about on another message bored to increase

> absorbtion. Soon I will start him on juiced organic carrort juice to get

> more beta carotene so that he can convert it to vitamin A in his liver.

> Will do this through the medicine dispenser. He had vitamin levels

> checked and he was down on vitamin E and D so we are going to start

> micelle Vitamin E and I am buying a water soluble A from the health shop.

> I havent had to give him any extra fomulas or calories, and I figure that

> breast milk is the best sort of fat for baby and whole food. Cows milk

> products have large protiens that are hard for humans to digest and break

> down that is probably why there are so many allergies for milk becasue we

> are not cows!! although sometimes when breastfeeding a baby you feel like

> a cow! RIGHT?? LOL .

> Anyway we should keep in touch maybe send some photos

> My private e mail is

> smoneill@...

> mum to baby Liam and to Angel Lily who died of CF at 8 days old,

> and wife to wonderful friend

>